- The document discusses a support meeting for aspergillosis patients and carers. It includes an agenda with presentations on new NHS structures, changes in commissioning of specialized services like the National Aspergillosis Centre, and a Q&A session. - Graham Atherton will present on funding streams for treatment which may change between clinical commissioning groups and specialized commissioning. - Any changes from the patient perspective will be minor, with the main difference being funding approval processes for expensive antifungal drugs.

1. LED BY GRAHAM ATHERTON
SUPPORTED BY
NAC CENTRE MANAGER CHRIS HARRIS
NEW STRUCTURE OF THE NHS AND HOW IT EFFECTS US
JULIA HAMER - DIRECTORATE MANAGER OF RESPIRATORY MEDICINE
NATIONAL ASPERGILLOSIS CENTRE
UHSM
MANCHESTER
Support Meeting for
Aspergillosis Patients & Carers
Fungal Research Trust

2. 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

3. Changes in Commissioning in forChanges in Commissioning in for
the National Aspergillosis Centrethe National Aspergillosis Centre
2013/142013/14

4. NHS EnglandNHS England
 NHS England will play a key role in the Government’sNHS England will play a key role in the Government’s
vision to modernise the health service with the key aimvision to modernise the health service with the key aim
of securing the best possible health outcomes forof securing the best possible health outcomes for
patients by prioritising them in every decision it makes.patients by prioritising them in every decision it makes.
 Formally established as the NHS Commissioning BoardFormally established as the NHS Commissioning Board
on 1 October 2012, NHS England is an independenton 1 October 2012, NHS England is an independent
body at arm’s length to the Government.body at arm’s length to the Government.
 http://www.england.nhs.uk/http://www.england.nhs.uk/

5. Clinical Commissioning GroupsClinical Commissioning Groups
 Clinical Commissioning Groups are responsible for planning and designing local health servicesClinical Commissioning Groups are responsible for planning and designing local health services
in England. They do this by 'commissioning' or buying health and care services including:in England. They do this by 'commissioning' or buying health and care services including:
 Planned hospital carePlanned hospital care
 Urgent and emergency careUrgent and emergency care
 Rehabilitation careRehabilitation care
 Community health servicesCommunity health services
 Mental health and learning disability servicesMental health and learning disability services
 To do this Clinical Commissioning Groups work with patients and health and social care partnersTo 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 ensure services meet local(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 area and at least one registered nurseneeds. CCG boards are made up of GPs from the local area and at least one registered nurse
and one secondary care specialist doctor.and one secondary care specialist doctor.
Clinical Commissioning Groups are responsible for arranging emergency and urgent careClinical Commissioning Groups are responsible for arranging emergency and urgent care
services within their boundaries, and for commissioning services for any unregistered patientsservices within their boundaries, and for commissioning services for any unregistered patients
who live in their area. General Practices have to belong to a Clinical Commissioning Group.who live in their area. General Practices have to belong to a Clinical Commissioning Group.

6. Specialised ServicesSpecialised Services
CommissioningCommissioning
 Specialised services are those provided in relatively fewSpecialised services are those provided in relatively few
hospitals, accessed by comparatively small numbers ofhospitals, accessed by comparatively small numbers of
patients but with catchment populations of more thanpatients but with catchment populations of more than
one million. These services tend to be located inone million. These services tend to be located in
specialist hospital trusts that can recruit staff with thespecialist hospital trusts that can recruit staff with the
appropriate expertise and enable them to develop theirappropriate expertise and enable them to develop their
skills.skills.
 Specialised services account for approximately 10% ofSpecialised services account for approximately 10% of
the total NHS budget, spending circa £11.8 billion perthe total NHS budget, spending circa £11.8 billion per
annum. The commissioning of specialised services is aannum. The commissioning of specialised services is a
prescribed core responsibility of NHS England.prescribed core responsibility of NHS England.

7. Clinical Reference GroupsClinical Reference Groups
 CRGs cover the full range of specialised services andCRGs cover the full range of specialised services and
are responsible for providing NHS England with clinicalare responsible for providing NHS England with clinical
advice regarding these directly commissioned services.advice regarding these directly commissioned services.
The CRGs are made up of clinicians, commissioners,The CRGs are made up of clinicians, commissioners,
Public Health experts and patients and carers, and arePublic Health experts and patients and carers, and are
responsible for the delivery of key ‘products’ such asresponsible for the delivery of key ‘products’ such as
service specifications and commissioning policies, whichservice specifications and commissioning policies, which
enable NHS England to commission services fromenable NHS England to commission services from
specialist providers through the contractingspecialist 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.

8. Funding StreamsFunding Streams
 Initially via CCGInitially via CCG
 May switch to Specially CommissionedMay switch to Specially Commissioned
fundingfunding
 May change later in treatment back toMay change later in treatment back to
CCGCCG

9. Changes from the PatientChanges from the Patient
PerspectivePerspective
 NoneNone
 Only difference may be for funding for theOnly difference may be for funding for the
expensive drugs (Pozaconozole,expensive drugs (Pozaconozole,
Micafungin etc). The processes for futureMicafungin etc). The processes for future
funding these remains unclear still.funding these remains unclear still.

10. Any questions?Any questions?

11. 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)

12. 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.uk
Pass notes to me at clinic or at the meeting
Phone them in (24 hrs) at 0161 291 5866

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

14. 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.

15. 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.

16. 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 exhaustion
heatstroke

17. 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).

18. 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.

19. Heat exhaustion
headaches
dizziness
nausea and vomiting
muscle weakness or cramps
pale skin
a high temperature
If 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.

20. 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.

21. Summary
Educate
Prepare
Prevent
Vigilance – look out for weather warnings
 Much of south of England now at level 3
Keep cool, keep drinking cool drinks

22. 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

23. 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.

24. 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!

25. 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 drug
Skin – very common for topical drugs
Gastrointestinal upset – very common
Unpredictable – Itraconazole and heart failure
Can be serious! Be aware!! Always report to your
doctor if on any drug

26. 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

27. 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.

28. MHRA website

29. 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).

30. 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!

31. 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!

32. 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

33. 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.p
hp
Offline – your pharmacist/doctor

34. Database - Interactions
Drugs.com is good overall
Aspergillus website has a dedicated database for
antifungals that we keep up to date
http://www.aspergillus.org.uk/nac/interactions/patientch
oosegeneric.php*
*also available as an Android and iPhone App under
‘antifungal interactions’
Offline - Pharmacist & doctor

35. Regrown organs

36. Regrown organs - progress
Kidney – complex organ
Has been stripped down & rebuilt using stem cells
(rat) and then re-implanted into host
Works with 5-10% efficiency compared with original
– thought to be sufficient to avoid transplant!

37. 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

38. 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/immun
e.php

39. IgE
Immunoglobulin E (IgE) – an antibody
Also have IgA, IgG, IgM – each plays a different role
IgE main role – defence against parasites!
Normally very low levels
IgE is released as soon as an infection is detected –
the hypersensitivity response. Gets all immune cells
ready for action – allergy!

40. IgE

41. IgE

42. 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.

43. ABPA
Aspergillus permanently irritating sensitive lung
tissue
IgE permanently stimulated
Scarring
We can suppress IgE & histamine production using
steroid drugs
Also seem to be able to do it using antifungal in
many cases
Anti – IgE drugs eg Xolair

44. Flare - up
Suspect some new tiny growth irritating lung ?
Reaction to more moulds in the outside air
Other infections
Other 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

45. Other Ig’s
Indicate infection rather than allergy
Will cover this next month!

46. 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