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NeurodigestCapturing News & Views from the

Neurology Community

ADVANCES IN CLINICAL NEUROSCIENCE & REHABILITATION

Reviews

Personal Perspectives

Case Studies

ISSUE 5: SPRING 2020

Produced in conjunction with the Primary Care and Community Neurology Society

Neuroncology

www.neurodigest.co.uk

see the right person at the right place, at the right time, fi rst time, would go a long way to improving patients’ experience. Linda shares with us some of the successes of the 100-day neurology challenge. Neurodigest challenges you “Dear reader” to join the Community of Practice (email [email protected]) and make a change!

Please read Jason Price’s review of hypnosis and functional neurological symptom disorder (FND) carefully. Patients with FND are, in the most part poorly served by the traditional subspecialty outpatient model. Telling a patient they have nothing “seriously wrong”, reassuring and then discharging, often does little for

the FND patient. They are left with no understanding and no support. Jason explains the application of the Bayesian model as a way of explaining a patient’s symptoms and that understanding the patient’s symptoms within this model opens up a new direction for neuropsychological

therapies. We should all be confi dent in making a positive diagnosis of FND and

to be able to explain the current thinking of mechanism of their symptoms and be able to offer them effective therapies.

On a fi nal note, in my view there is little that can’t be improved with exercise. We need to spend more time encouraging activity and less prescribing of pills. Andrea Stennett gets under the skin of the physiotherapist to explore their views of exercise and physical activity in patients with MS. More understanding of what patients with MS do and why they do it can better help us support them. Keep dancing!

Alistair ChurchNeurodigest Editor

2 • NEURODIGEST • ISSUE 5 • SPRING 2020

it can better help us support them. Keep dancing!

Alistair ChurchNeurodigest Editor

FRoM THE EDIToR

Hello and a big welcome to the 2020 edition of Neurodigest. Once again, we have made it our mission to trawl the UK for exciting ideas, innovation and best practice in the world of community-based neurology. We aim to showcase the people and ideas that are shaping this world for now and the future. If we were all as good as the best of us just think how good that would be!

Our news section will bring you up to date and signpost you to all that is new in the world of research. We have brought together a brief synopsis of all that is going on. If it tickles your fancy then the full articles can be accessed online at www.neurodigest.co.uk.

If we have a theme in this edition it is ‘the gut’. We are indebted to Valentina Leta and Ray Chaudhuri for bringing us up to date with the latest views on the role the gut might be playing in the pathophysiology of Parkinson’s disease. If we are looking for the “smoking gun” then the gut might be a target rich environment. Could altering the gut microbiota infl uence the disease process? SymPD might go some way to answering these questions.

Continuing on the theme of “we are what we eat” Susan Wood and Catherine Zabilowicz inform us of the experiences of patients with brain tumours who have followed a ketogenic diet.

A qualitative survey into the experiences of 25 patients who followed this diet is reported. This is an important insight into the views and experiences of patients who choose this diet.

Neurodigest is thankful to Louise Henry and Clare Shaw for providing a current perspective on the role of the ketogenic diet in the management of cancer. They highlight some of the ethical issues surrounding the promotion of a treatment which has limited clinical evidence and remind us that following a ketogenic diet may not be without risks. Food for thought indeed!

Service development is key to “getting it right”, and Helen Spear writes eloquently on the subject. Allowing us to get into the head of the patient helps us understand how the life changing diagnosis of a brain tumour can affect all aspects of life and how important the network of allied health care professionals can be in supporting the patient on their journey.

There is nothing like reading about a patient’s experiences to add clarity to what works and what needs improvement. Neurodigest is very grateful to Tracy Posner and Neil Bindemann for sharing their experiences with us. Such accounts should always make us stop and refl ect on our own practice, and think how we can improve our patient’s journeys.

Our reason for existence is unearthing and disseminating innovation. Neurodigest is thankful to Linda Charles-Ozuzu for showing us all how to make a difference. The Animal Farm model of “just work harder” is of course doomed to failure. We all need to have time to refl ect on our service and see how we can do thinks in a smarter way. The National Elective Care Transformation Programme is tasked with doing just that. To ensure the patients

Welcome

CoNTENTS

NEURODIGEST • ISSUE 5 • SPRING 2020 • 3

ContentsISSUE 5: SPRING 2020

From the Editor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .2

News from the neurology community . . . . . . . . . . . . . . . . . . . . 4

Review• Gut microbiota and Parkinson’s disease: background and rationale of the SymPD study - Valentina Leta & K Ray Chaudhuri . . . . . . . . . . . . . . . . . . . 10

• The Hawking Annual MND Lecture 2019: Nutrition in MND - could getting it right make a difference? . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

• Hypnosis & Functional Neurological Symptom Disorder (FND) - Jason Price . . . . .12

• Exercise and physical activity: Physiotherapists’ perspective - Andrea M. Stennett . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14

Neuroncology• The brain tumour patient experience of ketogenic diet therapy - Susan Wood, Catherine Zabilowicz . . . . . . . . . . . . . . . . . . . . . . . . . . .16

• Improving quality of life for people living with high grade brain tumours - Alison Kelly .20

• Cancer and the ketogenic diet: a current perspective - Louise Henry . . . . . . . . . 21

• It’s your future…and allied healthcare professionals are here to help you make everything of it that you can - Helen Spear . . . . . . . . . . . . . . . . . . . . . .23

• Life after a brain tumour - Tracy Posner . . . . . . . . . . . . . . . . . . . . . . . .24

• Living through and learning from a brain tumour experience - Neil Bindemann . . .25

Service Development• More than specialists: how unique education creates clinical leaders and transforms services - MS Academy. . . . . . . . . . . . . . . . . . . . . . . . .26

• Headache, migraine, chronic pain: making a difference in just 100 days – Linda Charles-Ozuzu. . . . . . . . . . . . . . . . . . . . . . . . .29

• Showcasing the management of complex neuro conditions in the community - P-CNS Conference report . . . . . . . . . . . . . . . . . . . . .30

NeurodigestPublished by Whitehouse Publishing, in partnership with the Primary Care and Community Neurology Society

PUBLISHER/ADVERTISINGRachael HansfordWhitehouse Publishing, 1 The Lynch, Mere, Wiltshire, BA12 6DQT.01747860168•M. 07989 470278E. [email protected] PRINTED BYStephens & George Tel. 01685 388 888

Copyright: All rights reserved; no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a license permitting restricted photocopying issued in the UK by the copyright Licensing Authority.Disclaimer: The publisher, the authors and editors accept no responsibility for loss incurred by any person acting or refraining from action as a result of material in or omitted from this magazine. Any new methods and techniques described involving drug usage should be followed only in conjunction with drug manufacturers’ own published literature. This is an independent publication - none of those contributing are in any way supported or remunerated by any of the companies advertising in it, unless otherwise clearly stated. comments expressed in editorial are those of the author(s) and are not necessarily endorsed by the editor, editorial board or publisher. The editor’s decision is final and no correspondence will be entered into.

News reporterChris Jutting, Freelance Journalist

NEWS

NewsAll the following News articles with the links to the stories behind the headline can be accessed online at www.neurodigest.co.uk.

GENERAL

NEWS: Lyme Disease: chronic illness is rare, say experts - BMJhttps://bit.ly/2ujGyak

Patients should be wary of using non-validated tests to diagnose Lyme Disease, said experts attending an October Science Media Centre briefing on the disease 1. Consultant microbiologist Matthew Dryden said that an increased, disproportionate public awareness of the rarer side effects of Lyme Disease has led to the spread of misinformation about chronic or ‘post-treatment’ symptoms of Lyme Disease. Consultant in tropical diseases Sarah Logan said that the long-term use of antibiotics by people who believe they have chronic Lyme Disease is more harmful than the effects of the disease itself.

STUDY: Prevalence and associated physical symptoms of depressive and anxiety symptoms in neurology outpatient clinic - BMJhttps://bit.ly/2RgwLL7

In this observational study, a random sample of 765 patients at neurology outpatient clinics in Shanghai were assessed using questionnaires to see whether a link could be made between neurological symptoms and the occurrence of depression and anxiety2. The authors found a correlation between the number of physical symptoms reported and the occurrence of depression and anxiety-related symptoms. More research is required to elucidate any link.

REVIEW: Dizziness demystified - BMJhttps://bit.ly/36j4Heq

This review article covers the latest information about the most common presentations and diagnoses under the ‘dizziness’ umbrella and acts as a guide for diagnosing professionals3. The four most common presentations are covered in detail and linked with their possible diagnoses, which include Ménière’s disease, vestibular migraine and cerebellar infarction.

REVIEW: Recent advances in treatment for narcolepsy - Therapeutic advances in Neurological Disordershttps://bit.ly/2tvsydK

An improved understanding of the causes of narcolepsy has led to an increase in the number of available pharmacological treatments for the sleep disorder, which has recently been reclassified into Narcolepsy Type 1 (NT1) and Narcolepsy Type 2 (NT2). Much more is known about the pathophysiology of NT1, with hypocretin/orexin (ORX) neurons being lost through

what is thought to be an autoimmune process. This review article gives an overview of the newest pharmacological treatments for narcolepsy, including some new immune-based therapies4.

REVIEW: Speech and language therapy approaches to managing primary progressive aphasia - Practical Neurology/BMJhttps://bit.ly/38x2e1I

This article provides an overview of the current state of access to speech and language therapy services in the UK, USA and Australia for people with primary progressive aphasia (PPA)5. PPA is a term for a group of neurodegenerative diseases which progressively impair speech and may also cause the development of a motor disorder. The authors conclude that routine referral of people with PPA for speech and language therapy interventions could help to maintain their independence for longer.

REVIEW: Essential tremor: a nuanced approach to the clinical features - Practical Neurology/BMJhttps://bit.ly/2REXWhJ

This discussion of the common presentations of essential tremor aims to distinguish the disorder from other commonly comorbid movement and cognitive disorders6. These include Parkinson’s disease and dystonia. The article includes discussion of 13 common symptoms and videos of patients undergoing tests for essential tremor.

PROFESSIONAL PERSPECTIVE: Dissociative (non-epileptic) seizures: tackling common challenges after the diagnosis - Practical Neurology/BMJhttps://bit.ly/2GcAQde

Professor Markus Reuber of the Royal Hallamshire Hospital’s Academic Neurology Unit details his approach to patient care following diagnosis of dissociative seizures7. He lists some common questions and concerns that his patients have and offers ideas about how to answer them.

REVIEW: Blood pressure and the brain: the neurology of hypertension - Practical Neurology/BMJhttps://bit.ly/3atpwXU

There is an as-yet-unclear pathway between the brain and the occurrence of hypertension8. This article gives an overview of the disease and some possible neurological causes and effects of hypertension and advocates early diagnosis, monitoring and treatment to sustain brain health.


NEWS


NewsREVIEW: Language and language disorders: neuroscience to clinical practice - Practical Neurology/BMJhttps://bit.ly/2TLN980This review of language disorders includes an overview of the historic models of understanding of aphasia from the mid-19th century to the modern day9. Drawing on this history, the authors present an up-to-date guide to assessment, treatment and rehabilitation of aphasia, before detailing some of the prospects for new approaches to language recovery.

PARkiNsoN’s

REVIEW: Can you really prevent Parkinson’s? - Mediumhttps://bit.ly/2NNkJqy

Parkinson’s UK research communications manager Dr Beckie Port details and debunks nine commonly-cited preventative measures against Parkinson’s (some evidence-based and others not)11. Be sure to read beyond the slightly misleading subheadings—for instance, while point 4 is titled ‘avoid sugar’, the summary reveals that there is ‘little evidence that avoiding sugar completely would prevent the condition’. However, the article is a useful guide to the evidence base for these claims.

GUIDANCE: Parkinson’s and protein — what’s the connection? - Medium

https://bit.ly/2RdtJY5

This Parkinson’s UK article responds to a trend towards low-protein and protein-avoidant diets for Parkinson’s disease by explaining how Levodopa transports dopamine across the blood-brain barrier12. Protein competes with Levodopa for bloodstream absorption in the small intestine, which has led some to infer that people with Parkinson’s should cut protein out of their diet entirely. Parkinson’s UK recommends against this approach, saying instead that patients should consult their doctors and consider their symptoms before making any changes to their diet.

REVIEW: Falls assessment and management for patients with Parkinson’s disease - GMhttps://bit.ly/3azi3X9

Providing a comprehensive guide to falls assessment and bone health investigation, this is a useful guide for frontline medical professionals and those involved in the care of people with Parkinson’s disease13. People with Parkinson’s disease have an increased risk of osteoporotic fractures, so the authors recommend carrying out blood tests and prescribing bisphosphonates to build up vitamin D and calcium levels.

NEWS: Music map launched to help alleviate distressing symptoms of dementia - GMhttps://bit.ly/2Rgj7Ic

A national campaign to provide greater access to music for people with dementia is collecting information for its ‘music map’ of dementia-focused music therapy services10. The map is being launched in response to a perceived lack of centralised information about local musical events and services for people with dementia.

REVIEW: Non motor symptoms of Parkinson’s disease - GM

https://bit.ly/2tIBRHd

As Parkinson’s is a multisystem disease, there are many non-motor symptoms (NMS) of Parkinson’s disease as well as the more commonly-recognised motor symptoms14. Here, the authors take us through some of the most common neuropsychiatric, gastrointestinal, sensation-related and sleep-related symptoms, among others.

REVIEW: Mild cognitive impairment in Parkinson’s disease - GM

https://bit.ly/2NMb97t

A common non-motor complication of Parkinson’s disease is mild cognitive impairment (PD-MCI)15. However, widely-accepted assessment tools and methods for screening are currently lacking. This guide to PD-MCI provides an overview of its main features and helps to steer medical professionals through diagnosis and management.

NEWS: Changes in the serotonin system could diagnose Parkinson’s disease before symptoms - GM

https://bit.ly/2TNrvQL

STUDY: Serotonergic pathology and disease burden in the premotor and motor phase of A53T∝-synuclein parkinsonism: a cross-sectional studyhttps://bit.ly/2TLyKZN

A cross-sectional study of people with a gene mutation known to cause early onset of Parkinson’s disease has found that serotonergic pathology precedes dopaminergic pathology and motor symptoms as an early sign of Parkinson’s progression16. They anticipate that molecular imaging of serotonin transporters might therefore be a useful screening tool for those at risk of Parkinson’s disease.

NEWS

NewsEPiLEPsY

STUDY: Prognostic patterns and predictors in epilepsy: a multicentre study (PRO-LONG) - BMJhttps://bit.ly/30JgNMX

This study of a cohort of 1006 adults and children with epilepsy used data from Italian epilepsy centres to follow each individual for at least 10 years17. The authors aimed to identify and describe the long-term prognosis of epilepsy in their cohort, concluding that even long-term remission from seizures did not exclude the possibility of relapse.

STUDY: Cannabis use is both independently associated with and mediates worse psychosocial health in patients with epilepsy - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/2RCwzVD

This Canada-based cross-sectional study of patients at an epilepsy clinic in Calgary focuses on a supposed relationship between cannabis use and psychosocial health18. 337 patients at the clinic reported whether or not they used cannabis and filled out the patient-reported outcome measures (PROMs) questionnaire. Using the data, the authors found a correlation between cannabis use and higher odds of depression, lower quality of life, higher perceived epilepsy disability and lower satisfaction with AEDs among the patients surveyed.

REVIEW: Seizures and movement disorders: phenomenology, diagnostic challenges and therapeutic approaches - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/2v3tRkf

Seizures and movement disorders are two distinct presentations of epilepsy with overlapping phenomenology but differing pathophysiology19. This review aims to inform accurate diagnosis of movement disorders in order to better treat their underlying causes, also offering a guide to treatments and their side-effects.

MULTiPLE sCLERosis

REVIEW: Progressive multiple sclerosis: latest therapeutic developments and future directions -Therapeutic Advances in Neurological Disordershttps://bit.ly/2uhAEqd

Here, the latest developments in treatments for progressive MS are detailed20. These include B-cell- and S1P receptor-targeted medications, and medications which restore the immune system and promote remyelination. The article also lists some experimental trials of treatments for progressive MS.

STUDY: Symptomatology and symptomatic treatment in multiple sclerosis: Results from a nationwide MS registry - Multiple Sclerosis Journalhttps://bit.ly/2RdLBCi

Using data from the German MS Registry on 35,755 patients from 148 MS centres, the authors analysed data on MS symptoms, disease progression and disease course to find links to neuropsychological symptoms21. Nearly a third of patients reported fatigue within the first two years of disease, a symptom that the authors claim is currently poorly-treated in people with MS. They also found that sexual dysfunctions were underreported among their cohort.

STUDY: Psychological resilience is linked to motor strength and gait endurance in early multiple sclerosis - Multiple Sclerosis Journalhttps://bit.ly/2G8Iwx3

This case-control study of the effects of psychological resilience in early MS compared 185 patients with early MS to 50 matched healthy controls22. The goal was to assess whether psychological resilience, as determined on the Connors-Davidson Resilience Scale (CDRS-10), could explain differential cognitive and motor function in early MS. The authors found an association between high psychological resilience and better motor performance on the Multiple Sclerosis Functional Composite (MSFC) measure in the group with MS, but this was also observed in the healthy controls, suggesting that the link between psychological resilience and motor function is non-disease-related.

STUDY: A randomised double-blind placebo-controlled feasibility trial of flavonoid-rich cocoa for fatigue in people with relapsing and remitting multiple sclerosis - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/38np2ka

The effects of flavonoid-rich cocoa drink on fatigue in people with MS were measured in this feasibility study for a larger trial23. However, this being a feasibility study, the small sample size means that the results do not reach statistical significance and further research would be required to establish a causal link between flavonoid-rich cocoa and fatigue relief in MS.

STUDY: Dissociable cognitive patterns related to depression and anxiety in multiple sclerosis - Multiple Sclerosis Journalhttps://bit.ly/37cotcO

Anxiety and depression are much more common in people with MS than in the general population24. This cross-sectional study


NEWS


Newsused data on 255 people with relapsing-remitting MS from two cohorts (RADIEMS and MEM CONNECT) to measure the incidence of different MS symptoms against incidence of anxiety and depression. The authors found that lower anxiety was associated with better nonverbal memory and lower depression was related to better attention and processing speed in both cohorts. The study is limited by its cross-sectional design; however, the authors aim to conduct a longitudinal study based on ongoing data collection from the two cohorts.

REVIEW: Cannabis and multiple sclerosis - Practical Neurology/BMJhttps://bit.ly/2uiUIsiThe use of medical cannabis has been in the press since the home office licensed its use in the UK in 2018. As of November 2019, only 18 prescriptions had been made since legalisation. However, with larger-scale trials of medical cannabis for chronic pain in the pipeline, doctors and prescribing professionals are likely to need a wider knowledge of the subject in the coming years. This article explores some of the more common medicinal forms of the drug and their interactions with common MS symptoms, and recommends further research25.

.BRAiN iNJURY/sTRokE

NEWS: Former footballers are more likely to die from neurodegenerative disease, study finds - BMJhttps://bit.ly/2Gbfvkb

STUDY: Neurodegenerative Disease Mortality among Former Professional Soccer Players - New England Journal of Medicinehttps://bit.ly/38rHIiF

A retrospective cohort study focusing on neurodegenerative disorders in former Scottish football (soccer) players has revealed a significantly increased rate of mortality from neurodegenerative diseases when compared to the general population26. The study matched 7676 former players with 23,028 controls from the Community Health Index (CHI), which holds health and demographic data on the Scottish population.

REVIEW: Understanding neurodegeneration after traumatic brain injury: from mechanisms to clinical trials in dementia - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/38sfvIB

Roughly five percent of all dementia cases may have their root in traumatic brain injury (TBI)27. TBI is also associated with an increased risk of neurodegenerative diseases including Alzheimer’s and Parkinson’s disease among others. The authors detail the ways in which TBI triggers neurodegeneration, giving advice on investigation and common clinical features. They hope that phase II and phase III clinical trials studying the biomarkers of neurodegeneration will help to find treatments for the condition.

REVIEW: Neuropsychological outcomes following traumatic brain injury - Practical Neurology/BMJhttps://bit.ly/3atrc3E

The exaggeration of TBI in patient records and false attribution of neuropsychological symptoms to TBI can lead to a ‘significant

detrimental impact’ on individuals’ recovery, claim the authors of this article28. Many factors contribute to recovery post-TBI, not all of them related to the injury itself; therefore the speed of recovery does not always indicate the severity of the injury. This article advocates determination of TBI outcomes based on pathoanatomic classification using neuroimaging.

NEWS: New study highlights ‘alarmingly high’ rate of visual problems in stroke survivors - GMhttps://bit.ly/2NNBBNL

STUDY: High incidence and prevalence of visual problems after acute stroke: An epidemiology study with implications for service delivery - PLoS Onehttps://bit.ly/2NR1D2W

This longitudinal study of patients at stroke units in the North West of England has found a high incidence and point prevalence of visual problems among acute stroke survivors29. Over a one-year period, 1295 people were admitted to the units, with around half of these undergoing assessment of visual function. Incidence of new onset visual sequelae due to stroke occurred in nearly half of all admissions, and 60% of stroke survivors.

PROFESSIONAL PERSPECTIVE: Post-traumatic benign paroxysmal positional vertigo - Practical Neurology/BMJhttps://bit.ly/2Gb2XJN

After a minor head injury due to a skiing accident, clinical neurologist Dr Colin Mumford began to experience severe rotational vertigo and nausea30. His symptoms were indicative of trauma-induced benign paroxysmal positional vertigo (BPPV), and after being assessed and treated by two of his colleagues, his nausea was replaced by a visual disturbance. Here, he describes his experience of BPPV and shares his understanding of the symptomology.

NEWS

NewsHEADACHE/PAiN

REVIEW: Managing cluster headache - Practical Neurology/BMJhttps://bit.ly/2RfmO0r

There are a number of existing treatments prescribed for management and prevention of cluster headaches, with more on the horizon31. This article gives advice regarding diagnosis and examines the evidence base for the most common treatments, as well as listing some of the newer developments in cluster headache treatment.

REVIEW: Medication-overuse headache — BMJ review - Practical Neurology/BMJhttps://bit.ly/2NLglIM

Medication-overuse headache is a complex condition to diagnose and treat. Overuse of triptans and opioids appears to be a common risk factor for the condition, but overuse of any analgesic can cause headache onset32. This article is intended as a guide for doctors through the common features, diagnosis, prevention and treatment of medication-overuse headache, including patient-focused advice on drug withdrawal.

SYSTEMATIC REVIEW: Non-invasive neuromodulation for migraine and cluster headache: a systematic review of clinical trials - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/2G8KZYa

This systematic review assesses the design of 71 clinical trials of non-invasive neuromodulation devices for migraine and cluster headache33. The authors measure the design of each trial against the guidelines outlined by the International Headache Society (IHS) and conclude that the designs of clinical trials of non-invasive vagus nerve stimulation are generally better than those of other non-invasive neuromodulation treatments. However, because of the heterogeneity of the trial designs, the reviewers were unable to collate the positive and negative findings from each trial.

STUDY: Effects of onabotulinumtoxinA treatment for chronic migraine on common comorbidities including depression and anxiety - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/2vbSlbg

This analysis of trial data from the COMPEL trial of onabotulinumtoxinA for chronic migraine has found that trial participants with depression and anxiety reported a decrease in depression and anxiety-related symptoms over the course of the trial34. This was determined by analysing data from questionnaires answered by participants five times over 108 weeks. This analysis is limited by its post-hoc design, the non-clinical definitions of

depression and anxiety used and the non-randomisation of the original trial. However, it provides some grounds for further research.

STUDY: Onset of efficacy and duration of response of galcanezumab for the prevention of episodic migraine: a post-hoc analysis - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/2Rdvq7T

Before NICE began its technology appraisal of galcanezumab for migraine prevention last year, Eli Lilly sponsored this post-hoc analysis of the speed with which people with episodic migraine respond to the drug35. They found signs that onset of efficacy occurs within one week of injection. However, this analysis is limited by the fact that it was not included within the design of the original trial.

PROFESSIONAL PERSPECTIVE: Intense rehabilitation therapy produces very large gains in chronic stroke - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/2RfuHTP

STUDY: Intensive upper limb neurorehabilitation in chronic stroke: outcomes from the Queen Square programme - Journal of Neurology, Neurosurgery and Psychiatry/BMJhttps://bit.ly/2v9DNc1

Researchers found large clinical improvements in upper limb impairment and activity in stroke patients in a single-service observational study of therapy interventions for stroke36. Patients admitted for stroke at UCLH’s National Hospital for Neurology and Neurology underwent physiotherapy and occupational therapy over a 90-hour programme. The authors recommend that further, more extensive clinical trials be undertaken to elucidate the link between therapy interventions and upper limb rehabilitation post-stroke.

NEws fRoM NiCE

CLINICAL KNOWLEDGE SUMMARY: Migraine: Clinical Knowledge Summary - NICEhttps://bit.ly/2Gaz1gJ

NICE reviewed their migraine Clinical Knowledge Summary back in April last year, updating the document with new guidelines and references to key clinical trials37. There has also been minor changes to the recommendations based on updated NICE guidance from 2015. The next review is planned for 2024.


NEWS


NewsCLINICAL KNOWLEDGE SUMMARY: Sleep disorders - shift work and jet lag: Clinical Knowledge Summary - NICEhttps://bit.ly/3ayQNIo

A similar review has been conducted for the shift work disorder (SWD) and jet lag disorder (JLD) Clinical Knowledge Summary38. The next review is planned for 2024.

QUALITY STANDARD: NICE quality standard on dementia - NICEhttps://bit.ly/2sR5sxO

This quality standard replaces the earlier 2010 and 2013 quality standards on dementia, and reduces the number of quality statements from ten to seven39. Among the new statements are recommendations that people with dementia have a single practitioner to oversee their care and that before being given treatment for distress they should be properly assessed to ascertain the cause(s) of distress.

GUIDELINE: NICE guideline: Suspected neurological conditions: recognition and referral - NICEhttps://bit.ly/30JW0c8

NICE first published this guideline in May 201940. It constitutes comprehensive recognition and referral guidance for a range of symptoms where neurological causes are suspected. These include but are not limited to blackouts, dizziness, cognitive deterioration and speech problems. The guideline has separate sections for adults and children.

NEWS: Diagnose and treat Lyme disease if bull’s eye rash is present, says NICE - NICEhttps://bit.ly/2RDvVaf

Doctors should feel confident in diagnosing Lyme whenever a characteristic bull’s eye rash is present, says NICE’s quality standard on Lyme disease41. Waiting for blood test results unnecessarily delays treatment, with Lyme disease antibodies appearing six to eight weeks after a bite.

MoToR NEURoNE DisEAsE

STUDY: Safety and Efficacy on Spasticity Symptoms of a Cannabis Sativa Extract in Motor Neuron Disease (CANALS) https://bit.ly/2RDHuhL

Clinical trials link: https://bit.ly/38rU4aI

Nabiximols, a cannabis extract, has been shown to have a positive effect on spasticity in motor neurone disease in a phase II, proof-of-concept trial42. The two-year trial involved 60 participants (30 receiving nabiximols and 30 placebo) and tested the botanical drug for efficacy and tolerability. No severe adverse effects were recorded during the trial and a positive improvement was registered on the Modified Ashworth Scale (MAD) measure of spasticity when compared to placebo. This is, the authors claim, the first randomised controlled trial of a pharmacological treatment for spasticity in motor neurone disease.

ABSTRACT: Reducing length of stay for patients with Motor Neurone Disease admitted to a Specialist Ventilation Unit - European Respiratory Journalhttps://bit.ly/2RC3f1C

This abstract retrospectively measures the effects of a service evaluation on hospital stay length for MND patients at a specialist ventilation unit43. The authors claim that by reducing transfers from other hospitals and facilitating admissions direct from home, they were able to reduce median stay length from five days to three. Only the abstract is available, so a fuller examination of the claims and methodology is not possible.

STUDY: Patients’ perspectives of multidisciplinary home-based e-Health service delivery for motor neurone disease - Disability and Rehabilitation: Assistive Technologyhttp://bit.ly/37kiFxS

MND multidisciplinary clinics do not routinely offer telehealth care options to patients44. This small-scale study of twelve patients with MND shows that most participants had access to IT and regularly used IT to communicate with family and friends. Over 90 percent owned a phone and had an email account. A study with a larger sample size is necessary before any conclusions can be made about the possible effect of telehealth services on MND care.

ABSTRACT: Experiences of being diagnosed with motor neuron disease: “I just want to know” - Collegianhttp://bit.ly/36hx1Oq

An interview-based assessment of people’s experiences of living with MND found that four themes emerged in the answers given45. Interviewees were concerned with: Barriers to early diagnosis; their humane treatment; regaining control of their lives; and support. Only the abstract is available for this paper.

RefeRencesAll references in the news articles are available to view online at www.neurodigest.co.uk. https://bit.ly/21UYyfd


Dr Valentina Leta is a Neurologist and PhD Clinical Research Fellow at King’s College London and King’s College Hospital London.1,2

Gut microbiota and Parkinson’s disease: background and rationale of the SymPD study

REVIEW

Prof K Ray Chaudhuri is the Clinical Director of the

Parkinson’s Foundation Centre of Excellence,

King’s College Hospital and Professor of Movement

Disorders at King’s College London.1,2

In 1817 the London physician, James Parkinson, originally described the occurrence of gastrointestinal dysfunction in what he called the shaking palsy later termed Parkinson’s disease (PD): “….so much are the actions of the muscles of the tongue, pharynx, and colon impeded by impaired action and perpetual agitation, that the food is with difficulty retained in the mouth until masticated; and then as difficultly swallowed. […] The bowels, which had been all along torpid, now, in most cases, demand stimulating medicines of very considerable power: the expulsion of faeces from the rectum sometimes requiring mechanical aid”1. Nevertheless, gastrointestinal dysfunction remains relatively under-researched2. Constipation is one of the most prevalent non-motor conditions of PD observed across all stages of the disease with a prevalence ranging from 50 to 80%3. Constipation is also regarded as one of the prodromal features of Parkinson’s and can precede the occurrence of motor symptoms by up to 20 years4 and thus is one of the recognised risk factors for the development of this disease5. Deposits of misfolded alpha-synuclein, the pathological hallmark of PD, have been found in the gastrointestinal tract of people with Parkinson’s even in the prodromal phase6. Recent animal and human studies also suggest that in PD the pathological process might start in the gut, which is a gateway to the environment, and spread to the brain via the vagus nerve (the so-called gut-brain axis), although there is also evidence that the spread can occur from the brain to the gut as well7. In the last decade attention has focused on the role of the gut microbiota on health and diseases, including PD. The 100-trillion bacteria population interacts with our body by modulating immune and metabolic responses as well as the activity of the nervous system8. Alterations in the gut microbiota (gut dysbiosis) have been recently shown in PD and the abundance of different types of bacteria seems to positively correlate with particular clinical phenotypes9. In addition, gut dysbiosis has also been reported in idiopathic Rapid Eye Movement Sleep Behaviour Disorder (RBD) cases, which have a > 80% rate of phenoconversion to synucleinopathies, including PD, after 8-10 years10. There is evidence that proinflammatory dysbiosis is present in PD patients and gut dysbiosis has been proposed as a possible pathophysiological event in this condition. In some susceptible

individuals inflammatory triggers may alter the gut microbiota which, in turn, would increase the gut permeability (the so-called ‘leaky gut’) and increase expression as well as aggregation of misfolded alpha-synuclein transmitted via the vagus nerve to the brain11. Chronic intestinal inflammation secondary to alterations of gut microbiota may also lead to systemic inflammation and altered blood brain barrier leading to central neuroinflammation, a known pathophysiological process in Parkinson’s11. Gut microbiota alteration may also underpin some key non-motor features of Parkinson’s such as constipation and has already been shown to exist in the prodromal stage of Parkinson’s10 .Recently, in line with other disorders where gut microbiota may be abnormal, faecal transplantation has been proposed as a possible treatment strategy in Parkinson’s. Faecal transplantation has proved to be neuroprotective in a mouse animal model of PD and results of ongoing clinical trials are awaited with interest12. Nevertheless, the process of faecal transplantation may be difficult and needs many regulatory approvals and safety checks. An alternative and easy-to-use option could be the intake of probiotics. Recent studies have shown that the use of probiotics may improve constipation in PD patients as well as reduce the MDS-UPDRS total score, a validated scale which takes into account motor dysfunction, non-motor symptoms as well as their impact on quality of life13. Symprove is an orally active probiotic, which unlike other commercially available probiotics, can reach the gut and has been shown to be effective for gastrointestinal symptoms in irritable bowel syndrome (known to be prevalent in PD14) and other gastrointestinal conditions15, 16. In addition, since the gut microbiota is inextricably linked to the immune system and probiotics have shown anti-inflammatory properties17, it is possible that Symprove can modify the level of blood-based systemic inflammatory markers typically linked to the ‘leaky gut’ condition.Anecdotal reports from individual case studies at the Parkinson’s Centre of Excellence at King’s College Hospital suggest an improvement in motor and non-motor aspects of Parkinson’s after intake of Symprove for a variable period. However, currently there are no studies which have addressed a possible beneficial effect of Symprove in PD in a controlled manner and potentially, if successful, this simple management strategy may have a major

1 King’s College London, Department of Neurosciences, Institute of Psychiatry, Psychology & Neuroscience, De Crespigny Park, London, SE5 8AF2 Parkinson’s Foundation Centre of Excellence, King’s College Hospital, Denmark Hill, London, SE5 9RS


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impact on PD patients and even possible use in the prodromal state.We are running a UK-led randomised, double blind, placebo-controlled study involving 60 PD patients with constipation (the SymPD study). All patients will receive 70 ml of Symprove or placebo, taken orally once a day, over a 3-months period. This study will aim to improve our understanding of the mechanisms underlying the possible effects of probiotics on the gastro-intestinal, nervous and immune system in people with Parkinson’s. The knowledge gained from this study will help us understand the involvement of the gut and gut health in PD. This study, which is partially funded by Parkinson’s UK, is run by the Parkinson’s Centre of Excellence King’s College Hospital, London, and we anticipate obtaining some preliminary results this year.Disclosures: This study was independently designed. Symprove Ltd supplied the product free of charge. This study is supported by Parkinson’s UK.

RefeRences:

1. Hurwitz B. Urban observation and sentiment in James Parkinson’s essay on the shaking Palsy (1817). Lit Med. 2014 spring;32(1):74-104.

2. chaudhuri K Ray, Titova n. nonmotor Parkinson’s: The Hidden face (2017). Volume 133-134.

3. Qiu-Jin Yu, shu-Yang Yu, Li-Jun Zuo, Teng-Hong Lian, Yang Hu, Rui-Dan Wang, Ying-shan Piao, Peng Guo, Li Liu, Zhao Jin, Li-Xia Li, Piu chan, sheng- Di chen, Xiao-Min Wang, Wei Zhang. Parkinson disease with constipation: clinical features and relevant factors sci Rep. 2018; 8: 567.

4. Abbott RD, Petrovitch H, White LR, Masaki KH, Tanner cM, curb JD, Grandinetti A, Blanchette PL, Popper Js, Ross GW. frequency of bowel movements and the future risk of Parkinson’s disease. neurology. 2001 Aug 14;57(3):456-62.

5. schrag A, Horsfall L, Walters K, noyce A, Petersen I. Prediagnostic presentations of Parkinson’s disease in primary care: a case-control study. Lancet neurol. 2015 Jan;14(1):57-64.

6. shannon KM, Keshavarzian A, Dodiya HB, Jakate s, Kordower JH. Is

alpha-synuclein in the colon a biomarker for premotor Parkinson’s disease? evidence from 3 cases. Mov Disord. 2012 May;27(6):716-9.

7. Breen DP, Halliday GM, Lang Ae. Gut-brain axis and the spread of _-synuclein pathology: Vagal highway or dead end? Mov Disord. 2019 Mar;34(3):307-316.

8. Hollister eB, Gao c, Versalovic J. compositional and functional features of the gastrointestinal microbiome and their effects on human health. Gastroenterology. 2014 May;146(6):1449-58.

9. scheperjans f, Aho V, Pereira PA, Koskinen K, Paulin L, Pekkonen e, Haapaniemi e, Kaakkola s, eerola-Rautio J, Pohja M, Kinnunen e, Murros K, Auvinen P. Gut microbiota are related to Parkinson’s disease and clinical phenotype. Mov Disord. 2015 Mar;30(3):350-8.

10. Heintz-Buschart A, Pandey U, Wicke T, sixel-Döring f, Janzen A, sittig- Wiegand e, Trenkwalder c, Oertel WH, Mollenhauer B, Wilmes P. The nasal and gut microbiome in Parkinson’s disease and idiopathic rapid eye movement sleep behavior disorder. Mov Disord. 2018 Jan;33(1):88-98.

11. Houser Mc, Tansey MG. The gut-brain axis: is intestinal inflammation a silent driver of Parkinson’s disease pathogenesis? nPJ Parkinsons Dis. 2017 Jan 11;3:3.

12. sun Mf, Zhu YL, Zhou ZL, Jia XB, Xu YD, Yang Q, cui c, shen YQ. neuroprotective effects of fecal microbiota transplantation on MPTP- induced Parkinson’s disease mice: Gut microbiota, glial reaction and TLR4/Tnf-_ signaling pathway. Brain Behav Immun. 2018 May;70:48-60.

13. fang X. Microbial treatment: the potential application for Parkinson’s disease. neurol sci. 2019 Jan;40(1):51-58.

14. Mishima T, fukae J, fujioka s, Inoue K, Tsuboi Y. The Prevalence of constipation and Irritable Bowel syndrome in Parkinson’s Disease Patients According to Rome III Diagnostic criteria. J Parkinsons Dis. 2017;7(2):353-357.

15. sisson G, Ayis s, sherwood RA, Bjarnason I. Randomised clinical trial: A liquid multi-strain probiotic vs. placebo in the irritable bowel syndrome- -a 12 week double-blind study. Aliment Pharmacol Ther. 2014 Jul;40(1):51-62.

16. Kvasnovsky cL, Bjarnason I, Donaldson An, sherwood RA, Papagrigoriadis s. A randomised double-blind placebo-controlled trial of a multi-strain probiotic in treatment of symptomatic uncomplicated diverticular disease. Inflammopharmacology. 2017 May 20.

17. suez J, Zmora n, segal e, elinav e. The pros, cons, and many unknowns of probiotics. nat Med. 2019 May;25(5):716-729.

The Hawking Annual MND Lecture 2019: Nutrition in MND - could getting it right make a difference?

Each year the prestigious Hawking Annual Lecture brings the latest thinking in the field of motor neurone disease to a wide audience. In 2019, the focus was on the importance of nutrition in effective MND care. The 2019 lecture attracted a large, varied audience both physical and on live stream. It was led by Professor Christopher McDermott, Professor of Translational Neurology at SITraN and a Consultant Neurologist at the Sheffield Teaching Hospitals Foundation NHS Trust. Professor McDermott explored the current and emergent findings from the latest research into

nutrition for MND.Through the evening, Professor McDermott discussed how gastrostomy has been found to be an effective way to manage malnutrition and resulting weight loss in people living with MND. The outcomes from the Prospective Multi-Centre Evaluation of Gastrostomy in Patients with Motor Neurone Disease (ProGas) study suggested optimal method, and timing for, gastrostomy insertion

for people living with MND. He also outlined, however, that research also suggested that lack of information on nutrition after gastrostomy leads to continuing weight loss. The PostGas study has reviewed current practices of post-gastrostomy nutritional care and explored reasons why some patients continue to lose weight after gastrostomy. HighCALS is an ongoing programme which will develop an intervention to improve dietary support for people with MND. This project will also seek to conduct an effectiveness and cost effectiveness study to investigate whether the HighCALS intervention developed, can prolong life in people with MND. Professor McDermott concluded his fascinating lecture with a look at future developments in the field of MND. To see this stimulating lecture – please go to www.rcnevents.tv. You will need to register to watch the film but it is free to do so.A date for your diary: In 2020 the lecture will take place on Wednesday 25 November, 5.30pm RCN HQ, 20 Cavendish Square, London W1G 0RN.

Professor Christopher McDermott


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Functional neurological symptoms (FNS) are common and account for a significant proportion of new presentations to Neurology outpatients (as a single or co-morbid presentation)1. These symptoms manifest as behaviours seen in conditions of neurological disease or injury (such as dystonia, paralysis, movement disturbance, seizures), but without an identifiable organic pathogen or structural defect which could produce such symptoms. These conditions are also known as conversion or dissociative disorders in psychiatric diagnostic terms. ICD-11 now uses the diagnostic label ‘Dissociative Neurological Symptom Disorder’, although ‘Functional Neurological Disorder’ (FND) is currently the most commonly used term. Increasingly, patients with FNS have presented to neurology with these neurological symptoms, which has eventually led to a paradigm shift in understanding FNS, with an emerging movement to understand these conditions as resulting from cognitive neuroscience principles of how the brain processes ‘data’, and what happens when these processes go wrong. This does not discount psychosocial processes, it just explains a psychobiological mechanism by which FNS can be created and maintained, which had been absent from psychopathological theories.The concept of the ‘Bayesian Brain’ in FNS is a contemporary cognitive neuroscience model, which applies particularly well to motor/movement FNS2. The model proposes that the brain and mind develops patterns of activation based upon prior experiences, which in turn allow these systems to make accurate predictions about cause and effect. If these predictions are ‘fit for purpose’, they minimise systemic surprise (i.e. an unexpected result), which produces disequilibrium – the antithesis to a system’s ‘desire’ to maintain homeostasis. A well balanced system will have reasonably accurate predictive capabilities, based upon flexible ‘top-down’ models of ourselves and the world (i.e. ‘schemas’ or specific functioning neural networks), which can be finessed through ongoing experience, by validating against incoming, ‘bottom-up’ data (i.e. sensory feedback from the resulting experience). If the ‘bottom-up’ data supports the predictions of the ‘top-down’ model, it is strengthened. If the ‘bottom-up’ data is incongruent the model has to either adapt to incorporate the new information, or ‘ignore’ the incongruency to maintain

Hypnosis & Functional Neurological Symptom Disorder (FND)BSCAH Annual Conference, West Sussex Hospital, June 2019

homeostasis. What determines the likelihood of either action is unclear, although the likely explanation is the relative strength of the top-down or bottom-up signals. It is hypothesised that in FNS, there is a creation of an overly dominant top-down process involving an inaccurate model, which resists any incongruent bottom up feedback (to maintain homeostasis) and is therefore inflexible and unable to adapt (to functional recovery from injury, for example).Traditionally, FNS has been treated psychologically with therapies based upon psychodynamic and cognitive behaviour therapy approaches3. The emergence of the Bayesian Brain model in FNS gives us a new direction for neuropsychologically informed interventions; psychological therapies attempting to directly influence neurocognitive processes – therapies such as hypnosis.Hypnosis works with the same elements that are theorised to act as the catalysts to create and maintain FNS within the Bayesian Brain model; attention, beliefs and agency. Attention refers to the system’s ‘interest’ in what is happening - internal or external experiences. Excessive attention to ‘malfunctioning’ parts, or specific processes in the body, appear to isolate that element from normal integrated functioning (which might also be called a physical dissociation), and so creates and perpetuates a functional symptom. Inaccurate beliefs about capability of functioning can also serve to ‘feed’ the rogue representation by being complicit. Agency (and self-awareness) refers to the perception that we are engaged or involved with a process which is happening. In FNS, the affected individuals are disconnected from this sense of agency2. Both attention and agency are neural processes (i.e. have discrete neural networks), as well as cognitive (thought) processes.As FNS can be seen to result from an automatic dominant top-down process2, hypnosis involves a voluntary top-down domination of conscious perception4, involving the modulation of key neural networks which govern attention, self-awareness (including agency) and goal directed behaviours5. Therefore, we have an intervention which works on the same principles as those which are seen to maintain FNS. Contemporary hypnosis research has demonstrated that functional symptoms can be created and removed under hypnosis, with changes evidenced on brain imaging6. Hypnosis has been shown to reliably attenuate automatic ‘top down’ processes, such as word reading impulses in The Stroop Effect7. In terms of attention, hypnotic trance is a state of highly developed focused attention (or absorption), which can be voluntarily moved around to focus (or de-focus) upon different stimuli8,9 to ameliorate symptoms. Hypnosis can also modulate one’s sense of agency/self-awareness8,9. That is, under hypnosis, actions (mental, perceptual, physical) can be suggested and enacted by the individual, without a sense that the individual is volitional in the process (as occurs in motor/movement FNS). It has been found that both FNS patients and high hypnotisable patients have less (somatosensory) self-awareness on the Libet’s test10, which asks participant to gauge their awareness of an intention to make a movement, before the movement is initiated (which can give rise to a sense of involuntary action).

Consultant Clinical Neuropsychologist at The James Cook University Hospital, Middlesbrough. He is also Chair of the Policy Unit, Division of Neuropsychology, BPS, and Chair of the UK FNForum, British Neuropsychiatry Association

E: [email protected]

Dr Jason Price

Imagery and re-scripting techniques are standard CBT approaches to working with a variety of mental health issues, including phobias and trauma. These techniques help to modify a person’s maladaptive beliefs, which hinder adaptive functioning. The hypnotic state allows for a more intense imagery experience, through greater absorption/focused attention. Therefore, hypnosis can be a powerful mechanism to help an individual alter dysfunctional beliefs, by facilitating vivid therapeutic imagery11.Hypnosis for FNS has a long history, at least from the late 18th century with Jean-Martin Charcot, Sigmund Freud, Pierre Janet and others, treating ‘hysteria’. It appears to be an intervention of potential merit for FNS3 and has some well described hypnotic strategies to target specific FNS presentations12, including what might be considered ‘functional overlay’ in patients with brain injury1. With the emergence of the ‘Bayesian Brain’ FNS model, the potential benefit of hypnosis with these conditions becomes even more obvious, by highlighting that the therapeutic mechanisms of hypnosis involves those very same processes, which in FNS, cause the dysfunction. We can therefore use hypnosis to more directly ‘re-calibrate’ the dysfunctional FNS system to restore a more even ‘power balance’ between top-down and bottom-up processes, so that adaptive change can be made.

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The British Society of Clinical and Academic Hypnosis (BSCAH) is a registered charity and has been in existence in various forms since the 1950’s. All our members and trainers are health care professionals, (HCP’s). Our aim is to promote the safe use and research of medical hypnosis. We run courses for colleagues across the UK including a University Accredited Diploma Course in Birmingham. https://www.bscah.com/list-courses-and-eventsStandard Membership costs £75 annually and is open to all HCP’s and Academics with an interest in the subject.

RefeRences:

1. stone J, carson A, Duncan R, et al. Who is referred to neurology clinics?— the diagnoses made in 3781 new patients. clin neurol neurosurg. 2010; 112(9):747-751.

2. edwards MJ, Adams RA, Brown H ,Pareés I & friston KJ. A Bayesian account of ‘hysteria’. Brain. 2012; 135(11):3495-3512.

3. espay AJ, Aybek s, carson A et al. current concepts in diagnosis and treatment of functional neurological disorders. JAMA neurology. 2018; 75(9): 1132-1141.

4. Terhune DB, cleermans A, Raz A & Lynn sJ. Hypnosis and top-down regulation of consciousness. neurosci Biobehav Rev. 2017; 81(ptA): 59-74.

5. Deeley Q, Oakley DA, Toone B et al. Modulating the default mode network using hypnosis. Int J clin exp Hypn. 60(2): 206-228.

6. Pyka M, Burgmer M, Lenzen T et al. Brain correlates of hypnotic paralysis – a resting state fMRI study. neuroImage. 2011. 56: 2173-2182.

7. Raz A, Moreno-Íñiguez M, Martin L, & Zhu H . suggestion overrides the stroop effect in highly hypnotizable individuals. consciousness and cognition. 2007; 16, 331–338.

8. Oakley DA & Halligan P. Hypnotic suggestion and cognitive neuroscience. Trends cogn sci. 2009; 13(6): 264-70.

9. Kihlstrom Jf. neuro-hypnotism: Prospects for hynosis and neuroscience. cortex. 2013; 49(2): 365–374.

10. Lush P, naish, P & Dienes Z. Metacognition in mindfulness and hypnosis. neuroscience of consciousness. 2016; 1-10

11. Hackmann A, Bennett-Levy J & Holmes eA. Imagery in cognitive Therapy. 2011. Oxford: OUP.

12. Deeley Q. Hypnosis as therapy for functional neurologic disorders. In Hallet M, stone J & carson A (eds.), Handbook of clinical neurology. 2016. Amsterdam, elsevier. ch47.

FNS HypnosisAbnormal attention to mal-adaptive model of functioning

Modulates attentional ‘spotlight’

Misperception of ‘agency’ Modulates sense of agency (FND pts. and HH do worse on Libert’s test)

Maladaptive beliefs of function

Imagery ‘rescripting’

Maladaptive models of functioning ‘protected’ by selective attention processes which ‘guard’ against in-congruent data to maintain homeostasis

Modulates self-awareness – can turn on or off

SO THAT PRETTY MUCH CEMENTS THE RELATIONSHIP!

Illustrative Table

Case Study (permission has been given)Dr JP Price. Consultant Clinical Neuropsychologist

Sean is a 46 year old man with a two year history of neck pain and an atypical torticollis. He was initially assessed by a physiotherapist, and following MRI, a large lipoma was discovered in his right trapezius, which was thought to be causing some of the symptoms. It was thought that the symptoms would resolve following surgical removal of the lipoma, although the symptoms became worse and did not respond to a trial of Baclofen. He was eventually diagnosed with FND by a Neurologist. Sean could not participate in physiotherapy due to his level of pain and the exacerbation of the symptoms during therapy. He felt such a strong sense of spasm in his neck that he constantly had to forcefully support his head, by pushing his face to the opposite side of the neck spasm, meaning that he only had the use of one arm as the other was engaged in supporting his head. This obviously had a disastrous consequence for his daily functioning, including simple tasks such as not being able to butter a slice of toast.

This sensation only ceased when he was laid down in bed. His physiotherapy was stopped and he was referred to neuropsychology for intervention for his FND. At that point, Sean was only managing to work 2½ hours each week in his professional job due to the severity of the symptoms. Significant domestic distress had been noted in the referral.Following Sean’s neuropsychological assessment, the psychological issues which were noted in the referral were seen as consequences of his disability, rather than as a primary trigger to the symptoms. There were no other psychological issues which required a psychotherapeutic approach to treatment. One interesting aspect of Sean’s childhood was an unidentifiable and temporary problem he had with his neck. He said he couldn’t really recall any specific diagnosis or treatment, but saw several doctors and the problem just seemed to resolve over time. Using the ‘Bayesian brain’ model, the neuropsychological formulation was that Sean had a predisposing factor from childhood (enigmatic neck problem) that generated a dysfunctional schema of neck sensation and movement, which became less salient over time, allowing the normal pattern of functioning to return.


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Exercise and physical activity: Physiotherapists’ perspective

The development of the lipoma when Sean was an adult was seen as a trigger to reinstating the dysfunctional neck schema, which was strengthened by unusual and uncomfortable sensations in the neck/trapezius from the lipoma. Developing abnormal movement patterns as a consequence further strengthened the dysfunctional schema of neck functioning. Through discussion and demonstration of Bayesian Brain principles and how they manifest in normal and abnormal patterns of physical functioning, Sean could see the rationale of the model, and subsequently, the rationale for treatment via hypnosis. The aim of the hypnosis was to directly ‘tap’ into subconscious attentional systems to help Sean defocus from sensations from his neck, whilst attempting to perform normal movement patterns (including ‘mirror’ work), and allowing muscle groups to relax to prevent abnormal volitional tension (thus, strengthening the ‘normal’ schema of neck function). A self-hypnosis CD was made with the movement exercises, for Sean to practice at home. The intention was to get Sean to a stage where he could engage with physiotherapy to complete his physical rehabilitation. In only five sessions, over a period of two months, Sean had made sufficient progress via clinical hypnosis to be referred back to physiotherapy for further treatment. In collaboration with the physiotherapist, Sean continued to have periodic review in neuropsychology to consolidate his progress. He continued to use his self-hypnosis CD at home. After only four physiotherapy sessions over the next eight months, Sean had made a substantial recovery. He no longer had to support his head and had no observable abnormal movement patterns. At the time of writing, he still experiences some stiffness in his neck, which can become exacerbated at times with stress and muscle fatigue, but the impact on his life was minimal. He was back at work full time, gained a promotion and was back to driving. His confidence (which had previously hit a very low point) had returned, he felt more able to socialise, and he was hopeful that the remaining two planned sessions of physiotherapy and neuropsychology would see him return to his pre-morbid level of functioning.In summary, after a period of over two years of severely debilitating functional motor/movement symptoms (following

failed surgical, medication and standard physiotherapy interventions) which were eventually seen as untreatable, clinical hypnosis facilitated physical rehabilitation so that Sean could engage fully in FND informed physiotherapy to improve his symptoms to near complete recovery.

ResourcesFND Information websites: • www.neurosymptoms.org • www.nonepilepticattacks.info

FND patient support organisations: • FNDHope(https://fndhope.org) • FNDAction(www.fndaction.org.uk)

The benefits of exercise and physical activity in people with Multiple Sclerosis (MS) are widely documented. These include improved muscle strength, fitness and quality of life1,2; yet uptake is poor placing people with MS at an increased risk of developing the secondary complications associated with inactivity, such as stroke, type 2 diabetes and cardiovascular disease3,4. Indeed, there is evidence to suggest that only 20% of people with MS meet the recommended levels of physical activity3. It is therefore crucial that health professionals develop strategies to help change this trajectory as it is a public health concern. But how do we engage people with MS, a progressive neurological condition, to sustain physical activity overtime? Many attempts have been made to address this issue but with limited success. Perhaps there is a need to examine this topic from another perspective. That is, understanding the prioritisation and meaning of exercise and physical activity both from the perspective of people with MS and health professionals such as physiotherapists.

Physiotherapists, the third most contacted healthcare professionals by people with MS in the United Kingdom5, play an important role in improving health and wellbeing through the promotion of exercise and physical activity6-8.A recent study, using focus groups underpinned by the principles of framework analysis, explored physiotherapists’ interpretation of exercise and physical activity; examined physiotherapists’ views and opinions about the meanings and prioritised physical activity as reported by people with MS; and discussed the implications for clinical practice. Here physical activity was defined as “any bodily movement produced by skeletal muscles that result in energy expenditure”9 and would include domestic, occupational and sports related activities. Exercise on the other hand was defined as “a subset of physical activity that is planned, structured and repetitive”9 and aims to either improve or maintain physical fitness. Physiotherapists were asked to reflect on the prioritised


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Research Neuro-Physiotherapist with a keen interest in the management of long term neurological conditions. Her research interests include exploring the exercise and physical activity priorities of people with Multiple Sclerosis.


Andrea M. Stennett PhD

The full study can be found here: https://doi.org/10.1080/09638288.2017.1309464

exercise and physical activity practices of people with MS in the community (see table below). The full description of the study along with participants’ quotes can be found here: https://doi.org/10.1080/09638288.2019.1585969Overall four themes were developed from the analysis namely, “Blurred terminologies”, “Influencing factors for the meaning of exercise and physical activity”, “When professional expertise meets experiential expertise” and “The resolve: resolving professional and experiential tensions”. The study highlights that physiotherapists drew on the underlying physiological attributes of exercise (intensive) and physical activity (less intensive) as a way to differentiate the two terms. Interestingly, the findings highlight that whilst the use of exercise is embedded into clinical practice, physical activity, while considered, was less routine in application. This tendency to focus predominantly on exercise that led to fitness might be limiting the scope of physiotherapists in clinical practice and risks excluding other types of activities used by people with MS, that might be meaningful and necessary for sustaining physical activity in the longer term. The professionals’ perspective provided some insight into the attitudes of physiotherapists. It highlighted the gap that exists between professional expertise and experiential expertise. Whilst physiotherapists considered their views and opinions within the context of activities done to and for the body, people with MS did not limit their responses to expressions about activities to the body but reflected a broader and more holistic view of exercise and physical activity. People with MS expounded the concept of exercise and physical activity within the context of their lives10. This supports previous findings where health professionals by nature seek to prioritise health whereas the complexity of the lived experiences of the patient might prioritise other areas of life, such as family roles11. Therefore, understanding both perspectives might facilitate greater collaboration between physiotherapists and people with MS. The study highlights the need for greater clarity about key benefits of physical activity for people with MS. Physiotherapists were found to be confident with the effects of exercise and fitness but less confident about the impact of physical activity. This could be a reflection of the evidence base as the majority of studies in people with MS are reflective of those mildly or moderately affected with the condition. Also, it calls for written

physical activity clinical guidance for people with MS which can provide a frame of reference for physiotherapists working in the community. In summary, physiotherapists value exercise and physical activity as a method to manage the symptoms associated with MS. Physiotherapists are strategically placed in the community to initiate discussions, assess, and create opportunities to enhance the physical activity practices of people with MS. This study demonstrates that for this to happen, greater clarity of the message around the benefits of physical activity to people with MS is required and the importance of priority goal setting, as these might be key drivers for engaging and motivating people with MS in physical activity. For more information about this study please find link below: h t t p s : / / d o i . o r g / 10 . 1080 /09638288 . 2019 . 1585969

Table: Showing the top 10 exercise and physical activity priorities and the reasons people with MS engage in exercise and physical activity. The prioritised exercise and physical activity practices of people with MS

The prioritised reasons why people with MS engage in exercise and physical activity

1 Self-care activities (e.g. shaving, shower, washing and dressing, cleaning teeth)

To improve MS symptoms (e.g. to improve or maintain strength, reduce pain and reduce spasms)

2 Everyday life activities (e.g. transferring, standing, pushing wheelchair or walking, climbing stairs)

Out of necessity (e.g. part of daily activities, activities that must be done)

3 Domestic activities (e.g. cooking, shopping, housework, laundry) To keep active (e.g. to keep mind and body active, to maintain function and keep transferring)

4 Transportation (e.g. using public (bus/taxi) or personal transportation)

For mobility (e.g. to keep walking)

5 Leisure activities (e.g. gardening, dancing, sport, visiting friends) Living with MS now and in the future (e.g. fear of deterioration, to combat MS)

6 Activities due to family roles (e.g. spending time with family, looking after children/grandchildren)

For self-reliance (e.g. to maintain ones’ independence and choice)

7 Stretches (e.g. activities done to stretch the upper and lower limbs) Emotional wellbeing (e.g. pleasure, improve mood, reduce stress)

8 Physiotherapy (e.g. activities done with or by a physiotherapist) For self-esteem (e.g. to manage weight, sense of achievement, self-worth)

9 Activities without weights (e.g. upper and lower limb exercises, abdomi-nal, bed and chair exercises)

Flexibility (e.g. to maintain or improve flexibility)

10 Activities with technology (e.g. computer, move it for MS DVD, phone,Wii)

For social reasons (e.g. social, feel connected, be part of community)

Key messages for clinical practice: • Health professionals should be aware of and understand the individuals’ priorities as these are key drivers to sustain physical activity in community dwelling people with MS. • Physiotherapists should design flexible physical activity programmes which are meaningful, engaging and foster the necessary environment to sustain physical activity participation in people with multiple sclerosis. For more information about this study please find link below: https://doi.org/10.1080/09638288.2019.1585969


NEuRoNColoGy

Description of physical Therapy, available at: http://www.wcpt.org/ policy/ps-descriptionPT. 2014 (accessed April 2015).

8. Dean e. Physical therapy in the 21st century (Part I): toward practice informed by epidemiology and the crisis of lifestyle conditions. Physiother Theory Pract. 2009; 25(5-6):330-53.

9. caspersen cJ, Powell Ke, christenson G. Physical activity, exercise and physical fitness: definitions and distinctions for health-related research. Public health Rep. 1985; 100(2): 126-131.

10. stennett A, De souza L, norris M. Physical activity and exercise priorities in community dwelling people with multiple sclerosis: A Delphi study. Disabil Rehabil. 2017; https://doi.org/10.1080/09638288.2017.1309464

11. smith cM, Hale LA, Olson K et al. Healthcare provider beliefs about exercise and fatigue in people with multiple sclerosis. J Rehabil Res Dev. 2013; 50(5): 733-743.

Acknowledgement: This research was funded by the Clinical Sciences Department, Brunel University London as part of the PhD Scholarship award scheme.

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1. Rietberg MB, Brooks D, Uitdehaag BM, et al. exercise therapy for multiple sclerosis. cochrane Database syst Rev. 2004;3:1-27.

2. ensari I, Motl RW, Pilutti LA. exercise training improves depressive symptoms in people with multiple sclerosis: Results of a meta-analysis. J Psychosom Res. 2014; 76(6): 465-471.

3. Klaren Re, Motl RW, Dlugonski D, et al. Objectively quantified physical activity in persons with multiple sclerosis. Arch Phys Med Rehabil. 2013;94:2342–2348.

4. Motl RW, McAuley e, snook eM. Physical activity and multiple sclerosis: A meta-analysis. Mult scler J. 2005; 11(4): 459-463.

5. somerset M, campbell R, sharp DJ, et al. What do people with Ms want and expect from health-care services? Health expect. 2001; 4(1): 29-37.

6. chartered society of Physiotherapy (2011) Physiotherapy works: multiple sclerosis (Ms) available at: http://www.csp.org.uk/ publications/physiotherapy-works-multiple-sclerosis-ms 2011 (accessed June 2013).

7. World confederation for Physical Therapy (WcPT). Policy statement:

The brain tumour patient experience of ketogenic diet therapy

Susan Wood*, Catherine Zabilowicz

Affiliation: Matthew’s Friends Clinics, Lingfield*Corresponding author: Susan Wood, Specialist Ketogenic Dietitian, Matthew’s Friends ClinicsMatthew’s Friends @ Young EpilepsySt Piers Lane, Lingfield, Surrey. RH7 6PWTel: +44(0)1332 864812. Mob: +44(0)7813 159737


ABSTRACT:

BackgroundKetogenic diet therapy (KDT) is creating immense interest across the brain tumour community, but it is currently unsupported and poorly understood in standard neuro-oncology care due to a lack of clinical trial evidence endorsing safety, acceptability and therapeutic value. We reporttheexperiencesoftwenty-fiveadultbraintumourpatientsonKDT for 4-51 months, with access to the services of a dietetic team specialising in KDT for epilepsy management.

MethodsA survey was conducted to gather information on reasons for pursu-ing KDT, the practical issues encountered and perceptions of the impact of KDT on tumour related symptoms, gastrointestinal function, weight management and psychosocial aspects of daily life.

ResultsTwenty-fivepatients(71%),aged30-71years(median46years),onKDT for 4-51months (median 11 months) completed and returned thesurvey.Nineteen(76%)hadsustainedKDTthroughepisodesofsurgery, chemotherapy, radiotherapy or combinations of these. All eight patients(100%)experiencingregularseizuresandelevenoffourteen(79%)withfatiguereportedimprovementsinthesesymptoms.Twentypatients(80%)reportedweight-loss,particularlyintheearlyweeks;forthirteen(65%),thiswasapositiveside-effect.Themostcommonadverseeffectwasconstipation,reportedbytenpatients(40%).Inboth symptomatic and asymptomatic brain tumour patients, support for their choice to pursue KDT was readily reported to underpin their sense of empowerment and control.

ConclusionsNotwithstandingthattheprimaryreasonsforover50%ofthepatientsto commence KDT was to prolong survival, this study is unable to makeanyobservationsinthisarea.However,thepatientexperiencewouldappeartoshowthatrefractoryseizuresandchronicfatiguemay be alleviated by KDT. Furthermore, amongst the group, the survey showsKDTtobesustainableandtolerable.ItwouldappearthatKDTisworthyoffurtherclinicalexplorationforitssymptommanagementbenefitsalone.

Key words: Brain tumours, ketogenic diet, seizures, fatigue, quality of life.

INTRODUCTION:Primary tumours of the brain and central nervous system (CNS) are a group of rare, heterogenous diseases, with widely varying outcomes. However, they are the leading cause of cancer death in the under-40s, and account for the highest average years of life lost, of any tumour type1,2.Many patients with brain tumours also have significant symptoms impairing their quality of life, including, physical problems (weakness, poor co-ordination), functional problems, seizures, fatigue, depression and cognitive impairment3. These may be

due to the disease, its progression, treatment side effects, or a combination of these. In addition, uncertainty around prognosis contributes to patients’ anxieties and concerns4, 5. For many patients and their families, the need to actively contribute to the management of their brain tumour with its associated physical and emotional symptoms is a powerful motivator and 32-41% of glioma patients are reported to explore complementary therapies and consider lifestyle change to manage symptoms and prolong survival6. The low carbohydrate, high fat, adequate protein ketogenic


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METHOD:The survey questions were based on recurrent themes raised by the patients; why they chose KDT, what support they had received, how they had coped with the practicalities of the KDT changes and how it had affected their family and social life. Further questions relating to the physical or functional benefits or disadvantages they experienced, were based on the categories of function highlighted in the brain tumour module of the quality of life questionnaires published by The European Organization for Research and Treatment of Cancer (18). The survey was sent to thirty-five patients (September 2014; n=10, November 2015; n=13, March 2018; n=12) who had completed at least three months of KDT. The stages of their supported KDT are described in Table 1.

RESULTS:DemographicsTwenty-five surveys (70%) were completed by twelve males and thirteen females, aged 30-71 years (median 46 years). Brain tumour diagnoses fell into five subtypes; Glioblastoma Multiforme (n=11), Astrocytoma Grade 2 (n=3), Grade 3 (n=4), Oligodendroglioma Grade 2 (n=4), Grade 3 (n=2) and Medulloblastoma Grade 2&4 (n=1). Due to the geographical spread of the patients, their medical care was delivered by seventeen neuro-oncology centres across England, Northern Ireland and Wales. Nineteen patients received active medical therapy (chemotherapy, radiation or surgery alone or in combination) while on KDT.The primary reasons for commencing KDT were reported as; to prolong survival (n=14, 56%), to improve seizure management (n=5, 20%), to help manage tumour progression (n=4, 16%), and delay tumour progression (n=2, 8%). Respondents had been on supported KDT for 4-51 months (median 11 months). Thirteen (52%) initiated dietary changes before contacting the support service for help and of these, nine (69%) reported that their ketogenic diet was not easy to follow at the start. Similar difficulties were reported by seven (58%) of those commencing with specialist support.The reported effect of KDT on tumour related symptoms and aspects of daily life are summarised in Table 2. what was the effect of kDT on brain tumour related physical symptoms? All eight patients who experienced regular seizure symptoms noted improvement on KDT, reporting reduced intensity, reduced frequency or a more rapid recovery from seizures. Eleven (79%) of the fourteen patients reporting fatigue prior to KDT, noted improvements in their fatigue. Around half of those experiencing headaches (n=11), disturbed vision (n=8) and concerns regarding their speech (n= 6) or co-ordination (n=8), reported improvements in these symptoms on KDT. what was the effect of kDT on brain tumour associated psychosocial concerns? In those reporting difficulties with mood (n=16), concentration (n=9), depression (n=4), memory (n=12) and anxiety (n=10), prior to initiating KDT, at least half reported some improvement in these symptoms. Of the seven patients expressing concerns about their relationship with family members, five (83%) felt that this improved while two (17%) felt it worsened on KDT. Similarly, in the twelve patients who reported that social contact with friends and colleagues was a concern prior to commencing KDT, six (50%) reported no impact, four (33%) reported improvements, and two (17%) reported it worsened. How did kDT affect gastrointestinal function? Ten patients (40%) reported experiencing constipation during

diet (KD) is a dietary approach creating significant interest in the brain tumour community7,8. Used for almost a century as an effective therapy for medically refractory epilepsy, KDT is known to deliver its effect by triggering a cascade of adaptions in cellular metabolism; restricting glycolysis, increasing fatty acid oxidation, increasing ketone synthesis and leading to enhanced mitochondrial respiration9. It is this broad-spectrum effect leading to improved cellular fuelling that has led to increased interest in the potential of KDT to deliver neuroprotective and therapeutic benefits to a wider range of neurological conditions beyond epilepsy. Research conducted by Otto Warburg in the 1920’s led to his proposal that tumour cells typically display a shift in metabolism characterised by an increased reliance on glycolysis even in the presence of oxygen; a fundamental difference from the metabolic characteristics of healthy cells of the same origin10. Now widely recognised as a hallmark of cancer, the Warburg effect provides a rationale for the exploration of the KD as a strategy to selectively disadvantage brain tumour cells by altering the biochemical climate in which they reside11. Preclinical studies of KD in glioma models indicate that ketosis mediates its impact by reducing glucose and insulin levels, modulating oxidative stress, reducing inflammation, enhancing anti-tumour immunity, altering gene expression and sensitising tumours to chemo-radiation12. Published case reports and case series of GBM and Anaplastic Astrocytoma on KD indicate tolerability, safety and direct tumour effects in some13. However molecular studies and controlled trials are needed to understand whether adjuvant KD may improve progression free survival and if so, when and for how long this should be applied14. In the meantime, the potential of KDT to impact on brain tumour associated symptoms and enhance the quality of life of those living with both low and high grade tumours, has largely gone unnoticed. Decades of use of KDT in cases of medically refractory epilepsy and the clinical knowledge accompanying this suggests that the positive effects on seizure management, fatigue, mental clarity and weight control may translate to brain tumour cases of all grades struggling to cope with similar life impairing symptoms15. Clinical data relating to the use of the Modified Atkins Diet in eight brain tumour patients, including four with low grade glioma, with resultant seizure disorders reported a 50% seizure reduction in five of the cases16.In the UK, NHS based KDT services for adults with epilepsy remain limited, with no provision for adults with brain tumours. Between 2011 and 2018, Matthew’s Friends KDT Clinic, supported by Astro Brain Tumour Fund, provided charitably funded dietetic support to over 100 self-selected adults from across the UK and Ireland, who requested information and guidance to explore KDT as a component of their brain tumour management alongside standard oncology care. A modified ketogenic diet (MKD)17; low in carbohydrate (measured), high in fat (portion guided) and moderate in protein, was used as a practical, adjustable KDT approach and individualised on a per-patient basis, with the aim of: 1. improving brain tumour related symptoms (e.g. seizures and fatigue) and overall sense of wellbeing. 2. establishing ketosis (ideally >1mmol/l) and stable glucose levels (ideally <5mmol/l) as determined by home blood monitoring. 3. supporting the individual to safely explore their choice of KDT, building confidence and self-control throughout. The survey was conducted to evaluate the experience of KDT in these patients.

KDT. In two of these, it was reported to be ‘mild’ and in one, coinciding with chemotherapy only. One patient had constipation prior to starting their diet which persisted throughout and one other experienced both constipation and occasional diarrhoea on KDT. Thirteen patients (52%) reported no adverse effects of KDT on their gastrointestinal function while two (8%) reported a past-history of chronic gastro-oesphageal reflux that resolved completely on KDT. How did kDT affect body weight?Twenty patients (80%) reported losing weight on KDT, mainly in the early weeks while three (12%) gained weight and two (8%) reported no change. Most patients felt positive about the weight loss (n=13, 65%) while some felt negative (n=3, 15%) and others felt indifferent (n=4, 20%). Similarly, in those that gained weight, most felt positive about reaching their preferred level (n=2, 66%). How useful was it to be able to monitor blood glucose and / or blood ketone levels? Although twenty-one (84%) of patients found home monitoring of blood glucose and blood ketone levels useful, the majority reported feeling anxious if levels were not as hoped (n=13, 52%), particularly in the early days of KDT. One patient reported finding blood monitoring unhelpful, citing its lack of correlation with seizure control as the reason. One chose to monitor infrequently, and two others chose not to monitor their blood ketone or glucose levels.

DISCUSSION:All patients with primary brain tumours face an uncertain prognosis and many experience neurological symptoms, refractory to medical management too. In this context, the desire of some patients to explore novel therapies in addition to

standard oncological treatment is understandable. Over recent years, KD has gained popularity within this self-determined group as more published pre-clinical data and academic reviews of the potential of KD to influence tumour metabolism have emerged11,

12, 19-23. However, to our knowledge, this is the first survey to examine the views and experiences of patients choosing KDT as an adjuvant option.The cases reported in the KDT experience group were self-selected, highly motivated to take a proactive role in their disease management and actively sought guidance. The majority found the KDT difficult to implement in the early stages, yet at the time of the survey, had managed to continue it for 4-51 months, often supported by equally motivated partners and families, working together to develop their knowledge, confidence and problem-solving skills over time. Patients reported most challenge with their KDT during times of active therapy and hospital admission where control over food choice was very difficult and they became dependent on family and friends bringing in all or part of their meals to enable continuation of their KDT. Matthew’s Friends Clinics is experienced in the use of KDT in the management of drug resistant epilepsy in adults, and familiar with patients reporting a positive impact on the quality and frequency of their seizures and reductions in fatigue when on KDT. However, the potential for KDT to deliver symptomatic benefits appears higher in this brain tumour group, with 100% of those with frequent seizures, 79% of those experiencing fatigue and at least 50% of those with headaches, vision, speech or co-ordination problems prior to KDT reporting improvements. Surprisingly, KDT was also reported to improve a range of psychosocial aspects of life, such as improving mood, concentration, memory, anxiety and the relationship to the family in patients citing these as a prior issue. The range of benefits and the frequency at


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KDT information booklet All adult brain tumour enquirers were sent an introductory booklet via email and invited to get back in touch to arrange a preliminary discussion by telephone if they wished further information/ support beyond.

Pre-KDT discussions (telephone) • Braintumourhistoryandtreatment.Anyothermedicalconditionsandtreatment.Contra-indications/cautions.• Practicalissues(dietarychanges,home-monitoringrequirements,importanceoffamily/friendsupport),commonlyreportedsideeffects(lethargyduring initialweekoftransition,constipation,weightloss)andcommonlyreportedbenefits(reducedfatigue,improvedseizurecontrol,weightloss).• Medicalformsandfooddiarycompletion.

KDT education session (face to face) • MKDprescriptionequatingtoanenergydistributionofapproximately5%carbohydrate,80%fatsand15%proteinbasedonpatient’sfooddiary,BodyMass Index,activitylevels,estimatedenergyrequirementsandwhetherweightmaintenanceorlosswasdesired.• FoodsourcesofproteinCHOandfat.Howtocountcarbohydrateandconsumeadequatefatsusing1gCarbohydrateand10gFatChoiceListsasaguide. Practical menu guidance based on food preferences and lifestyle. • Guidanceonhomemonitoring:weeklyweight,dailybloodketone(1.0-5.0mmol/l)andbloodglucosetestingorurineketonetesting,symptommonitoring.• Guidanceonvitaminandmineralsupplementation;formost,aone-a-dayadultmultivitaminandmineral,plusadditionalcalcium,magnesiumandvitaminD.

In the initial weeks of familiarising themselves with portion control, they were encouraged to weigh their carbohydrate choices on gram scales, while fats were more loosely portionguidedtomatchenergyrequirementsandpreventexcessiveweightloss.Proteinfoodswerenotrestrictedattheoutsetbuttheneedforonlymoderateportionswasemphasised. Menu guidance and planning sheets encouraged a simple, systematic approach to building ketogenic meals and a starter recipe book was provided. They were encouraged to keep meals and snacks to simple combinations initially, establishing their own personal repertoire of favoured recipes over time.

Follow up (telephone)• Weeklycontactbyphonefor6-12weekstodiscussadjustmentsofMKDprescriptionasrequired,basedonweight,bloodorurineketones,symptomchange andhowtheywerecopingwiththeirdietarychange.ThroughouttheKDTperiod,promptresponsetoqueriesbyemailandongoingphonecontactwasavailable as required. • Generally,bythreemonthspatientswerebecomingfamiliarwiththeirnewwayofeating,feelingsomebenefitsandgainingconfidenceandasenseof controlfromtheirefforts.However,ifbythreemonthsonKDT,patientswerenotexperiencinganybenefitsorfindingthe‘cons’outweighedthe‘pros’,they were encouraged to return to a mainstream low glycaemic load regime.

Table 1: Stages of KDT support for adults with brain tumours.


which these are reported is notable considering the prevalence of these symptoms in the brain tumour population, the negative impact these have on daily life and how resistant they can be to existing medical management strategies. Where KDT delivers tangible improvements to life quality, it also provides positive endorsement and encouragement to the patients and their families to maintain this approach. However, in both symptomatic and asymptomatic brain tumour patients, KDT was reported to deliver a sense of wellbeing, empowerment and control in a life situation where these had been lost.A low carbohydrate, high fat ketogenic diet can often lead to weight loss if the reduction in carbohydrate intake is not accompanied by an energetically equivalent increase in fat intake. This can be a challenging shift of emphasis for many brain tumour patients, accustomed to the prevailing ‘healthy diet’ guidelines that emphasise the benefits of carbohydrate and caution on the consumption of fats24. In this survey group, 80% reported some weight loss, with the majority viewing this as a positive or neutral change. All had received guidance on the relevance of tracking weight, symptom change and side effects so that adverse effects could be noted promptly and adjusted by appropriate dietary modifications. Gastrointestinal side effects are often associated with ketogenic

diets25 but 52% of this survey group reported no change in gastrointestinal function and 40% reported constipation that was managed by diet manipulation, laxatives or a combination of these. Two cases resolved their chronic oesophageal reflux on KDT and this in turn added to the overall positive impact of this diet choice on their quality of life. All patients were provided with a meter to enable blood glucose and blood ketone tracking and were supported to interpret their results within the wider context of their symptoms, medical treatments and overall wellbeing26. However, blood ketone levels are highly labile, being influenced by a range of variables beyond the confines of optimally adjusted KDT and self-control over food choice, such as exercise levels, stress levels, minor or major illness and use of steroid medications. In practice, the majority reported levels of 1-3mmol/l ß-hydroxybutyrate at some point through their monitoring process, and stable glucose in the 4-5mmol range. However, when blood levels were not as hoped, this readily led to anxiety, particularly in the early weeks of initiation. The optimum length of time to sustain KDT is unknown and many accept that it may need to be continued indefinitely. However, we have noted that long term adherence to a KDT may be more challenging for patients caring for young children,

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No. of reports of a positive effect

No. of reports of neither a positive

nor negative effect

No. of reports of a negative effect

No. of reports of newly emerging

symptom on KDT

Total no. of reports

Reports noting improve-

ment (%)

Tumour related symptoms

Seizures 8 0 0 0 8 100%

Fatigue 11 2 1 0 14 79%

Headaches 6 3 1 1 11 54%

Problems with vision 4 4 0 0 8 50%

Problems with speech 4 2 0 0 6 66%

Problemswithco-ordination4 3 0 1 8 50%

Psychosocial concerns

Concentration 6 3 0 0 9 67%

Memory 6 6 0 0 12 50%

Mood & Irritability 11 1 3 1 16 67%

Depression 2 1 0 1 4 50%

Anxiety 5 4 1 0 10 50%

Relationship with their family5 0 1 1 7 71%

Social contact with friends 4 6 1 1 12 33%

Gastrointestinal function

Constipation 0 1 0 9 10 0%

Gastro-oesophagealreflux 2 0 0 0 2 100%

Diarrhoea 0 0 0 1 1 0%

Body weight changes

Weight loss 13 4 3 20 20 65%

Weight gain 2 0 1 3 3 67%

Table 2: Patient reported effects of KDT on their brain tumour related symptoms, weight and gastrointestinal function.


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with two evolving their KDT into less rigorously controlled low glycaemic load regimes, to enable more family unity at mealtimes. In order that patients and their clinical support teams can make appropriately informed decisions about continuing, stopping or fine-tuning KDT, improved methods of tracking the tumour related impacts are urgently required. Emerging scientific and technological developments in the field of metabolomics may enable this in the future27.Time between brain tumour diagnosis and KDT initiation, age, use of additional supplements (e.g. specific foods, nutrients, spices, herbs including cannabis products), additional prescription medicines (e.g. metformin, statins, antibiotics, anthelmintics) and therapies (e.g. hyperbaric oxygen therapy) and levels of exercise varied greatly between these individuals and may have contributed synergistic and antagonistic effects, therefore caution is required when generalising about findings. All cases expressed their gratitude for the charitably funded KDT

training and the provision of ongoing support to enable prompt discussion of queries, monitoring data and diet adjustments as required. It is possible that easy access to expert support for both the patients and their families, enabled many to continue with KDT well beyond the point they may have reached alone.

CONCLUSIONNotwithstanding that the primary reasons for over 50% of the patients to commence KDT was to prolong survival, this study is unable to make any observations in this area. However, the patient experience would appear to show that refractory seizures and chronic fatigue may be alleviated by KDT. Furthermore, amongst the group, the survey shows KDT to be sustainable and tolerable. It would appear that KDT is worthy of further clinical exploration for its symptom management benefits alone.

RefeRences

see online: https://bit.ly/2QdXoQ6

The Macmillan Brain Cancer Rehabilitation Team (Brain CARE) is a pilot service bringing together Macmillan Cancer Support and Hertfordshire Community NHS Trust to improve the lives of people living with high grade and aggressive brain tumours. The team includes two Allied Health Professionals (AHPs) with a specialist interest in neuro-oncology and rehabilitation plus a project support worker. Since September 2018 the team has supported patients after a diagnosis of a high grade brain tumour through to end of life care - a seamless patient pathway.A high grade brain tumour diagnosis is devastating to patients and their families with low five year survival rates. The neurological impairments impact on participation, activity and well-being. Carer burden is also extremely high. The Macmillan Brain CARE Team is building on a two year Macmillan scoping project. This mapped the pathway for people living with brain tumours and highlighted: a complex pathway spanning organisational and geographical boundaries; poor access to rehabilitation with patients falling through systemic gaps; inconsistent communication between treating teams and limited awareness around rehabilitation benefits for these patients.This pilot hopes to redress the access inequalities to services for people with brain tumours. The specialist AHPs are working in

Improving quality of life for people living with high grade brain tumours

Speech and language therapist who has worked extensively with adults living with acquired and progressive neurological conditions. Her current role is Macmillan Clinical Specialist Allied Health Professional in Neuro Oncology in the Macmillan Brain CARE Team. This position is hosted by Hertfordshire Community NHS Trust and supports people in Hertfordshire who are living with high grade and aggressive brain tumours.

E: [email protected] Kelly

navigation roles ensuring the rehab and support needs of patients and their families are met. A neurological therapy assessment is offered to the patient after diagnosis or when therapy needs are identified; this assessment is repeated as often as required during their care.A key aim is improving quality of life for people living with high grade brain tumours. In the past 11 months the team has supported 94 people in Hertfordshire living with a high grade brain tumour with neurological assessments and regular reviews to meet their rehabilitation needs. These patients have been supported further by multiple referrals (223) into services across Hertfordshire, including: physiotherapy, occupational therapy, speech and language therapy, dietetics, counselling, specialist palliative care and hospice teams, sensory services, specialist dental teams, bladder and bowel care. In addition patients were able to link to benefit support services, social care services and third sector organisations.Outcome measures are used to look at quality of life. Where possible the Functional Assessment of Cancer Therapy – Brain questionnaire is completed. Repeat measures have shown that 74% of patients who were able to complete the questionnaire showed improvement in one or more subscale. These results

are promising in highlighting the benefit of timely and specialist rehabilitation to the person living with brain cancer. The importance of supporting family and friends who find themselves in a caring role following the diagnosis is paramount to the team. Signposting to carer support networks and referrals to respite services enable family and friends to feel supported in their caring role.An additional remit is the training and development of the local work force and the sharing of information relating to the patient’s

The data collected during our first year of service highlights our contribution to

efficient and patient-centred care.


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condition with local teams. Neuro-oncology training sessions have been rolled out, ensuring a confident and skilled workforce. To address the information sharing needs the team are currently developing a tool which brings the clinical information from the tertiary centres back to the local therapy teams. This tool will share diagnostic and prognostic information; surgical and medical treatment information and information on the functional ability of the patient, enabling informed treatment decisions to be made with the patient.

The patient’s experience with the teamWe aim to make contact with the patient as early as we can after they receive the diagnosis of a high grade brain tumour. This may just be to introduce ourselves and our service and provide reassurance that support is there when they need it, or it may be to arrange an assessment session if there is an immediate rehabilitation or support need. The value of knowing someone is there to help cannot be underestimated when coming to terms with the knowledge of an incurable cancer.When we meet with a patient for the first time we spend as long as is required to get to know the patient and understand their needs as well as those of the family or friends in their support network. Our assessment involves a thorough case history and any relevant neurological screening tools that will provide a baseline of their functional ability (for example the Montreal Cognitive Assessment – MOCA, the Frenchay Aphasia Screening Test – FAST, five times sit to stand). In our roles as a key worker or service navigator we are then able to refer them to the service that best meets their rehabilitation needs. This helps to ensure rehabilitation is at the right time and in the right place to meet the person’s needs.We are frequently told by patients and their families that this assessment, referral and information sharing is vitally important as they don’t always know what is available or what help they

can access. By providing this information we reduce burden whilst promoting self-management through increased awareness. Provision of information also enables patients to be informed of their options and to make choices and decisions while cognition remains intact. The baseline we establish from our initial contact is essential as we can benchmark any changes in function and inform further treatment decisions. We remain involved with the patient throughout their journey and as often as they need us; reassessing at key points and facilitating other streams of support as they become necessary such as specialist palliative care. Reviews can take the form of a phone call, a face to face review appointment or a carer contact. It is this person centred care and knowing there is someone who can help when needed that enables a seamless journey for the person living with brain cancer. “The team are very easy to contact and very willing to help, support and advocate for me. Previously I struggled to get support and to find out what was available”As a new service we are taking time to learn from our patients. We actively seek their feedback and input into how the service should develop. Every time we meet a new person who is dealing with the diagnosis of an aggressive brain tumour we are faced with a different concern or a different need. This motivates us to continue to explore support avenues that we may not have previously used. For people in Hertfordshire a diagnosis of an aggressive brain tumour no longer means struggling on your own. The data collected during our first year of service highlights our contribution to efficient and patient-centred care. Patient feedback has highlighted the benefit of a coordinator working across organisational boundaries to facilitate integrated care. The pilot service will continue until June 2021. For more information about the Macmillan Brain CARE Team please contact Alison Kelly–[email protected]

Cancer and the ketogenic diet: a current perspective

Cancer is a complex disease. As our understanding of the genetic makeup of cancer cells improves treatment can be refined to provide targeted therapies optimising the chances of eradicating or at least controlling tumour growth. Exciting new developments such as immunotherapy offer a new way of using the immune system to attack tumour cells. In the 1920s Warburg identified that cancer cells exhibit a preference for using glucose as an energy source and had an atypical method of processing glucose compared to ‘normal, healthy’ cells. However, Warburg went on to claim the changes in the cell mitochondria drive the conversion of the cell into a cancerous cell. This hypothesis has several problems – numerous non-tumour cells exhibit the Warburg effect (for example embryonic cells) and there are a great number of tumour cells (60-90% depending upon cancer type) that do not exhibit the Warburg effect. In a single tumour the cells will be heterogenous and will not all exhibit the same

level of Warburg effect or inability to metabolise ketone bodies and free fatty acids (Schroeder et al 2013). In addition the genetic make-up of cancer cells can also change with time. There is little clinical evidence to support the use of the ketogenic diet in the control or eradication of tumour cells (Stemanakova et al 2018, Weber et al 2019). Most research is hampered by methodological limitations (case reports, small sample sizes, limited follow up) or has focused on outcomes such as the feasibility of following a ketogenic diet (for example Martin-McGill et al 2018, a Nebeling et al 1995, Reiger et al 2014, Zuccoli et al 2010) . The interventions in different studies vary both in the level of ketogenesis desired, the length of time spent following the diet, level of ketosis achieved and the use of concomitant conventional treatments. (for example Reiger et al 2014, Schmidt et al 2011, Tan-Shalaby et al 2016) Tumour types studied and those with tumours which vary in their genetic make-up and behaviour are often combined making drawing conclusions difficult. (for example Fine et al 2012, Schmidt et al 2011, Zahra et al 2017 This makes recommending the ketogenic diet in clinical practice difficult to justify at present (Martin-McGillb et al 2018b, Oliveira et al 2017). Sremanakova et al 2018, Weber et al 2019).

Louise HenryMSc RD Senior Specialist Dietitian and Clare Shaw PhD RD, Consultant Dietitian


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Many patients are keen to explore self-help measures when faced with a cancer diagnosis. The opportunity to take control over their health, contributes to a perceived benefit and feel that they are ‘doing something’ which can be helpful for some patients. The concept of ‘battling’ a cancer is seen commonly in the media. However, there are dangers in this approach. Many report feeling that they had not tried hard enough if they ‘fail’ or

‘lose their battle’, they experience a sense of loss, disappointment and despair if they are unable to continue with a self-help strategy such as a diet. There may be a feeling of guilt for not embarking on a dietary intervention and for letting family and friends down. As health care professionals it is also important not to raise false hope and expectations, particularly when patients are hoping for disease control or eradication. We must ensure patients are not pressurised or coerced into following complex and restricting dietary interventions that are not supported by robust, high quality clinical evidence. This is especially important when safeguarding those with the quietest voice i.e. patients with cognitive changes and the sizeable paediatric brain tumour population. Some question if there is any harm in following a ketogenic diet in the absence of clinical evidence. Pursuing a non-evidenced based dietary intervention may cause unintended consequences for health. By the same token that there isn’t clinical evidence highlighting the efficacy of the ketogenic diet in tumour management there is also no research unequivocally demonstrating that following a ketogenic diet is harmless or risk free. Could reducing those cells that can only metabolise glucose mean that those tumour cells adapted to utilising ketone bodies and fatty acids thrive and therefore change the nature of the tumour composition which may or may not be more difficult to control? Pre-clinical research has suggested in some tumour lines (certain types of myeloma, kidney and breast cancers) a ketogenic diet may promote tumour growth and survival. (Lisanti et al 2010, Liskiewicz et al 2016, Xia et al 2017). Recent laboratory-based research published by the Institute of Cancer Research (ICR) showed that there is a potential that a cellular environment high in ketone bodies may promote metastatic spread of breast cancer cells (Weverwijk et al 2019). In clinical practice, there may be disadvantages to following a very low carbohydrate diet including weight loss and gastrointestinal symptoms. In some circumstances this may lead to patients declining treatment or recommended medication (including IV analgesia). A published study highlighted that following complementary therapies may be associated with worse outcome (Schroeder et al 2019). The health challenges related to following a ketogenic diet are well documented and not restricted to those who suffer from medication resistant epilepsy. Renal and liver dysfunction are recorded as well as gastrointestinal changes (Champ et al 2014). A high fat, relatively low fibre diet and diet restricted in fruit and some vegetable content is not in line with the advice from World Cancer Research Fund recommendations and the NHS guidance on healthy eating. It is important to remember that cancer may not be the only health challenge faced by those choosing to follow the ketogenic diet. The economic cost of following a ketogenic diet should not be ignored. This is a cost not only to the individual choosing to follow the diet (a cost both in terms of finance and time) but also to the

health service. An important factor in times of limited resources - should the NHS fund non-evidence based clinical interventions? What conclusions can we draw from a survey of well-motivated, compliant patients? It is gratifying to read that the patients who answered the survey responded positively to the aspect of self-help and control. What would be even more interesting would be to explore the experience of those who did not complete the survey - their reasons for non-completion, how they felt when they stopped following the diet or failed to start? Data gathered from a survey is interesting to read but is not sufficiently robust to warrant changing practice, particularly in the face of a lack of clinical evidence. So when will we have more robust evidence to support or discount the use of ketogenic diets? Unfortunately this is still a long way off. Research into the tolerability, safety, impact on weight loss, body composition and metabolism of cancer cells continues. Currently there are 16 clinical trials listed on Clinical Trials website on the use of ketogenic diets in a number of cancer diagnoses including prostate, breast, endometrial, colorectal and melanoma. Brain tumours, primarily glioblastomas, continue to be the most common diagnosis in which ketogenic diets are being studied. Many studies use ketogenic diets alongside conventional chemotherapy and radiotherapy in non-randomised studies and therefore will be unable to comment on the efficacy of the diet. Over the next few years there may be clearer evidence as to any possible detrimental effects of this restrictive diet, however, it will be longer before any effects on tumour growth are known.

RefeRences

see online: https://bit.ly/2U2ABaZ

Some question if there is any harm in following a ketogenic diet in the

absence of clinical evidence.

An online hub for sharing information and resources,

supporting families and individuals living through epilepsy.

www.eqol.org.uk

Day by day. Week by week. You become the expert in your tumour. The AHPs are there to help when you need advice to help you maintain the expertise:Your sight. You can see most things. The world looks good apart from that bit to the side, or the need for the patch because seeing two of these worlds is headache inducing. Fatigue. That treatment was exhausting. How will I manage tomorrow and forever like this?That leg, that arm, that clumsiness. I want to do so much. How do I manage? Are there exercises I can do? Are there systems that can be put in place so that I can do as much as I can, just by myself? Talking. Why can’t I remember that word? If they would just shut up so I can think of it. I could say something funny now but it won’t be quick enough to make the impact. I want to soothe them but the words aren’t there. What are they saying? My brain didn’t compute that instruction; should I guess at what I should do but risk looking daft? Memory. I know someone is coming today but who was it? I think I have read this page before but I cannot remember. Where was I in making a cuppa? Was I making a cuppa? Reading. It doesn’t make sense. I was so into my books. What will I do now that I cannot read? I cannot stand all the rubbish on the TV. Writing. I can read it but cannot write it. There must be a way.The list of changes that can happen is longer. Someone is there who can help. Ask.The AHPs don’t just sweep in and make it better. They aim to give you some control over what is happening. They aim to give you therapy, help, guidance, advice as appropriate. They listen. They get in tune with you and your personal needs. Experience of the condition in others they have worked with helps because things that have worked for others can be suggested. But you are in the centre. This is your life-changing diagnosis. This is your future and the AHPs are here to help you make everything of it you can.

So, the diagnosis is brain tumour. You won’t know what the name or grade of it is until after the surgery whether that be biopsy, debulking or resection. The diagnosis remains brain tumour and things are changing.First hit - the words ‘brain tumour’. And then come the questions. What do you mean I cannot drive, how can I live this life I lead without driving? What should I tell the family? How long have I got? What did I do to get it? What should I have done to prevent this happening? Shall I alter what I eat - will that change things? Is it inherited? I should not have lived so close to those pylons; this is my phone use isn’t it?Then comes the plethora of medical language and unpronounceable drugs to prevent this, manage that. They just roll off the tongues of the professionals. It is impossible to remember what they are, least of all what they actually do. Go with it!You feel fine so why are you going in for surgery? Feeling this good surely means there is nothing wrong and you can just leave here. But the surgeon says not. Your family say not. You know deep down inside not. So you go for it. The reassurance of knowing you are having movement or language monitored for the surgery helps. The professionalism of those around you helps but this path is rocky. You search for the old path, the smooth path, the busy-with-the-day-job path, enjoying-the-family path, planning-the-next-holiday path.Yay, you did it! You woke up from surgery. This drink is perfection; nectar from the Gods. What is for tea? And then the ‘what next’ question creeps up behind you or is thrown casually into the arena by that lovely visitor who brought the chocolates.The ‘next’ is going to be about getting home and facilitating living to enable coping and enable coping to facilitate living. If you define living as ‘the way in which you live your life’ and coping as ‘to face and deal with challenges successfully in a calm or adequate manner’ then this is what we do when we enter the ‘what next’ phase. Whether this is more oncology treatment, rehabilitation or just being home.You do not have to take this path alone. There are allied health professionals (AHPs) with a wide variety of skills, knowledge and approaches to facilitate you coping with living and living with coping. They will work with your goals so that you are the empowered one and you can do as much as is possible given the extent of the problem you are facing. Our best is what we can do within the constraints of the situation we are in at this moment in time. That is all anyone can expect of you. That is what we, as AHPs, are here to help you achieve to the extent you want.The AHPs officially include: physiotherapists, occupational therapists, speech and language therapists, clinical psychologists, dietitians and pharmacists and their support workers. They are integral to your support network along with neuro-oncology clinical nurse specialists and the various charitable organisations. Each help you to be how you want and need to be.These people are going to help you through the ‘next’ - however long.

It’s your future…and allied healthcare professionals are here to help you

make everything of it that you canHelen Spear Speech and Language Therapist, North Bristol NHS Trust and a member of the Community Therapists Network, United Kingdom. Helen works in the specialist area of neuro-oncology.


Reprinted with permission from the 2019/2020 edition of Brain Tumour magazine, a publication from the International Brain Tumour Alliance

(IBTA) – www.theibta.org


NEuRoNColoGy


NEuRoNColoGy

I was diagnosed with a grade 2 meningioma in 2006. This was after a couple of years of experiencing progressive and increasingly severe symptoms. Getting my GP to recognise what I was describing needed further investigation was a significant frustration. I had not been a frequent visitor to the GP, yet I must have organised ten appointments in short succession. This did not appear to raise alarm bells with the GP. While I appreciate that GPs are under time constraints, and increasing workloads, in my opinion, being offered the chance to attend a pain clinic without attempting to find out what might be causing the pain, is not good practice. Suggesting I might be depressed, also didn’t help! The first sign for me was a very painful neck which initially meant I could not watch TV from the sofa or comfortably view a play at the theatre. The failure of my GP to manage the situation appropriately lead me to seek out treatment from reflexology, osteopathy, acupuncture, etc, for the significant discomfort, but to no avail. The pain became unbearable and much worse at night, so we changed our mattress and pillows, and I was popping pain killers. I would wake in the night, eventually every night, because of the pain. It got so bad that even the touch of a sheet hurt. During the day, if I bent down (to open a drawer in the fridge, for example) I was in such pain I couldn’t get up and had to use the breathing techniques learnt for giving birth! Eventually I just had to pay for an appointment with a neurologist at which point I couldn’t walk in a straight line, felt ‘sea sick’ all the time, appeared drunk, could not sleep because of the headaches. He agreed that an MRI was a good idea to rule anything out, which I also self-funded! On the day of my appointment for my scan results I asked my father to accompany me as I felt I was not being taken seriously. The neurologist went quiet, and then offered me an apology when it was revealed that I had a large meningioma (turned out to be grade 2) in the posterior fossa. I had cerebral oedema to such an extent that I had to take steroids immediately to reduce the swelling before they could operate to debulk the tumour.My GP subsequently wrote a letter to me (not quite an apology) explaining that she had never been presented with the symptoms of a brain tumour which explained why she had failed in her diagnosis! I was admitted immediately to the National Hospital for Neurology and Neurosurgery where Mr Neil Kitchen operated to debulk the tumour. The whole tumour could not be removed as it would have caused permanent brain damage and had infiltrated too deeply. It was thought that I had had the tumour for ten years before it was diagnosed (they could tell by the size and shape). When I awoke from the operation I was in Intensive Care, completely paralysed down the left-hand side of my body. Consequently, this meant I was in hospital from the start of October until the end of December 2006.I was lucky to have in-hospital rehabilitation in a special unit at the National Hospital, and was given extensive physiotherapy, speech therapy and occupational therapy, as well as psychological support, to start to recover any movement and ability to walk, talk, swallow or move any part of my left hand side. I could not eat so had to be tube fed, I couldn’t swallow my own saliva and I had (and still have) no sensation of hot or cold, wet or dry on the left side of my body – a condition known as Wallenberg’s Syndrome and my left eye had a nystagmus which made it hard to see clearly or focus. My left eyelid also drooped.Complete lack of Community Rehabilitation/AftercareSince leaving hospital I have experienced a complete

lack of support and joined-up u p care. Despite the much appreciated care at the National Hospital, I had to request every 3, 6, annual and now bi-annual follow up scans and blood tests. They failed to put a regular recall system in place! Thankfully I managed to obtain my Consultant’s secretary’s email address and she and I remain in regular contact…. She sent me every blood test form when I requested them, I arranged for blood tests to be carried out by my GP after which I could book an MRI scan at the National. The year following my operation I had Gamma knife treatment on the remaining tumour (and subsequent scans have shown that the residual tumour has not grown). This was conducted by my National Hospital Consultant but at a private hospital (funded on the NHS). One of my vocal cords was paralysed so I had a medialisation operation (at an NHS hospital in Brighton) which allowed me to speak again. But sadly I then had two or three speech therapy sessions at a local hospital, that were unproductive.After that, no care package was put in place and I was on my own. I am very fortunate to be educated, articulate and capable of seeking out the necessary rehabilitation – so goodness knows what someone without the capacity or skills (or money) would do?In the twelve years since my original diagnosis and operation I have developed a plan of recovery. It has been very largely successful.I found a physiotherapist who specialised in neurological disorders and organised 6 months of private, one to one sessions with her. I soon realised that I would need to do more than this. So for 12 years I have done and still do a private Pilates session every week to build up my core strength and balance to such an extent that I can now function really well. I still have some balance issues, find it hard to walk downstairs or down hills without holding on, can’t walk over rough ground/cobbles, run or dance. I have periodic physio sessions when my left hand side lop-sidedness affects my back which has on two occasions gone into complete spasm. I also have a static exercise bike and cycle for 20 minutes a day.I have ptosis of my left eyelid after my paralysis, and I have had two privately funded non-surgical facial aesthetic treatments to address these; a Plexr (plasma technology) treatment and a non-surgical thread lift. Neither were particularly successful and any effects were short lived. In the subsequent years the effects of my medialisation began to wane and I was having to strain to speak, especially in loud places, on the phone or in meetings, and had to raise it to make myself heard. As a result, I would lose my voice. Late in 2018 I had a procedure at a private hospital to inject a special dermal filler into my atrophied vocal cord and this was followed by intensive (private, again!) speech therapy to relearn how to project. The latter has been very successful and I am now able to speak with greater ease and without sounding like I have permanent laryngitis. I run my own business, work full-time and am, I hope, an example of what can be achieved with a positive attitude and bloody mindedness to get a diagnosis and recover and then not be labelled a victim or a sufferer! It has taken time and energy to develop my own care package, navigate to find the right specialist services and fund it all myself. I have had to learn to accept a new me, but continue to work hard on my rehabilitation to this day.

life after a brain tumour

Positive Communications. E:[email protected]

Tracy Posner

NEuRoNColoGy


“Would you mind taking a seat, the doctors are examining your scans. They’d like to come and talk to you.” Well that was it! Because I was in shock, I was wrapped in a blanket and I’ve never had so much sugar in a cup of tea. I found myself in a room with three surgeons. “We’ve found a mass…. you have dangerous hydrocephalus… we need to admit you to hospital, so a bed is being arranged.” There was I thinking I’d just have the tests and go home and see my local neurologist for a follow up. Because of my neuroscience background and several years running the Primary care and Community Neurology Society (P-CNS), I thought I might have multiple sclerosis. But a brain tumour had crossed my mind. Phoning my wife to tell her “I’m not coming home” was rather tricky, to say the least. But before I got chance, she said: “Can I call you back? I’m just getting the children from school.” To describe my thoughts at that point, would need a few *****s! Friday, 13th March 2015 is forever etched in my memory. The day of my operation. The operation went well; the hydrocephalus was no longer and although the surgeon couldn’t remove the entire mass, he debulked it, removing sufficient for a biopsy. He also fitted something called a ‘Rickham reservoir’ – a dome-shaped device placed under the scalp with a plastic tube that goes into a ventricle in the brain; the purpose being to minimise any future intracranial pressure. Fast forward one week. I had recovered from the surgery, passing the occupational therapy and physiotherapy tests, and was back home. But a big question mark hung over my future until my phone rang. It was just as we were leaving the restaurant where we had celebrated our wedding anniversary. It was my surgeon. The news was encouraging. The mass was a slow growing grade 2 pineocytoma. I needn’t return for further surgery and would have an MRI scan in three months. What a relief!Learning point one As I live through my brain tumour experience, my first learning point concerns the importance of preparing people for when they leave the security of the high level of care received from a specialist hospital. No matter what type of brain tumour, and in fact, whatever the diagnosis, the sense of isolation once you are back home is not insignificant. I know I’m not alone in such a feeling. Therefore, I would suggest it would help if a staff member explained - either to a family member or patients themselves - that it’s not unusual to experience feelings of isolation after a stay in hospital, which may in part be due to patients becoming attuned to the relative safety of the hospital environment. Such an explanation may help people cope better once they are home. Plus, it offers an opportunity for patients to consider ways, prior to returning home, to help adapt. I’m sure ideas offered by the hospital staff would be welcomed!When I got home, the impairment of my immediate recall/ short term memory became more apparent. Luckily, with my neurosciences background I rationalised that, given the need for the surgeon to tease apart regions of my brain associated with memory, the neurons would reconnect with practice and time.

Executive Director, Primary care and Community Neurology Society

Reprinted with permission from the 2019/2020 edition of Brain Tumour magazine, a publication from the International Brain Tumour Alliance (IBTA) – www.theibta.org


The ‘Bindepeople’ on holiday on Dune du Pilat, France 2018. Left to right: Neil Bindemann, daughter Grace, wife Eleanor and son Arthur

Dr Neil Bindemann

living through and learning from a brain tumour experience

I still remember that hallelujah moment when I was rewarded for such thoughts. I had been out in the garden, and I went to make a cup of coffee. But where was my mug? I’d had it in the garden. I then recalled being in the shed, of all places. And yippee, there the mug was, on the shelf! I can’t tell you how much that lifted my spirits. I had spent months since the surgery fretting about losing my house keys and my wallet. Every time I left the house. I constantly checked my pockets, rather urgently. Virtually every time visiting a shop or café or on a train to return home I asked myself: “Have I got my wallet?” Then I would urgently check my pockets, doing the same for my house keys. But I still kept practicing my immediate recall, making mental notes of actions I had taken, hoping to get those neurons rapidly reconnected! So, you see, it was a very significant moment for me, remembering that I’d left an object in a rather obscure place like the garden shed. I believe my level of mental fitness, which I now give presentations about, contributed. Learning point two My second learning point is this. If it is known that neurosurgery will impair any aspect of a person’s memory (even just for a short time) and consequently interfere with everyday activities (thus impairing quality of life), they and their partner and/or family need the necessary preparation and support from the healthcare services. But perhaps my key learning point comes from the most eye opening experience, which in my opinion illustrates why we need primary and community care health services to be far more engaged in neuro-oncology care. It would require them to take such a simple step and it would make such a dramatic difference to so many patients’ and families’ lives, not to mention the potential cost savings from supporting and building a person’s mental fitness.A few days had gone by since returning home from hospital. I had started back to work. I held the belief (and still do), that my rehabilitation would accelerate by working. That stems, in part, from my father’s attitude of what I term “living through illness”, plus his exceptional psychological skills and desire to support people’s quality of life. I also had a need to work, as I am self-employed.


SERVICE DEVEloPMENT

Multiple sclerosis (MS) is a complex progressive and heterogenous neurological disease which can start at any age and affects every person who lives with it in a different way. The number of people living with MS (prevalence), and numbers of people developing MS (incidence) is increasing, including in children. Whilst the disease was initially identified in the 1830’s, the last two decades have seen the most significant advances in understanding of MS in its short history. This has

led to increasingly effective and numerous disease-modifying therapies (DMT’s), greater understanding of the role of MRI and biomarkers in disease monitoring, better understanding of brain health, lifestyle implications, symptomatic treatments and non-pharmacological treatment. These advances have transformed the lives and aspirations of millions of people with MS worldwide.Increased understanding of MS, coupled with higher therapeutic aspirations, has led to an exponential increase in complexity. MS teams consisting of consultants, specialist clinicians, neuropharmacists and other allied health professionals are expected to provide cutting edge knowledge and information, optimal services and support, joined up care, and innovative

solutions to local challenges within an NHS operating at maximum capacity and always changing. It is in response to this challenging environment that MS Academy was formed.

A tried and tested modelPart of Neurology Academy, whose vision is to deliver uniquely practical education to produce specialist clinical leaders and transform local healthcare, MS Academy’s variety of bespoke courses follows the hugely successful model established 16 years ago for Parkinson’s. Fully funded through pharmaceutical support, the Academy is also endorsed by national charities and UK-wide professional bodies. Originally intended as a one-off course, four clinical specialists collectively developed the ‘MasterClass’ as a new kind of educational model which would upskill health care professionals (HCPs) in their clinical knowledge whilst supporting them to enact practical changes to improve service quality and delivery: an educational model that delivered real benefits to people with Parkinson’s. The Parkinson’s MasterClass has supported 1,500 clinicians and spurred 75% of attendees to develop their own Parkinson’s services locally. Now, with eight MS MasterClasses run over three years, and leadership from educational director Professor Gavin Giovannoni, strategic director Dr David Paling and managing director Sarah Gillett, the MS community is beginning to benefit in the same way.Outputs and outcomesOffering three levels of MasterClass: Foundation, Intermediate and Advanced, the Academy also provides Neuropharmacy and specialist palliative care courses. Every course, composed of

More than specialists: how unique education creates clinical leaders and transforms services

“This is the best MS course - in fact the best amongst all the educational courses

- I have been on.”

A wealth of knowledge poured on us with patience and well-paced sessions.”

One morning, during those early weeks, a letter arrived. When I realised it was from the hospital my heart rate suddenly accelerated. I needn’t have worried. It was a copy of the discharge letter which the hospital had sent to my general practitioner (GP). I read it and didn’t think any more of it.But the discharge letter started to irk me as I continued to work through my memory deficit, the quality of life impact of my driver’s licence being revoked and the accompanying loss of independence - to say nothing of my rather uncertain future. Why had nobody from the healthcare professional team been in touch? The answer to that question, which left me rather aghast, will appear in due course in an article on www.neurodigest.co.uk.Learning point threeSo - getting to my third learning point. When a patient and their family have experienced a trauma like a brain tumour which has been clearly documented in the hospital discharge letter, please, please, please can the powers that be make sure that someone from the local general medical practice or even a developing community neurology service picks up the telephone and calls the patient and family. It doesn’t have to be the GP. It could simply

be the practice nurse or a caring receptionist, who calls to say something like: “Hello Mr/Mrs/Ms Xxxxxx. I see you’ve had a rather difficult time these past few weeks, so we just wanted to give you a call and make sure you’re okay. If you do need to talk then we’re here to help.”If companies can set up automated telephone systems to try and trap you into enquiring about insurance scams, surely it can’t be too difficult for health services to simply place a human being at the end of a telephone call!Thankfully my mental fitness approach continues to help me through my daily life post-brain tumour diagnosis. And I believe it has contributed - along with my decision in March 2018 to go on the ketogenic diet - to the wonderful news I received this March, which was that my brain tumour has remained stable.For further information about the work of the Primary care and Community Neurology Society (P-CNS) please see https://p-cns.org.uk/ or contact Dr Neil Bindemann at [email protected] extended version of this article can be read at www.neurodigest.co.uk.

SERVICE DEVEloPMENT


two residential modules of interactive teaching also includes a practical, inter-module project to address a local service need.Delegate feedback from the course itself is exceptional, but the Masterclass aspires higher, and uniquely aims to help delegates to make real changes to their services - and it is the inter-module projects that demonstrate this.Some of our delegates have used their projects to accomplish incredible local changes such as Dr Francisco Javier Carod Artal’s extensive analysis of epidemiology of MS in the Highlands which found that both prevalence and incidence of MS in the Highlands has increased in the last 50 years, highlighting the implications for resource allocation for MS in the future.With no gold standard for baseline screening and risk mitigation of infectious complications prior to initiating DMTs in MS, neuropharmacist Olivia Moswela used her project to audit pre-treatment screening and risk mitigation. Developing pre-treatment check lists, clinical guidelines and patient information leaflets for immunotherapy as a result of her findings created positive change in local practice.Others have used their intermodule projects as a platform to transform services at a national level. Dr Rachelle Shafei used her inter-module project to tackle a local challenge: preventing listeriosis in patients using the DMT alemtuzumab. She has since created a national set of patient-facing guidance (fig 1) and an online resource available to anyone who needs it.Neuropharmacist Rachel Dorsey-Campbell’s project to monitor the real costs of DMTs has escalated to a national campaign, including a free cost-calculating tool for clinicians to use locally. The project has so far provided incredible evidence (fig 2) as to the financial and staff-time resources actually required to effectively provide and safely monitor DMTs for MS patients, which are currently uncommissioned.Education-plusEducating and upskilling HCPs with an interest in MS to provide the very best care, and to transform their local services, is a fantastic basis for any model, yet MS Academy goes further still. Committed to producing tomorrow’s clinical leaders, the Academy has recently joined with leadership specialist Barbara Hoese and clinical leader Professor Gabriele de Luca to develop a

selective leadership programme to further equip MS specialists to lead for change in their locality.A final element of Neurology Academy’s vision is that of a collegiate network, a means of collaborating, sharing practice, providing support, and developing a means to national change through local innovation. MS Academy, alongside its courses, is leading a national programme to ‘raise the bar for MS’, with five workstreams (fig 3) committed to addressing key elements which can come together to truly change the experiences of service delivery and receipt for professionals and patients alike.In the three years since it started, the MS Academy has had significant impact, both on professionals who rate it as ‘the best amongst all the educational courses’, but also to people with MS in areas where services have been improved by projects created from the learning and peer support of the Academy. The Academy’s ultimate aim is one that benefits the whole MS community: to empower every consultant, nurse, clinician and allied health professional who goes through the Academy with the knowledge and skills they need to give every person with MS the best possible care, and to design and implement world class services.

Figure 2: Table outlining staff costs for a given Trust using the budget-modelling tool (Kindly reproduced from the poster ‘The burden of blood monitoring for disease-modifying therapies on MS services in the UK: a review of costs and processes’ by Sue Thomas, Wilmington Healthcare, Dorsey-Campbell R, Thomas S, Lawton A, Gillett S, Worpole A submitted to ‘Raising the Bar for MS’ : MS Academy conference, July 2019)

Figure 1: Patient-facing listeriosis-prevention resource kit for people with MS accessing alemtuzumab


SERVICE DEVEloPMENT

Figure 3: the key actions (2019-2020) for each of the 5 workstreams in ‘Raising the bar: tackling variation in MS services


SERVICE DEVEloPMENT

The NHS Long Term Plan commits to removing the need for up to a third of face-to-face outpatient appointments over the next five years. This is an opportunity

to redesign the way specialist neurology services are delivered. Nationally, waiting times for neurology first outpatient appointments are growing while activity is decreasing, suggesting a significant capacity problem. As well as transformation of outpatient services, the NHS Long Term Plan also presents opportunities for neurology services to: • thinkdifferentlyaboutworkforceandmaximisetheroleof specialist nurses • involve patients more in their care by building shared responsibility with clinicians and providing more support for self-management through digital solutions. The national Elective Care Transformation Programme, run by NHS England and NHS Improvement, recently published a handbook sharing best practice, expertise and learning from transformation of neurology elective care services.This was developed as part of two years of specialty-based transformation, when the programme supported frontline health and care systems to transform elective care services in 14 high-volume specialties so patients see the right person, in the right place, first time. Systems identified their issues, planned their interventions and implemented them in just 100 days – the 100 Day Challenge.In neurology elective care services, the challenge was undertaken by whole system teams in Liverpool, north east Essex, Salford and south west Hampshire between October 2018 and late January 2019.For those who are embarking on the journey, the conditions wheel (right) shows what, in our experience, is essential to successful transformation of outpatient elective care services, namely: • strong support from the leadership team across organisations: they need to absolutely understand and back the change, invest money and staff time in planning and implementation, be there to unblock any barriers, give teams permission to get on with it, and ensure transformation is an urgent priority for all involved, with a clear delivery timescale. • wholesystemworking:it’saboutre-thinkinghowserviceswork, what they do, and who does what. This will only achieve the desired results if the team includes the right people from across the organisations involved, along with patients or patient representatives, and other potential service providers – such as community pharmacists. A new way of working for many, it requires new approaches to team communications and support, including coaching. This may be face-to-face or remote. For

Director of the National Elective Care Transformation Programme, shares learning from the neurology 100 Day Challenge.

Dr Linda Charles-Ozuzu

Headache, migraine, chronic pain: making a difference in just 100 days

instance, Advice and Guidance – specialist support to GPs in primary care often provided through the NHS e-Referral Service – is a key component of work to transform outpatient services. • measurablegoals,supportedbyreal-timedataandevaluation,so teams can see what is working, and revise or expand their approach to ensure delivery.We have found that with these in place, change is clinically-led from the front and owned by those involved, which results in sustained and embedded improvement.

During the neurology 100 Day Challenge, north east Essex, Salford and south west Hampshire

focused on improving services for headache and migraine. Rising demand for consultant

appointments for headache was causing long waits for patients. Yet many were discharged with advice at their first appointment, which suggested that a different approach could improve patient experience, quality of care and efficiency.In north east Essex, the team implemented a new and improved headache pre-referral form and

provided GP education on the existing headache and migraine

pathway, which included an underutilised GP with Special Interest (GPwSI) provided

community clinic. Not one of 30 people surveyed in outpatients had been offered a

community appointment first. The team also increased responsiveness to GP telephone Advice and Guidance requests

by working with Consultant Connect. The connection rate for Advice and Guidance calls increased from 43.4% to 78%, with 72% of calls avoiding a referral. Local Consultant answer rates also improved. Five months after the 100 days ended, waiting times to see a neurologist had dropped from 28 to 23 weeks.The Salford 100 Day Challenge team introduced a community migraine clinic delivered by a specialist headache nurse, offering patients access to extended specialist appointments and prescribing without a long wait. It was digitally enabled, receiving electronic referrals, and accessing primary and secondary care records and the e-prescribing system. A portable fundal camera


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Wherever people are working, be it primary, secondary or community-based care, the P-CNS invited healthcare professionals to come and learn how colleagues from across the UK are responding in different

ways to the needs of patients living with complex neurological conditions. On 25th June 2019 at the Banqueting Suite in Birmingham the P-CNS, working in partnership with Rett UK and the MND Association ran an event that showcased various innovative and creative work to provide a coordinated multidisciplinary team approach to care in the community for patients and their families. The day was opened by the current Chair of ACPIN and neurophysiotherapist, Adine Adonis. Adine spoke about some of the challenges that there can be in obtaining a diagnosis and then ensuring the appropriate care is put in place to help patients achieve optimal quality of life. This was followed by Martin Turner, Consultant Neurologist, who spoke about the importance of offering ‘hope’ to a person and their family when they go through the despair of receiving the diagnosis of Motor Neuron Disease. He also outlined in an engaging presentation, which you can download from https://p-cns.org.uk/managing-

Showcasing the management of complex neuro conditions in the communityP-CNS Conference report

complex-neurological-conditions-in-the-community/, some of the challenges that need addressing to tackle the diagnostic delay, which can often be up to 12 months.The delegates were then presented with a selection of great examples of how services from across the UK are helping people with complex neurological conditions access the support they need in the community. This included talks from Consultant AHP, Catherine Atkinson who talked about her experience as an AHP in supporting the development of community services, which included an epilepsy service. Consultant Neurologist, Nick Fletcher from the Walton Centre described their Integrated Neurology Nurse Service and Claire Hendry, who is the project lead for The Life Link Clinic, described their weekly clinic set up to support relatives of patients with complex rehabilitation needs which has been running in The Walton Centre.To complete a great day, which also included a practical talk on managing difficult behaviours in the community, plus various research poster presentations, Adrian Williams, Chair of the Neurosciences CRG, the National Neurosciences Advisory Group and the West Midlands Senate, offered his considered opinion on the new NICE Guidelines for suspected neurological conditions.To access the slide presentations, the videos of the talks and the poster presentation videos please visit the P-CNS website at www.p-cns.org.uk.

enabled the specialist nurse to view optic discs and email images to the supervising consultant. At University Hospital Southampton (UHS), a four-week manual audit found 28% of the 43 patients referred required further investigations or could benefit from Advice and Guidance. During the 100 days, a new referral form was developed to support GPs to direct patients to a specialist headache pathway, away from general neurology. They also developed a patient toolkit to improve the understanding of waiting patients, and a GP Advice and Guidance toolkit. The Liverpool team’s focus was improving the management of chronic pain patients in primary care to reduce opioid prescribing and patient waits. The team included a GP, pain consultants, pharmacists, pain psychologist, physiotherapist and managers from the CGG, acute trust and The Walton Centre, a major neurology hospital. They piloted a multidisciplinary team (MDT) for chronic pain in primary care, reviewing the notes of patients from 17 GP practices waiting for a specialist

appointment. Of the 51 patients reviewed, 27% were deemed appropriate to be discharged to their GP with treatment advice, and 41% able to benefit from a community MDT appointment. Seven patients were seen by the MDT during the 100 days. All gave very positive feedback. This work provided the foundation for a redesigned referral pathway with MDT triage and the offer of a community MDT appointment. The team also undertook a survey of GP confidence in managing chronic pain and delivered a GP education session. This informed new chronic pain guidance for GPs, including referral pathways and prescribing. The neurology handbook has an overview of all the tested interventions with their benefits and opportunities, top tips, considerations for implementation, and advice on evaluation. The handbook, supporting webinars, case studies from pilot sites, further resources and useful information are on the Elective Care Community of Practice online collaboration platform. To join the Community of Practice, please email [email protected]


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24 • NEURODIGEST • ISSUE 2 • 2015

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