Chronic illness health psychologist Alison Wearden talks about how stress effects our health and our recovery from illness, and specialist physiotherapist Phil Langridge talks about breathlessness and what we can do to control it. Graham Atherton discusses gardening for those with allergies, the signs of heart disorder to be aware of if you are taking itraconazole and advice on travel.

1. LED BY GRAHAM ATHERTON
SUPPORTED BY
NAC CENTRE MANAGER CHRIS HARRIS
GEORGINA POWELL, DEBBIE KENNEDY & DEB HAWKER
HEALTH PSYCHOLOGY: ALISON WEARDEN
NATIONAL ASPERGILLOSIS CENTRE
UHSM
MANCHESTER
Support Meeting for
Aspergillosis Patients & Carers
Fungal Research Trust

2. Programme
 1.30 Phil Langridge - Breathlessness
 1.50 Alison Wearden – Health Psychology & Chronic Illness
 2.15 Carers Discussion (Break)
 2.30 Patients Discussion (Break)
 2.45 Group discussion/Requests for information
 Itraconazole toxicity – risk of heart problems
 Low – allergy gardening (Book now available)
 Artificial organs – kidney
 Food for patients meeting?
 Damp homes – do you see damp/moulds?
 Travel
 Patients survey
 3.15 Q & A from the floor or online

3. MANAGING BREATHLESSNESS
Phil Langridge
17th
May 2013

4. What is breathlessness?
• “difficulty breathing or altered sensation of breathing”
• “air hunger”
• “laboured respiration”
• Medical tems
– Dyspnoea
– SOB
– Tachypnoea
– Orthopnoea
– Apnoea
– Etc.
• “ A subjective experience of breathing discomfort that consists of
qualitively distinct sensations that vary in intensity” (ATS consensus
1999)

5. What do people say when they are
breathless?
• My breath does not go in all the way
• My breathing requires effort
• I feel that I am smothered
• I feel like I need more air
• My breathing is heavy
• I cannot take a deep breath
• I feel out of breath
• My chest feels tight
• My breathing requires more work
• I feel like I am suffocating
• I feel that my breath stops
• I am gasping for breath
• My chest is constricted
• I feel like my breathing is rapid
• My breathing is shallow
• I feel I am breathing more
• I cannot get enough air
• My breath doesn’t go out all the way
• My breathing requires more concentration

6. How is breathing controlled?
Peripheral
chemoreceptors
Proprioceptors
Voluntary
Control
Limbic system
Central
Chemoreceptors
Respiratory
Centre

7. Is breathlessness bad for you?

8. Measuring breathlessness
• MRC
• Borg
• Diary
• Questionnaires (SGRQ/CRQ)

9. MRC score- which one do we use in clinic?

10. BORG SCALE

11. What can be done about
breathlessness?• Change activity
– Stop / do it slower/ break task into smaller bits
• Change/ use medication
• Oxygen therapy (?)
• Breathe differently
– Which muscles you use / timing
• Change environment
– Fans, cold drinks, hot drinks, open the window, go outside, go inside etc
• Exercise
• (Acceptance)

12. When do I get asked to be involved
PHYSIO

13. Does breathlessness management work?

14. Positions to ease breathing

15. When out and about

16. Breathing control – ideally where to
breathe from

17. Timing Top Tip

18. To manage breathlessness on
exertion
• Don’t hold breath
• Don’t rush to get it over with
• Remember to breathe out!
• Exhale on strain
• Pacing
• “blow as you go!”

19. Final thoughts
• Breathlessness can be frightening
• There are things medicine can do
• There are things you can do
• Breathlessness is part of everyday life, even
for those without lung disease

20. Psychological research on
aspergillosis?
I searched all the major health psychology journals
for the past 20 years
Not one paper on aspergillosis!
What do patients and carers say?

21. Some of the issues...
Time to diagnosis – rare disease, some ignorance
Symptoms – fatigue, nausea, sleep problems,
weakness
Variability in illness course
Coping with more than one condition – e.g. asthma
Medication regime can be demanding
Limitations on activities
Emotional problems
Impact on family and carers
Life changing – sometimes for the better!
Some inspirational stories.

22. Learning from other conditions
Some general ideas

23. Thoughts
about illness
(cognitions)
Feelings about
illness
(emotions)
What is done
(behaviour)
to manage the illness
to manage emotions
Behaviour and emotions
can affect the physical
processes of illness

24. Heart attack was caused by
stress, my heart condition
is uncontrollable and life
threatening
I can help to prevent
another heart attack by
losing weight and
exercising
Stressed and a bit hopeless
Stressed but optimistic
There’s no point going to rehab
I had better be careful and avoid stress
If I get fitter and lose some weight my
health will improve and I may be able
to get back to work in a month or two
An intervention to help people to feel that
they did have some degree of control over
their future heart health resulted in a
quicker return to work and less angina
pain when compared “usual care.”
(Petrie et al., 2002)
Two people
(A and B) have a
heart attack

25. There are many long–term health conditions and
each poses its own challenges
However, from a psychologist’s point of view, there
are features in common
One common thread is that there is often only a weak
relationship between disease severity and experience
of illness.
Sometimes people look as if they are “better” on the
tests but still feel quite ill

26. Initial illness
or infection
Delayed diagnosis?
Loss of fitness
Sleep disturbance
HPA axis dysregulation
Social/emotional
consequences
Experience symptoms
activity is tiring
muscles ache
feel dizzy, sick
Stressed about the symptoms
Focusing on symptoms
Worrying about the symptoms
A general
model
a vicious spiral
Takes a long time to feel better
Disrupted activities
Try to keep
going
STRESS!!

27. Fatigue in multiple sclerosis (MS)
Fatigue is a very common and disabling problem in
multiple sclerosis
Skerrett & Moss-Morris (2006) gave some people with
MS questionnaire measures of what they thought
about and what they did about their symptoms
“Symptom load” (All these symptoms are due to my
MS)
“Embarrassment” (I am embarrassed to go out)
“Activity limitation” (I had better not do anything in
case it makes my fatigue worse)

28. They measured fatigue and social adjustment
They had several measures of the severity of the MS
including a neurologist’s opinion
They found that, even taking into account the severity
of the MS symptoms, people who felt more
embarrassed and who were limiting their activities
were more fatigued

29. In a subsequent study, these authors developed an
treatment programme to improve MS fatigue
There were 8 sessions. Some of these were:
Understanding your symptoms
Thinking more positively
Dealing with stress
Goal setting
Sleep management

30. Patients who received this treatment package showed
larger improvements in fatigue than those in a control
group who practised relaxation only
(Van Kessel et al., 2008)
Other conditions in which psychologists have helped
to improve patients’ symptoms include rheumatoid
arthritis and psoriasis

31. Initial illness
or infection
Delayed diagnosis?
Loss of fitness
Sleep disturbance
HPA axis dysregulation
Social/emotional
consequences
Experience symptoms
activity is tiring
muscles ache
feel dizzy, sick
Reduced/disrupted activity levels
Stressed about the symptoms
Focusing on symptoms
Worrying about the symptoms
A general
model
Takes a long time to feel better
Try to keep
going
PHYSICAL
SYMPTOMS
OF STRESS

32. Health psychologists have studied
how stress can
Make us more prone to
infection
Make pain worse
Impact on
cardiovascular health
Affect wound healing

33. Two key studies on stress and
wound healing
The first one looked at the stress of caring for a person
with Alzheimer’s disease
Used experimentally inflicted small wounds
These allowed researchers to carefully describe
healing times in people under different conditions of
stress
Typical technique involved the infliction of a punch
biopsy wound
MAB13-8

34. Punch biopsy

35. 13 caregivers of Alzheimer’s Disease patients
13 healthy people, same age – not carers
Punch biopsy wound, 3.5mm, full skin depth
Photographed every few days until the wound healed
Wound size measured every few days

36. Both graphs taken from Kiecolt-Glaser et al., 1995, Lancet, 346,4: 1194-6.

37. Some other researchers persuaded 11 dental students to
be wounded twice, once during the summer vacation and
6 weeks later during exams
From Marucha et al (1998),
Psychosomatic Medicine 60:362-365

38. These two studies show that stress can slow down
wound healing
Other conditions where stress has been shown to
have a role in either the progression of the disease or
recovery are HIV/AIDS and heart disease.
As well as a direct effect on the body, stress can have a
big effect on people’s ability to manage their
condition.

39. The challenges of aspergillosis
Can health psychologists help?
You can tell me!
Symptom management
Managing medications
Looking after the health of carers

40. Thank you for listening

43. Carers group
Most of us are carers for a short time – not many
volunteer or even know it is coming
Look after your own health
Have your own life too – don’t let it be ‘taken over’
Hobbies
Educate yourself about the illness that the person
you care for has – improves understanding

44. Carers

45. Patients group
Saline nebulisers and their effectiveness
Media portraying aspergillosis as easy to cure
What is important to you isn’t always obvious to
your carer
When you are ill patience is inevitably shortened!

46. Whole group
At the end of the day it is important to spend time
together , finding things you can still both do –
whether you are a couple, child/parent or even just
friends
Gardening tips – reference book
Topics?
Questions?

47. Low Allergen Gardening
Allergy-free Gardening: A Revolutionary Approach to
Landscape Planning by Thomas L. Ogren (1 Mar 2000)
£82.43 new, £30.00 used

48. Contents

49. Low Allergen Gardening
Each plant rated on a scale of tolerability
Low allergen alternative suggested for each high
allergen plant
We have 2 copies you can consult & borrow.

50. Travel
Clear trip with your doctor first!
Organise carrying oxygen with your airline in advance -
some will support you better than others!
Travel insurance (Staysure, Unique (asthmaUK),
http://www.moneysupermarket.com/travel-insurance/pre-
existing-medical-conditions/)
Please give full info about ALL your medical conditions on
your proposal. If you give only partial truth and need to
claim, your whole policy might be made invalid and you
won't get anything.
http://www.aspergillus.org.uk/newpatients/travel.html

51. Insurance

52. Travel – transporting drugs
There are a variety of bags marketed that can
maintain cool temperatures for up to 24 hours –
search for bags used by diabetics
http://www.diabetes.co.uk/diabetic-
products/medifridge.html

53. Q & A
Questions?
Areas of interest online
Mouldy homes – new guidelines – see Asp Website
Itraconazole toxicity – risk of heart problems
Low – allergy gardening (books purchased)
Artificial organs – kidney
Food for patients meeting?
Damp homes – do you see damp/moulds?
Travel

54. Itraconazole and Heart Failure
Patients NEW to itraconazole should be aware of the
possibility of heart problems
Patietns who have been taking itraconazole for over
6 – 12 months with no problems should not develop
problems in future
ALL should be watchful for signs such as:

55. Itraconazole and Heart Failure
The symptoms of heart failure can vary from
person to person. The main symptoms are
breathlessness, extreme tiredness, and ankle
swelling, which may extend up the legs.
These symptoms may be caused by conditions other
than heart failure, and sometimes there may be more
than one cause for them.
http://www.nhs.uk/Conditions/Heart-
failure/Pages/Symptoms.aspx
If in any doubt see your doctor

56. Regrown organs

57. 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!

58. Food for Meeting
Can’t transfer funds to research
Funds come out of NAC/NHS ‘hospitality’ funds
Could do less – tea & biscuits?

59. Patients Survey
Taken in February each year
Assessment of satisfaction of all aspects of our
service
140 answered questionnaires
 Questions about Patient information
 Questions about this meeting

60. Patients Survey

61. Patients Survey

62. Patients Survey

63. Patients Survey
Of those that answered no,
32% of them do not have a
computer or use the
internet.
Anything we can do to
improve this?

64. Patients Survey

65. Patients Survey
Can we fix this in
any way?

66. Patients Survey
Can we improve this?

67. Patients Survey
Can we improve this?

68. 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