Monday, March 18, 2013

55 reasons why people with Very Severe ME cannot access health care

Stonebird : the lived experience of Severe ME

55 reasons why people with Very Severe ME cannot access health care.

Greg & Linda Crowhurst 18th March 2013

All the time that ME is treated only as a fatigue illness the health needs
of the very
severely affected, who feel unimaginably ill in every moment, who are not
generally part of research and whose experience is poorly if at all
understood, are massively at risk, for some of the following reasons - this
is not an exhaustive list by any means :

1. It is impossible for the person to travel to a clinic or a hospital.
2. It is extremely difficult to find a knowledgeable GP or consultant .
3. There is little, if any choice of biomedical ME consultants.
4. Knowledge of how to approach or communicate with a person with Very
Severe ME is minimal.
5. The system expects people to fit into it and is not very accommodating
of those who cannot.
6. Hypersensitivity to touch makes physical contact unbearable, dangerous,
impossible without harming the person with Very Severe ME.
7. Hypersensitivity to noise makes it difficult to impossible to bear the
sound of the voice of the GP or consultant, let alone all the background
noise and any other noise exposure.
8. The impact of noise may cause the person to be damaged and physically
harmed for weeks, months, even indefinitely.
9. The impact of chemical sensitivity means the person cannot go into
environments where ordinary cleaning agents, perfumes, chemicals are used.
10. The person with multiple chemical sensitivity cannot bear to be in the
presence of people wearing perfume on their body or clothing. It will harm
them and cause increase in symptoms. They cannot afford to have anyone
visit them and bring their perfume and chemicals into their house, without
dire consequences.
11. Light sensitivity may make it impossible for a person to be in a room
with ordinary light. Exposure to light can be agonising and harmful.
12. It may be impossible for a consultant to examine a patient or write
notes or see instruments in low to dark light, which is the only way a
person with Very Severe ME can be seen; even the noise of a pen on paper
can be too much to bear.
13. Cognitive issues make it difficult for the person to remember what
needs to be said, to access information within their mind .There are blocks
on every level of communication in Severe ME. Communication requires inward
and outward pathways to function properly; these are not there, reliably or
at all, for the person with Very Severe ME.
14. Processing difficulties in the brain make it difficult to impossible to
understand questions or information and to answer adequately or comprehend
meaning. Any mental demand can lead to massive deterioration: instantly.
15. There is not enough energy for the person to explain their history and
symptoms or express their concerns about their health, even if the person
can temporarily access it. The effort of speaking, if the person is able to
speak, is too much and can lead to a post-exertional crisis. The full
reality of a person's disability and illness experience can be missed if
the moment they manage to communicate is considered the norm, when it is in
reality rare to impossible.
16. Extreme pain and physical discomfort make it difficult to concentrate
and deal with complex interactions with other people, especially as the
interaction itself will most likely increase the pain even more.
17. Paralysis makes any interaction impossible, you cannot function when
you are completely paralysed either mentally or physically; you cannot even
speak or open your eyes. Transient awake paralysis can hit any muscles at
any moment.
18. Drug sensitivity and allergy make it risky to even attempt to try and
take new drugs and nutritional medicine, even if needed.
19. Any drug at normal dose is likely to be too high for the person with
Very Severe ME or may not be tolerated at all, even at a lower dose.
20. If regular injections are suggested/required, the treatment may not be
accessible because of skin sensitivity, pressure sensitivity, neurological
and muscle pain, hyperesthesia, the risk of intolerance of the drug, the
inability to cope with another person in the room, the noise and chemical
exposure, the energy required to interact, is unlikely to be there. If the
person is required to be in a different posture, it is likely to be
impossible for them and can endanger their health to try.
21. A blood pressure cuff can be too painful to put on and bear the
increased pressure, as it is pumped up. Harm can be done if this is ignored.
22. Taking blood samples, may be difficult to impossible, in any one
moment, especially if you have to apply a blood pressure cuff and the
person cannot bear it. Increased pain and exacerbation of symptoms as a
consequence may be persistent. Veins may be hard to find or persistently
collapse, causing additional stress and difficulties gaining enough blood.
Pain may be so extreme that the additional pain of a needle puncturing skin
may be too much to tolerate. Extra time and flexibility are always
required, plus a willingness to adapt to the persons physical reality.
23. The weight and pain of a cannula pressing on hypersensitised painful
skin and muscles may be intolerable.
24. Various different postures required may be impossible to achieve for
25. Physical contact itself, required for physical examination, literally
causes deterioration of symptoms and increased pain, spasms, paralysis,
cognitive dysfunction to worsen. There will always be a post- exertional
reaction, which is essential to consider and take into account and can be
extreme and lead to massive deterioration and distress.
26. Providing a urine or stool samples is not the simple act that it is for
ordinary physically functioning people. How is the person to capture the
urine or stool with paralysed or numb hands with poor co - ordination,
spasms, muscle dysfunction. How is the person to understand instructions
with severe cognitive dysfunction similar to Alzheimer's?
27. Any test or treatment involving equipment is likely to be impossible
to manage and potentially harmful from over exertion which leads to
cognitive and physical deterioration and risks the persons ability to
tolerate or cope with any deterioration especially if the impact lasts
months or years. The health of the very severely affected is so frail that
inappropriate intervention can even lead to death.
28. Two way communication may be impossible and even if possible will be
limited complex and potentially harmful, leading to severe post- exertional
impact. It is essential that anyone trying to communicate with a person
with very severe ME understands the way the person communicates, what they
can tolerate and how little energy they have and not ignore or forget the
persons reality.
29. Experimenting with treatment is a very high risk strategy without
knowing if the person will be able to tolerate recommendations and without
understanding possible reactions. Should never be undertaken without due
consideration of risk and possible side affects with careful consideration
of possible impact in advance with a strategy in place to support the
person should they choose to go ahead. People with very severe ME are
desperate for help and so open to mistreatment and defensive blaming by
professionals who simply have not understood the frailty or risk. They are
at massive risk of deterioration and harm being inadvertently or carelessly
done to them; for this reason a proper Risk Assessment should always be
30. There are no NHS medical consultants, that we are aware of, to turn to,
who have the necessary medical knowledge and experience, or who are willing
to travel to the home, in the UK currently – there is little hope of
finding one . So many symptoms of the most severely ill are either ignored
or dismissed and overlooked and not properly understood.
31. The knowledge base required to safely and adequately suggest and
provide tests, treatments, ongoing support, for Very Severe ME with complex
neurological dysfunction is apparently not available within the NHS
currently or if it is, it is inaccessible to the most profoundly disabled
and severely ill patients, with an ME label. It is not adequate to state
ME is a fatigue condition and ignore swathes of symptoms that are
profoundly disturbing, distressing and due to real physical dysfunction,
which would be taken gravely seriously in other illnesses, such as stroke,
heart failure, diabetes, cancer and other more rare genetic and other
diseases. There is an associated confusion with what is co-morbid and what
is ME – there does not seem to be a universal holistic, medical approach to
the complex interaction of symptoms.
32. There is a need for partnership, in working out how to offer medical
support and assistance safely. There is a need for humility and an ability
to admit ignorance, lack of knowledge and to take responsibility for
actions and reactions and wrong treatments and methods, especially a need
to comprehend the very real risks and dangers of deterioration and opposite
reaction to that hoped for or desired, that again we have rarely found.
33. A person with Very Severe ME is unlikely to tolerate or cope well with
the physical demands of invasive treatment, even if required.
34. A person with Very Severe |ME is likely to be extremely drug sensitive
; they require an awareness of anaesthetic sensitivity that is generally
not provided by professionals. The person and/or their carer is more often
put in the situation of having to guess what is safe, as professionals are
themselves seem unaware. How can they be given safe advice when their
symptoms are not adequately investigated or properly medically explained,
in the first place ?
35. People with Very Severe ME just cannot access everything required to
negotiate with doctors surgery and hospital settings, treatments, follow up
appointments, Physiotherapy, OT, medical assessments, operations etc. They
are at grave risk of harm because of the dearth of aware medical
consultants to back them up and make safe recommendations.
36. People who live away from direct contact with public places and people
due to profound hypersensitivity and fragility are extremely vulnerable to
exposure to infections and less able to fight them off, risking increased
deterioration of health if they catch anything.
37. Because of the confusion and collusion with the psychiatric lobby and
the wrongful focus purely on fatigue, it is extremely difficult to know who
it is safe to trust and who will not harm you. Harm can be done through
lack of understanding or misdirected interpretation of illness and lack of
understanding of how to help the most severely affected, whose physical
experience is so much more extreme and complex than those mildly affected,
whom professionals are more likely to have encountered if at all.
38. Extremely physically ill hypersensitive people with severe multi-
system dysfunction who have little tolerance for face to face interactions
are easy to misinterpret.
39. Extremely physically ill hypersensitive people with severe multi-
system dysfunction who have little tolerance for face to face interactions
are easy to misrepresent in a health service determined to focus on a
psychosocial interpretation. The current NHS pathway is woefully inaccurate
and inadequate.
40. Extremely physically ill hypersensitive people with severe multi-
system dysfunction who have little tolerance for face to face interactions
are easy to misunderstand.
41. Extremely physically ill hypersensitive people with severe multi-
system dysfunction who have little tolerance for face to face interactions
are easy to mistreat.
42. Extremely physically ill hypersensitive people with severe multi-
system dysfunction who have little tolerance for face to face interactions,
are easy to have wrong and inaccurate reports written about them,
expressing opinions as fact; wrong opinion based on lack of knowledge –
this can do much harm.
43. There is not enough accurate, adequate explanation or study of
individual's symptoms to help identify them accurately, or protect people .
44. Private tests and treatments are often too expensive to conduct.
45. Private consultants are often too expensive to pay for home visits,
even if willing.
46. The person with Very Severe ME is physically profoundly ill and often
cannot undertake the risk of trying to get help, from an unknown
consultant or doctor, when any interaction and effort leads to profound
consequences of health deterioration, temporary or permanent or very long
47. Hospitals, outpatient departments and doctors surgeries are not
generally geared up to accommodate multiple chemical sensitivities, noise
sensitivity, light sensitivity, need for bed rest etc. Being exposed to the
major physical trauma of travel and then being exposed to so many people,
interactions and so many sources of noise and chemicals and infections will
be too much for the person with Very Severe ME.
48. Sitting and standing or tilting will be extremely difficult to
impossible for the person with very Severe ME and could endanger their
health or be intolerable and harmful to attempt.
49. Even lying down may be extremely uncomfortable and painful, even if
this is necessary or unavoidable.
50. Even tolerating a wheelchair may be too physically uncomfortable and
complicated for the person to use, despite the apparent need. There are
complex symptoms affecting multiple systems, resulting in difficulties
with motion, reversal of direction, vibration, noise, posture, speed and
pain, dizziness, visual disturbance.
51. Travel is a nightmare for the person with Very Severe ME. Motion,
bumps, noise, vibration, smell of chemical and upholstery, petrol, perfume
, exposure to light, are intolerably difficult to bear. Sitting up may be
unachievable. Travel lying down may be impossible and impractical. It may
be impossible and dangerous to attempt. There will always be a profound
post- exertional reaction. Toilet stops will be complicated , on many
levels or impossible to deal with.
52. Some people are so pressure touch sensitive, so hypersensitive and in
pain that they cannot tolerate any noise protection, such as ear phones or
ear defenders or ear plugs. Physical contact can literally harm them. They
have no choice but to remain in a protected environment, with noise
reducing curtains and triple sound proof glazing, sound proofed walls and
doors etc. It is extremely difficult and challenging to reach out to such
sensitive people, whose reality is virtually unimaginable.
53. Pills and capsules are often not made of easily digestible
materials,such as gelatine. Medicines may have ingredients that are not
tolerated and can exacerbate food sensitivities and gastric issues, which
are already severe to extreme in this extremely ill group of people. The
NHS does not appear to accommodate this issue well.
54. Even with the best intention, medically knowledgeable consultants and
safe pathways, are simply not there currently, nor have they been, in our
experience of over two decades of seeking them within the national health
service in the UK.
55. This is an illness that is extremely difficult to comprehend from the
outside. With such complex cognitive dysfunction and blocks upon every
level of communication, it is extremely hard to explain and articulate and
identify the profound level of dysfunction from the inside. Reactions are
often confusing and opposite to what would normally be expected to occur,
so confounding the help that should be available but cannot sadly be
accessed, rendering the people most in need, invisible and living secret
tormented lives.

Greg Crowhurst
(The Lived Experience of Severe ME)

*"Care for Someone with Severe Myalgic Encephalomyelitis"* is now available
in paperback or as an eBook :

No comments: