scottish muscle network annual report 2012/13...the scottish muscle network was first established in...
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Scottish Muscle Network
Annual Report 2012/13
Network Lead Clinician: Dr Richard Petty ([email protected] )
Network Manager: Karyn Robertson
Network Administrator: Laura Craig ([email protected])
Network Office,
RHSC, Dalnair Street
Glasgow, G3 8SJ
www.smn.scot.nhs.uk
Contents Executive Summary Introduction Aim/ Purpose/ Mission Statement Plans for the year ahead Network Governance Detailed description of progress over the reporting period Appendix 1 – List of Neuromuscular Disorders Appendix 2 – Steering Group Membership Appendix 3 – Finance Appendix 4 – Myotonic Dystrophy Audit Results Appendix 5 – Transition Audit Results Appendix 6 – Paediatric Logic Model
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1. Executive Summary The Scottish Muscle Network was first established in 1999 and is currently a national managed clinical network funded by NHS National Services Division (NSD). This annual report covers progress in the period April 2011 – March 2012. The Network aims are:
To raise awareness of neuromuscular disorders in the general population To promote the delivery of an equitable, high quality service to all patients
in Scotland with neuromuscular disorders regardless of where they live The Network Lead Clinician is Dr Richard Petty, Consultant Neurologist based in Glasgow. The Network has a manager and administrator and is overseen by a multidisciplinary steering group. Previous Leads have been from genetic and paediatric backgrounds. In the following year the Network plans to:
The Network will continue to hold an annual multidisciplinary educational conference. The next conference is planned for the 5th September 2013 in Edinburgh. Videoconferencing will make the conference accessible to remote and rural areas.
The Network will undertake a mapping of services across Scotland a and define an agreed set 0f priorities.
The network will work with colleagues to develop access to new generation genetic sequencing for all patients across Scotland
A third cycle of the Myotonic Dystrophy audit is due to be completed in 2013.
Following the success of previous events, the Network will continue to hold forums for discussion of neuromuscular cases and dissemination of medical knowledge.
The Network will hold a families event in conjunction with Scottish Disability Sport.
The Network will develop a diagnostic database using the clinical audit system.
Key successes for the Network in this reporting period were:
The annual multidisciplinary educational conference held at the Beardmore Hotel and Conference Centre with videoconferencing on 6th September 2012.
A repeat cycle of the Myotonic Dystrophy audit has been completed and actions to deliver continuous improvement continue to be progressed.
The transition materials developed by the Network were piloted and the results audited.
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Working with stakeholders toward the establishment of 3 Neuromuscular Care Advisor posts in Scotland to improve information giving, autonomy and life experience of patients and families with neuromuscular disorders.
an increase in both publications within peer reviewed journals as well as presentations and posters relating to the work of the network and audit arising from this work
More detailed information is available in Section 6. 2. Introduction The Scottish Muscle Network (SMN) is a national managed clinical network (MCN) originally established by Dr Robert McWilliam, Dr Richard Petty and Dr Douglas Wilcox with charitable funding from the Muscular Dystrophy Campaign in July 1999. In subsequent years funding depended on a number of charities including Yorkhill Children’s Foundation, Yorkhill Endowment Fund, Orchid Ball Foundation, Robert Louis Stevenson Trust and the Myotonic Dystrophy Support Group. The SMN is currently funded by NHS National Services Division (NSD) and hosted by NHS Greater Glasgow and Clyde through the MCN Department. This annual report shows the progress of the Scottish Muscle Network in the period 2011/2012. Managed Clinical Networks In 2002 the Scottish Executive issued NHS HDL (2002) 69 “Promoting the Development of Managed Clinical Networks in NHS Scotland” to confirm their commitment to the development of MCNs. MCNs are defined in the HDL as: Linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing professional and health Board boundaries, to ensure equitable provision of high quality clinically effective services throughout Scotland. This HDL also set out a list of core principles for MCNs that must be adhered to. This was reiterated in the HDL (2007) 21 “Strengthening the Role of Managed Clinical Networks”. 3. Aim/Purpose/Mission Statement
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When the Scottish Muscle Network was established, its main aims were:
To raise awareness of neuromuscular disorders in the general population To promote the delivery of an equitable high quality service to all patients in
Scotland with neuromuscular disorders regardless of where they live There are many neuromuscular disorders (see Appendix 1) and although they are individually rare they cumulatively account for some 6000 patients in Scotland - a prevalence similar to that of Multiple Sclerosis or Parkinson’s Disease. Many shorten life or lead to severe physical disability. They may be inherited or acquired with onset from the neonatal period through to later adult life. 4. Plans for the Year Ahead The Network have a number of ongoing pieces of work detailed in section 6 but have established the following key priorities for the year ahead:
The Network will continue to hold an annual multidisciplinary educational conference. The next conference is planned for the 5th September 2013 in Edinburgh. Videoconferencing will make the conference accessible to remote and rural areas.
The Network will undertake a mapping of services across Scotland and define an agreed set of priorities.
The network will work with colleagues to develop access to new generation genetic sequencing for all patients across Scotland
A third cycle of the Myotonic Dystrophy audit is due to be completed in 2013.
Following the success of previous events, the Network will continue to hold forums for discussion of neuromuscular cases and dissemination of medical knowledge.
The Network will hold a families event in conjunction with Scottish Disability Sport.
The Network will develop a diagnostic database using the clinical audit system.
An education event for allied health professionals is planned for April 2013. A review of the Duchenne Muscular Dystrophy Scottish Physiotherapy
Management Profile 5. Network Governance Dr. Richard Petty, Consultant Neurologist, NHS Greater Glasgow and Clyde was appointed lead clinician in April 2011. The Network Manager for the SMN is Karyn Robertson and the Network Administrator is Laura Craig. Both are based at the Network Office in RHSC Glasgow.
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The Network is overseen by a multidisciplinary steering group chaired by Ken Mitchell, Programme Manager, North of Scotland Planning Group until March 2013 and subsequently chaired by Marianne Hayward, Head of Profession for Dietetics, NHS Ayrshire and Arran. A number of network subgroups report to the network steering group and are listed below:
Paediatric subgroup Myotonic Dystrophy subgroup Patient Involvement subgroup Neuromuscular Respiratory subgroup Respiratory subgroup
6. Detailed Description of Progress Over The Reporting Period The full SMN workplan is shown on page 9 but a few key successes from the period are highlighted in more detail here. Myotonic Dystrophy Audit The Network agreed standards for the adult management of myotonic dystrophy in 2011. An audit was undertaken in the specialist clinics in Glasgow, Edinburgh, Dundee and Aberdeen in 2011 and a further cycle of the audit in 2012. The audit results and actions are covered in more detail in Appendix 4. Annual Educational Conference The annual educational conference of the Scottish Muscle Network was held in the Beardmore Hotel and Conference Centre on the 6th September 2012. The conference is primarily aimed at community professionals and AHPs. For the first time this year delegates were able to join the conference by videoconferencing. Topics covered included:
The power of sport and working together Assistive Technology Managing psychosocial challenges in NM disorders The role of the NM physiotherapist Parent perspective Genetic clinical trials
Feedback from the day was very positive and some of the evaluation results are shown below:
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A further conference is planned for September 2013, to be held in Edinburgh with videoconferencing again available. Audit of Transition Folder As part of the work of the transition subgroup, a patient held folder was developed to help with information storage and communication at transition. A pilot project was undertaken to establish the usefulness of the folder, the results of which are shown in Appendix 5.
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SCOTTISH MUSCLE NETWORK MANAGED CLINICAL NETWORK WORKPLAN
Network Aims
• To raise awareness of neuromuscular disorders in the general population • To promote delivery of an equitable high quality service to all patients in Scotland with neuromuscular disorders
regardless of where they live
RAG status key
RAG status Description
RED (R) Little/no progress been made to date to achieving network objective/standard
AMBER (A) Significant progress been made to date to achieving network objective/standard, however further work is required to fully achieve the network objective
GREEN (G) The network has been successful in achieving the network objective/standard
Objective Planned
start/end dates
Responsible Description of progress towards meeting objective
Outcome/ evidence
RAG status
1. Patient centred: Providing care that is responsive to individual preferences, needs and values and assuring that patient values guide all clinical decisions.
1.1 Each network should include representation by service users and the voluntary sector in its management arrangements, and must provide them with suitable support in discharging that function (HDL 2007).
Service users and their representatives are included in the membership of the steering group of the Network.
2007 and ongoing
Network Manager/ Administrator
Service user and family representatives have been included in the steering group since organisation in 2007. Representatives of the five main charities have been invited to be part of the steering group.
Steering group membership is available on request.
G
The Network has a patient involvement group that includes service users and their representatives. The group meets twice a year and reports directly to the network steering group on service user views through the chair.
April 2009 and ongoing
Network manager/ Administrator
The patient involvement group has met regularly.
Meeting dates and minutes available.
G
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The network holds regular meetings to enable service usersand their families to engage with the Network and their local clinicians and inform practice.
2009 and ongoing
Network Manager/ Administrator/ Local leads
Meetings have continued to be held in the West of Scotland. A national meeting in conjunction with Disability Sport is planned for August.
Meeting dates: 30/04/2012 11/06/2012 05/11/2012 25/02/2013
G
The Network provides patients with information on how to become involved with the network through leaflets handed out in clinics.
2009 and ongoing
Clinicians The leaflet has been handed out in paediatric clinics to date and will be further developed for use in adult services.
The leaflet is available in hard copy and an electronic version is available on the network website.
A
1.1 Each Network should develop mechanisms for capturing service users’ and carers’ views, and have a clear policy on dissemination of information to service users and carers, and on the nature of that information (HDL 2007).
The network will develop a patient experience questionnaire for use in clinics.
2013-2014 Patient Action Group
The Network will produce a leaflet for patients with information about services in Scotland and signposting to helpful organisation (also equitable)
2010 -2012 Patient Involvement Subgroup
The leaflet is currently availablein draft form.
A
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The Network will develop a training and education plan to address patient and family needs for both paediatrics and adults learning from the experience in Denmark.
Patient Involvement Subgroup
A group of professionals from SMN visited Denmark in 2010 and a report has been produced. There is a programme of education and training for patients and families and the Network are considering education and training for patients and families in Scotland.
The Denmark Report is available.
A
The Network will develop patientheld records and personal
“information packs”. These will include links to up to date information.
2012 and ongoing
Information packs have been developed for Duchenne Muscular Dystrophy for families at diagnosis. Packs for other conditions will continue to be developed. As part of the work on transition, the SMN has developed and audited the use of patient hand held records.
Information pack available on request. Patient held record available on request.
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The Network will hold an event specifically for the paediatric SMA patients and their families.
2013
2. Safe: Avoiding injuries to patients from care that is intended to help them. 2.1 Promote best possible practice across Scotland (NSD Guidance)
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The Network will provide patients with myotonic dystrophy with a keyring tag highlighting that they have myotonic dystrophy and the website address for the Network where anaesthetic guidelines for patients with myotonic dystrophy will be available.
2010 and ongoing
Myotonic Dystrophy Subgroup
Keyrings have been developed and produced and are handed out in myotonic dystrophy clinics. Anaesthetic guidelines have been agreed.
Keyring available on request. Anaesthetic Guidelines are available on the SMN website. Myotonic Dystrophy audit showed that 75% able to produce an alert device at clinic.
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The Network will continue to promote the use of the “Management of Adults with Myotonic Dystrophy Guideline”, developed in 2009, sending it out to GPs and general clinicians.
2009 and ongoing
Myotonic Dystrophy Subgroup
Leaflet produced “Management of Adults with Myotonic Dystrophy: A Guide for Professionals”. The leaflet is currently available on the website and continues to be sent out via the myotonic dystrophy clinics. Evidence is currently being reviewed in order to update the guideline.
Leaflet is available on the SMN website
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2.2 Develop and promote standards/ guidelines/ protocols (NSD Guidance) The Network will produce guidance for the management of
2010/2011
FSH
The FSH Guidelines for adult management have been produced and ratified by the steering group. The paediatric subgroup have also agreed a paediatric FSH guideline.
The FSH Guideline is available on the network website.
G
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The Network will produce guidance for the management of congenital myotonic dystrophy.
2011 - 2012 Paediatric Subgroup
The guidance is available in draft form.
A
The Network will establish a respiratory subgroup which will develop evidence based management guidelines and protocols.
2011 and ongoing
Respiratory Subgroup
A respiratory subgroup has been established and is collating information on neuromuscular respiratory services in Scotland.
Meeting agenda and minutes available on request.
A
The Network will establish a cardiac subgroup which will develop evidence based management guidelines and protocols.
2011 and ongoing
Network lead clinician/ manager
The Network lead clinician and manager have established links with the FANS network to develop this area.
A
3. Effective: providing services based on scientific knowledge. 3.1 All health professionals in the Network must participate actively in audit and in open review of results (HDL 2002).
Patients with myotonic dystrophy will be offered the opportunity to attend one of the specialist myotonic dystrophy clinics in Glasgow, Edinburgh, Dundee or Aberdeen. The clinics will work to agreed standards and will collect information to allow audit of the standards (also equitable).
2009 and ongoing
Myotonic Dystrophy Subgroup
Standards have been produced for the specialist myotonic dystrophy clinics and information is being collected inthe myotonic dystrophy database. The first cycle of the audit was completed in 2011 and a second cycle in 2012.
Standards are available on the Network website. First cycle audit results were published in annual report 2011/2012. Second cycle audit results published in 2012/2013 annual report.
G
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The Network will work to agreed standards for the paediatric management of Duchenne Muscular Dystrophy (also equitable).
2008 and ongoing
Paediatric Subgroup
Standards were produced and disseminated in 2008. An audit against the standards has now been completed. A proforma is currently being agreed for ongoing audit.
Standards are available on the SMN website. Audit results published in annual report 2011/12.
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4. Efficient: Avoiding waste, including waste of equipment, supplies, ideas and energy.
4.1 Networks’ education and training potential should be used to the full, in particular through exchanges between those working in the community and primary care and those working in hospitals or specialist centres (HDL 2007).
The Network runs an annual educational meeting for professionals from around Scotland to ensure they are kept up to date on the latest information/ developments on neuromuscular disorders. The conference is held at different venues around Scotland to enable as many professionals as possible to attend (also equitable).
1999 and ongoing
Network Manager/ Administrator/ Education and Training Subgroup
Annual conference was held at the Beardmore Hotel and Conference Centre on 6th September 2012 and attended by approximately 70 health professionals. There was an opportunity to join the conference by VC and sites in Inverness, Aberdeen and Fife used this method. A further conference is planned for 2013 in Murrayfield, Edinburgh.
Conference programme and evaluation report available on request.
G
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The Network provides a forum for the dissemination of medical knowledge and for the discussion of problematic, instructive and challenging cases with clinical specialists from around Scotland (also equitable).
2010 and ongoing
Lead clinicians/ Network Manager/ Administrator
An event was held on 13th September 2012 in Aberdeen and attended by approximately 40 professionals. Further events are planned for Glasgow in May 2013 and November 2013 in Perth.
Programme and evaluation of event available on request.
G
The Network will establish an education and training subgroup to consider the educational needs of the Network and develop a strategy to meet these needs.
2013/14 andongoing
Network Manager/ Administrator/ Education and Training Group
R
Following discussions with the RCGP about primary care needs, the Network will develop one page summary information sheets on various neuromuscular conditions.
2012/2013 Education and Training Group
Summary sheets have been prepared and reviewed by GPs.
Summary sheets will be available on the website when finalised.
A
4.2 Each Network must have a defined structure that sets out the points at which the service is to be delivered, and the connections between them. This will usually be achieved by mapping the journey of care (HDL 2007).
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The Network has a multidisciplinary Duchenne Muscular Dystrophy Care Pathway highlighting the interventions by healthcare professionals at each stage of DMD. This also includes helpful resources for clinicians and patients.
2009 - 2010 All The DMD Care Pathway has now been completed and is available on the SMN website.
The DMD Pathway is available on the SMN website.
G
The Network will develop and agree a national pathway and materials for transition for young people with a neuromuscular disorder.
2008 - 2011 Transition Subgroup
Materials have been produced and circulated. A pilot of materials is currently underway with review during 2012/2013.
Materials available on request.
G
4.3 Telemedicine The Network will explore the role of telemedicine with long term disease management for neuromuscular patients.
2011 - 2012 Myotonic Dystrophy Subgroup
The Network plan to pilot the delivery of a myotonic dystrophy clinic between Aberdeen and Shetland. Some support issues to be resolved.
Evaluation of clinic from patient and professional experience.
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5. Equitable: Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographical location or socio-economic status.
5.1 Each Network must have a defined structure which sets out the points at which the service is to be delivered and the connections between them (HDL 2007).
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Further discussions will take place with local clinicians in eacharea to further identify current services and pathways for patients with neuromuscular disorders across Scotland.
Report to be available October 2013
Lead Clincian/ Network Manager
6. Timely: Reducing waits and sometimes harmful delays for both those who receive care and those who give care.
Network agendas and papers will be distributed one week before meetings and minutes will be circulated within three weeks of the meeting.
2012 and ongoing
All A process has been established to identify any items the members of the group have for discussion three weeks prior to the meeting. Following discussion with the chair, this forms the basis of the agenda to be circulated one week prior to the meeting. Minutes are approved by the Chair before circulation to the rest of the group following the meeting.
A database is held of the dates of circulation and an audit report can be produced on request.
G
Appendix 1 – Neuromuscular Disorders All genetic and acquired disorders where primary pathology is thought to arise in muscle. We also cover inherited disorders of anterior horn cells (with exception of Motor Neurone Disease) and peripheral nerve disease (Charcot Marie Tooth disease). The range of disorders addressed is therefore changing with medical advance but the overall prevalence approaches that of MS and Parkinson’s disease at circa 100/100,000. The range is indicated in the table below.
Diagnostic Group Common examples Muscular Dystrophy (MD) Duchenne and Becker muscular dystrophy
Facio-scapulo-humeral muscular dystrophy Oculopharyngeal muscular dystrophy Dysferlinopathy Other defined dominant and recessive muscular dystrophy
Congenital Muscular Dystrophy
Ullrich CMD Merosin-negative CMD Dystroglycanopathy Any undiagnosed with onset < age 1y
Congenital Myopathy Nemaline myopathy Myotubular/Centronuclear myopathies Central core disease Minicore /Multi-mini core myopathy Congenital fibre type disproportion Any undiagnosed myopathy with onset < age 1y
Distal Myopathy including the myofibrillar myopathies Other myopathy Inclusion body myositis
Inflammatory myopathy Dermatomysitis
Myotonic syndromes Myotonic Dystrophy types 1 and 2 Schwartz-Jampel syndrome
Ion channel disease Myotonia/Paramyotonia Congenita Anderson syndrome Periodic paralysis
Metabolic Pompe’s disease (acid maltase deficiency) McArdle’s disease CPT2 deficiency
Congenital myasthenia Slow/fast channel syndrome Spinal Muscular Atrophy Classical (SMN related) SMA eg Types I,II,III
Kennedy’s disease HMSN/CMT CMT (Charcot-Marie-Tooth disease, same as HMSN) Other neuromuscular All mitochondrial disorders with clinical myopathy
Distal arthrgryposis A comprehensive list of genetic diagnoses within the field of neuromuscular diseases is available at: http://www.musclegenetable.org/
Appendix 2 – Steering Group Membership
Chair – Marianne Hayward, Head of Profession for Dietetics, NHS Ayrshire and Arran Previously Ken Mitchell, Programme Manager – Acute Services and Workforce, North of Scotland Planning Group (until March 2013) Karen Naismith, Consultant Paediatrician, NHS Tayside Iain Horrocks, Consultant Paediatric Neurologist, NHS GGC Cheryl Longman, Consultant Geneticist, NHS GGC/ Lothian Marina DiMarco, Specialist Neuromuscular Physiotherapist, West of Scotland Helen Gregory, GP Geneticist, NHS Grampian Richard Petty, Lead Clinician & Consultant Neurologist, NHS GGC Elaine Warner, Scottish Council Muscular Dystrophy Campaign Martin Denvir, Consultant Cardiologist, NHS Lothian Iain Findlay, Consultant Cardiologist, NHS GGC Alex Baxter, Consultant Paediatrician, NHS Lothian Chris Adams, Consultant Orthopaedic Surgeon, Spinal Surgery Service, Edinburgh Margaret Neil, Family Representative Yvonne Robb, Genetic Neuromuscular Nurse Specialist, NHS Lothian Gillian Paton, MDC Care Advisor, East of Scotland Maria Farrugia, Consultant Neurologist, NHS GGC Alison Couston, Muscular Dystrophy Campaign Representative/ Parent Anthony Bateman, Consultant in Critical Care and Genetics, NHS Lothian Wilma Stewart, MDC Care Advisor, West of Scotland Scott Davidson, Consultant Respiratory Physician, NHS GGC Jacky Yirrell, Specialist Neuromuscular Physiotherapist, East of Scotland Anne Keddie, Specialist Neuromuscular Physiotherapist, North of Scotland Lynne Rule, Occupational Therapist, NHS Tayside Philip Davies, Consultant Respiratory Paediatrician, NHS GGC Alex Davidson, Joint Improvement Team, Scottish Government Karyn Robertson, Network Manager Laura Craig, Network Administrator
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Appendix 3 – Finance Income Annual budget from NSD £5,000 Conference Income £1,200 Total £6,200 Expenditure SE579 Communications and Stationery £515 SE580 Hotel Services £594 SE600 Other Non Pay £3,779 SE570 Travel, Expenses, Training £120 Other costs £519 Expenses for patient/family events £47.08 Total £5574.08
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Appendix 4 – Myotonic Dystrophy Audit Results Clinical standards for myotonic dystrophy were developed in 2010 and minor amendments made in 2012. Standard Target Result (2012) Result (2011)
1. All patients with a clinical diagnosis of DM1 should have molecular confirmation of diagnosis
95% of patients ever seen at specialist management clinic have a molecular diagnosis of DM1
99% (459/464)
99% (436/439)
2. Patients with DM1 have an annual review at a clinic that follows the SMN Management Guidelines: Management of Adults with Myotonic Dystrophy
90% of patients attending a specialist management clinic are reviewed annually
46% (123/268) Within 18 months - 91% Within 24 months – 95%
58% (148/255) Within 18 months – 92.5% Within 24 months – 98%
90% of patients attending a specialist management clinic receive an automated ECG
90% 92%
(130/145) (155/169)
90% of patients attending a specialist management clinic have their Epworth Sleepiness Score (ESS) assessed
96% 99%
(292/303) (305/307)
3. Patients with DM1 receive appropriate monitoring and referrals according to the SMN Management Guidelines: Management of Adults with Myotonic Dystrophy: A Guide for Professionals
90% of patients attending a specialist management clinic have a random blood glucose (RGB) and thyroid function recorded
84% (221/264)
84% (223/226)
4. Patients with DM1 are given appropriate information and support
75% of return patients attending a specialist management clinic can produce an alert device at clinic
70% 67%
(194/277) (175/250)
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90% of patients attending a specialist management clinic are advised of anaesthetic and sedation risks
98% 98%
(297/303) (302/307)
90% of patients attending a specialist management clinic are told about the MDC Care Advisor and the DM1 support group
97% (295/303)
92% (232/250) (Aberdeen clinic not included)
There were two criteria where further work was needed: 1. Achieving timely annual review Two projects have been undertaken to look at optimising attendance:
- In Glasgow for 16 months during 2011-12, phone reminders were made on alternative weeks. 47/65 (72%) attended in the reminder group and 50/80 (62.5%) attended in the non-reminder group. Some patients were uncontactable and a text reminder project is now planned.
- In Edinburgh attendance was compared between using an allocated appointment system in 2011 (81/92, 80% attended) with a choose and book system in 2012 (85/86, 99% attended). Choose and book will now be adopted in Edinburgh and discussed elsewhere.
2. Return patients attending a specialist management clinic can produce an alert device at clinic Work has been ongoing to improve this indicator since an initial pilot audit in 2010 showed that only 47% patients were able to do this. Since then several new alert devices have been implemented by the Network, including a keyring and revised care card. This has seen the figures rise to 70% in 2012 and would hope see this increase again in 2013.
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Appendix 5 – Transition Folder Audit Results In order to audit the folder, distribution has to be standardised to ensure all families are receiving the same information in the same way so results are comparable. Three key members of the sub group from each region (Anne Keddie, North, Jacky Yirrell, East and Marina Di Marco, West) distributed the folder to the young person and their family with an explanation of the folder. Consent was taken from either the young person if over 16 years or from the parent and young person if under 16 years. The families who took part agreed that they would be willing to accept the folder and participate in the audit. The young person and their family were asked to commence using the folder for 12 months. After 6 months they would be asked to complete a questionnaire by telephone or face-to face and this would be repeated after 12 months. The folder would be introduced to young people between the age of eleven and eighteen years. 25 folders were introduced. 15 in the West of Scotland, 5 in the East of Scotland and 5 in the North of Scotland. All healthcare professionals involved with the families received a letter informing them that their patient would be maintaining a PHR. A transition pathway was also developed to aid the transition process for families and included in the folder. Questionnaire results six months after distribution Results from 18 out of a possible 24 families were obtained (one patient died during the six month period). Other patients were either difficult to obtain via the telephone (2), had moved (1) or had lost the folder (2).
1. Did you receive enough information when the yellow folder was introduced in order to help you use it?
Yes: 18 No: 0
Comments: Lots of info in it Very helpful Put all in and keeps it safe 2. Was there enough information in the yellow folder?
Yes: 17 No:1
Comments: No information – just sections Covered everything Similar folder from Cordia (care company)
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3. Have you brought your yellow folder to appointments?
Yes: 3 No: 15
Comments if not taking to appointments: Didn’t think needed to take it
Too much to be thinking about – was one more thing on top of everything else too busy Planning to take it in the future Keep forgetting No appointments yet Not enough in it yet…..just getting organised but plan to do it in the future Don’t feel a need Good to help keep appointment dates – keeps current info at the front Don’t feel I need to Too much hassle Put letters in it but forget to take to appointments Nothing in it as yet
4. Are you storing your hospital letters and information in the folder?
Yes: 14 No: 4
Comments: Too much to do – don’t get so many letters regarding transition Don’t feel it’s needed Already have a folder in place Very helpful Feel as though I know where I am with it Haven’t received any letters as yet 5. Do you think the yellow folder is helpful?
Yes: 15 No: 3
Comments: Better than a big pile of paper in my house – storing school reports and letters
Would be helpful in younger children – not so helpful to us now
Already had a system in place for storing files Helpful if needed Keeps all the info in one place
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Well thought out. Can see why it will help and will start using it when he moves to adult services
Everything to hand – much easier Don’t lose track and give info when needed. Very enthusiastic. Helpful and handy Keeps everything together Care Manager often asks for info so it keeps it all together and
they can collect it easily from the folder. Helpful but getting too big Mum asks all the questions so I don’t need the folder but she
uses it. Keeps everything together Somewhere nice to keep everything together
6. Does your yellow folder help your discussion with medical staff at
clinic appointments? Comments: Needs more input from medical point of view – would like
more frequent monitoring. Son has LD therefore Mum still has to manage the case and has own system in place Not yet used but will use it when in the adult services Don’t have many appointments to take it too Not attended an appointment yet Not as yet Keeps everything together and good for reference Particularly good when (hospital staff) they ask about “When did you last see…..” Helps keep everything together Good to find results of appointments No….can discuss health really well Not really Yes…feel as though I know what I’m talking about and able to refer to folder in clinic to help with explaining things
7. Who takes overall responsibility for using the yellow folder? Young person: 5 Family members: 14 Other: 1 *One reply states both young person and family member take responsibility and one reply states both family member and PA 8. Will you start / continue to use the yellow folder after this pilot
has finished? Yes: 14 No: 3 Don’t know: 1
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From the response to the questionnaire as well as informal discussion with some families, the following key points have been concluded: Resilience: Transition is not a challenging process for all families. Depending upon the family circumstances and indeed the personality of the patient and family involved, some families have developed their own strategies for communicating with professionals that are both effective and efficient. In these families it is felt that resilience is high and an organised coordinated approach has been fostered. In such cases, the transition process is neither problematic nor challenging and whilst “handy”, a PHR is not entirely necessary. Condition Dependant: Not all young people with a neuromuscular disorder transfer to multiple adult clinics. Young people who have a condition such as Friedreich’s Ataxia, Charcot Marie Tooth or Becker Muscular Dystrophy did not feel they needed to store their information in a folder although they could see the benefits of keeping all of their information together in the same place. However, patients who have multiple clinics to attend such as those with Duchenne Muscular Dystrophy felt it was advantageous to keep all of their medical and social care records together. They felt better able to communicate with healthcare staff as they were more informed. On the whole, they felt better able to understand their condition as it grouped together information such as respiratory health and cardiac care in relation to proposed surgery for example. Introduction of the PHR: Families who were using the PHR and found it helpful also suggested that rather than wait until transition, it would have been useful to have such a document from diagnosis onwards. This would enable families to get in to the habit of maintaining their records from an early age and some felt it may even help facilitate discussion about the condition with their child. Both communication and education are important in transitional healthcare and if the PHR can assist with this from diagnosis, then this would be beneficial to the families and healthcare professionals involved. Recommendations:
• The paediatric healthcare team should commence the transition process when the young person starts Secondary Education although young person’s cognitive ability should be considered.
• At this stage the Specialist Physiotherapy Service and Regional Care
Advisers should assist the Lead Consultant in coordinating the transition process. The specialist physiotherapy and care adviser service are well placed to discuss the PHR with the family as these services are involved
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from diagnosis through to the palliative phase and are well known to families living with a neuromuscular condition and in particular to those families where children require complex care management.
• From diagnosis, the family of young people with complex neuromuscular
conditions such as Duchenne Muscular Dystrophy and Congenital Muscular Dystrophy should be offered a PHR.
• When the young person enters the transitional stage (usually around 12 but
perhaps older in some cases if there is a learning difficulty or exceptional family circumstances), a PHR should be offered.
• It is acknowledged that where families display particular resilience with the
management of the patient’s healthcare needs, effective transition is managed and coordinated by the family member.
Appendix 5 – Paediatric Logic Model
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