LED BY GRAHAM ATHERTONSUPPORTED BY

NAC CENTRE MANAGER CHRIS HARRIS

NEW STRUCTURE OF THE NHS AND HOW IT EFFECTS USJULIA HAMER - DIRECTORATE MANAGER OF RESPIRATORY

MEDICINE

NATIONAL ASPERGILLOSIS CENTREUHSM

MANCHESTER

Support Meeting for Aspergillosis Patients &

Carers

Fungal Research Trust

Programme

1.30 Julia Hamer– NAC Manager 2.00 Graham Atherton – Your subject 2.30 Patients Discussion (Break) 3.00 Group discussion/Requests for information

Artificial organs – kidney Food for patients meeting? Patients survey

3.20 Q & A from the floor or online

Changes in Commissioning in Changes in Commissioning in for the National Aspergillosis for the National Aspergillosis

Centre 2013/14Centre 2013/14

NHS EnglandNHS England

NHS England will play a key role in the NHS England will play a key role in the Government’s vision to modernise the health Government’s vision to modernise the health service with the key aim of securing the best service with the key aim of securing the best possible health outcomes for patients by possible health outcomes for patients by prioritising them in every decision it makes.prioritising them in every decision it makes.

Formally established as the NHS Commissioning Formally established as the NHS Commissioning Board on 1 October 2012, NHS England is an Board on 1 October 2012, NHS England is an independent body at arm’s length to the independent body at arm’s length to the Government. Government.

http://www.england.nhs.uk/http://www.england.nhs.uk/

Clinical Commissioning Clinical Commissioning GroupsGroups

Clinical Commissioning Groups are responsible for planning and designing local Clinical Commissioning Groups are responsible for planning and designing local health services in England. They do this by 'commissioning' or buying health and care health services in England. They do this by 'commissioning' or buying health and care services including:services including:

Planned hospital care Planned hospital care Urgent and emergency care Urgent and emergency care Rehabilitation care Rehabilitation care Community health services Community health services Mental health and learning disability services Mental health and learning disability services

To do this Clinical Commissioning Groups work with patients and health and social To do this Clinical Commissioning Groups work with patients and health and social care partners (e.g. local hospitals, local authorities, local community groups etc) to care partners (e.g. local hospitals, local authorities, local community groups etc) to ensure services meet local needs. CCG boards are made up of GPs from the local ensure services meet local needs. CCG boards are made up of GPs from the local area and at least one registered nurse and one secondary care specialist doctor.area and at least one registered nurse and one secondary care specialist doctor.

Clinical Commissioning Groups are responsible for arranging emergency and urgent Clinical Commissioning Groups are responsible for arranging emergency and urgent care services within their boundaries, and for commissioning services for any care services within their boundaries, and for commissioning services for any unregistered patients who live in their area.  General Practices have to belong to a unregistered patients who live in their area.  General Practices have to belong to a Clinical Commissioning Group.Clinical Commissioning Group.

Specialised Services Specialised Services CommissioningCommissioning

Specialised services are those provided in Specialised services are those provided in relatively few hospitals, accessed by comparatively relatively few hospitals, accessed by comparatively small numbers of patients but with catchment small numbers of patients but with catchment populations of more than one million. These populations of more than one million. These services tend to be located in specialist hospital services tend to be located in specialist hospital trusts that can recruit staff with the appropriate trusts that can recruit staff with the appropriate expertise and enable them to develop their skills.expertise and enable them to develop their skills.

Specialised services account for approximately Specialised services account for approximately 10% of the total NHS budget, spending circa £11.8 10% of the total NHS budget, spending circa £11.8 billion per annum. The commissioning of billion per annum. The commissioning of specialised services is a prescribed core specialised services is a prescribed core responsibility of NHS England.responsibility of NHS England.

Clinical Reference GroupsClinical Reference Groups

CRGs cover the full range of specialised services CRGs cover the full range of specialised services and are responsible for providing NHS England and are responsible for providing NHS England with clinical advice regarding these directly with clinical advice regarding these directly commissioned services. The CRGs are made up of commissioned services. The CRGs are made up of clinicians, commissioners, Public Health experts clinicians, commissioners, Public Health experts and patients and carers, and are responsible for and patients and carers, and are responsible for the delivery of key ‘products’ such as service the delivery of key ‘products’ such as service specifications and commissioning policies, which specifications and commissioning policies, which enable NHS England to commission services from enable NHS England to commission services from specialist providers through the contracting specialist providers through the contracting arrangements overseen by its Area Teams.arrangements overseen by its Area Teams.

There will be 75 CRG’s in total.There will be 75 CRG’s in total.

Funding StreamsFunding Streams

Initially via CCG Initially via CCG

May switch to Specially May switch to Specially Commissioned fundingCommissioned funding

May change later in treatment back May change later in treatment back to CCGto CCG

Changes from the Patient Changes from the Patient PerspectivePerspective

NoneNone

Only difference may be for funding Only difference may be for funding for the expensive drugs for the expensive drugs (Pozaconozole, Micafungin etc). The (Pozaconozole, Micafungin etc). The processes for future funding these processes for future funding these remains unclear still.remains unclear still.

Any questions?Any questions?

Suggest a subject

Rather than have all of our talks led by NAC staff and their expertise we are trying a new idea whereby we ask patients & carers to suggest topics for us to talk about

We will mainly use local staff for these talks (i.e. me for many subjects or another available staff member if appropriate)

Suggest a subject

Can be on any relevant subject you would like to hear our opinion or get our help with

Send suggestions to admin@aspergillus.org.ukPass notes to me at clinic or at the meetingPhone them in (24 hrs) at 0161 291 5866

HEATWAVE

http://www.nhs.uk/Livewell/Summerhealth/Pages/Heatwave.asp

Heatwave

An average temperature of 30°C by day and 15°C overnight would trigger a health alert (this figure varies slightly around the UK). These temperatures can have a significant effect on people's health if they last for at least two days and the night in between.

Heatwave

The Meterological Office has a warning system that issues alerts if a heatwave is likely. Level one is the minimum alert and is in place from June 1 until September 15 (which is the period that heatwave alerts are likely to be raised).

The minimum alert simply means that people should be aware of what to do if the alert level is raised.

If a level two alert is issued, there is a high chance that a heatwave will occur within the next few days.

The level three alert is when a heatwave is happening.

The level four alert is when a heatwave is severe.

Problems caused by heatwave

The main risks posed by a heatwave are: dehydration (not having enough water)overheating, which can make symptoms

worse for people who already have problems with their heart or breathing

heat exhaustionheatstroke

Heatwave – what can we do?

Shut windows and pull down the shades when it is hotter outside. If it’s safe, open them for ventilation when it is cooler.

Avoid the heat: stay out of the sun and don’t go out between 11am and 3pm (the hottest part of the day) if you’re vulnerable to the effects of heat.

Keep rooms cool by using shades or reflective material outside the windows. If this isn't possible, use light-coloured curtains and keep them closed (metallic blinds and dark curtains can make the room hotter).

Heatwave – what can we do?

Have cool baths or showers, and splash yourself with cool water.

Drink cold drinks regularly, such as water and fruit juice. Avoid tea, coffee and alcohol.

Stay tuned to the weather forecast on the radio or TV, or at the Met Office website.

Plan ahead to make sure you have enough supplies, such as food, water and any medications you need.

Identify the coolest room in the house so you know where to go to keep cool.

Wear loose, cool clothing, and a hat if you go outdoors.

Heat exhaustion

headachesdizzinessnausea and vomitingmuscle weakness or crampspale skina high temperatureIf this happens, move somewhere cool and drink plenty

of water or fruit juice. If you can, take a lukewarm shower or sponge yourself down with cold water.

Heatstroke can develop if heat exhaustion is left untreated, but it can also occur suddenly and without warning.

Heatstroke

headaches nausea intense thirst sleepiness hot, red and dry skin a sudden rise in temperature confusion aggression convulsions loss of consciousness If you suspect someone has heatstroke, call 999 immediately.

Heatstroke can result in irreversible damage to your body, including the brain, or death.

Summary

EducatePreparePreventVigilance – look out for weather warnings

Much of south of England now at level 3

Keep cool, keep drinking cool drinks

Subjects

Fran Capitanio Side effects of medication and methods of dealing

with that on top of dealing with a flare up of disease

Mike Leach is there a half life to the aspergillus. if the anti fungal

is working should there be a patterned reduction in IgE

What are side effects?

A side effect is an effect, whether therapeutic or adverse, that is secondary to the one intended; although the term is predominantly employed to describe adverse effects, it can also apply to beneficial, but unintended, consequences of the use of a drug.

What causes them?

All drugs taken orally act on the whole body so can act on parts we don’t want them to!

Some effects are unwanted effects of the main action of the drug – for example steroids are useful because they suppress inflammation. However that also means they lower the efficiency of our immune system – it’s the same system that causes inflammation!

What causes them?

Toxicity: Amphotericin B is known to be toxic to kidneys – except it isn’t! The chemical used to dissolve it in water is toxic!

Allergic reactions – any drugSkin – very common for topical drugsGastrointestinal upset – very common

Unpredictable – Itraconazole and heart failure

Can be serious! Be aware!! Always report to your doctor if on any drug

Information

The leaflet you get with your pack of drug will contain all of the side effects identified by the manufacturer when it was testing the drug for safety – but it often doesn’t contain ALL side effects

When testing ALL other drugs are stopped so as to be able to just see what the drug under test does.

In the real world the drug will be taken with many other drugs – and drugs can interact with each other causing more side effects

Drug Side effect - reporting

Medicines and Healthcare Producers Regulatory Agency (MHRA) ‘Yellow Card’ system https://yellowcard.mhra.gov.uk/

It is important for people to report as these are used to identify side effects and other problems which might not have been known about before. If a new side effect is found, the MHRA will review the way that the medicine can be used, and the warnings that are given to people taking it to minimise risk and maximise benefit to the patient.

MHRA website

Interactions – what are they?

Typically, interactions between drugs come to mind (drug-drug interaction).

However, interactions may also exist between drugs and foods (drug-food interactions), as well as drugs and medicinal plants or herbs (drug-plant interactions).

Interaction – when do they occur?

Typically, interactions between drugs come to mind (drug-drug interaction).

However, interactions may also exist between drugs and foods (drug-food interactions) – alchohol!

as well as drugs and medicinal plants or herbs (drug-plant interactions) Grapefruit & azole!

Be aware!

Interaction – are they dangerous?

Usually the effects are mild, but it can get more serious

Antifungal (azoles) are notorious for side effects as they will interfere with many other drugs. They tend to disrupt the system (cytochrome P450) that breaks down other drugs leading to higher doses = problems with toxicity

Drugs interfered with include prednisone!

What can be done?

Interactions Reduce / re-evaluate dose of both drugs use different drug (a different antifungal perhaps) Use another drug to treat side effect

Read your pack leaflet to note side effects Be aware that any new problem could be a side effect

– even if you are not on a new drug See your doctor and tell them about it! Check antifungals against our database

Database – side effects

Several available online Drugs.com For antifungals see Antifungal drug Summaries of

Product Characteristics (SPC): http://www.aspergillus.org.uk/secure/treatmentindex/index.php

Offline – your pharmacist/doctor

Database - Interactions

Drugs.com is good overallAspergillus website has a dedicated database for

antifungals that we keep up to datehttp://www.aspergillus.org.uk/nac/interactions/

patientchoosegeneric.php*

*also available as an Android and iPhone App under ‘antifungal interactions’

Offline - Pharmacist & doctor

Regrown organs

Regrown organs - progress

Kidney – complex organHas been stripped down & rebuilt using stem

cells (rat) and then re-implanted into hostWorks with 5-10% efficiency compared with

original – thought to be sufficient to avoid transplant!

Does aspergillus have a halflife?

Mike Leach is there a half life to the aspergillus? If the

anti fungal is working should there be a patterned reduction in IgE

I will assume Mike is talking about ABPA

Immune system

Our immune system has many parts that can correspond to several different waves of attack against infection Physical barriers (skin, mucus) Immediate non-specific (no memory) Adaptive (specific – provides immunity)

http://www.aspergillus.org.uk/newpatients/immune.php

IgE

Immunoglobulin E (IgE) – an antibodyAlso have IgA, IgG, IgM – each plays a

different role

IgE main role – defence against parasites!Normally very low levelsIgE is released as soon as an infection is

detected – the hypersensitivity response. Gets all immune cells ready for action – allergy!

IgE

IgE

Role in disease

People with lots of IgE circulating tend to be atopic – very sensitive to particular antigens (pollen, mould)

When stimulated triggers release of large amounts of histamine

Causes airway constriction, inflammation, runny nose eg hay fever

Once stimulus goes symptoms disappear as no more IgE made.

ABPA

Aspergillus permanently irritating sensitive lung tissue

IgE permanently stimulatedScarringWe can suppress IgE & histamine production

using steroid drugsAlso seem to be able to do it using antifungal

in many casesAnti – IgE drugs eg Xolair

Flare - up

Suspect some new tiny growth irritating lung ?Reaction to more moulds in the outside airOther infectionsOther IgE stimulating allergens

Steroid dose increased = fast relief=no new scarring

As we shut down IgE production patients feels better – measured IgE falls.

Usually use total IgE measurements but can do Aspergillus-specific IgE

Other Ig’s

Indicate infection rather than allergyWill cover this next month!

Thank You

“The best chance we have of beating this illness is to work together”

Living with it, Working with it, Treating it

Fungal Research Trust