Thirty Questions you can ask the Government
Dear Norman Lamb,
1. Please can you explain to us why Myalgic Encephalomyelitis is still not treated in the UK as a neurological disease?
2. Why there is no biomedical treatment pathway on the NHS for people with Myalgic Encephalomyelitis?
3. Why there is no accurate training programme within the NHS to make sure that all professionals from paramedics, through to nurses, orderlies and to doctors and consultants have an accurate medical picture of the disease and know how to provide safe treatment and procedures to people with ME?
4. Why is there no hospital or GP provision for the safe passage of people with ME who suffer from noise, light, chemical sensitivity and need separate waiting areas and room to lie down and require longer amounts of time for procedures and investigations and appointments due to the nature of their illness and disability ?
5. Why there is no system of reaching the house and bed bound and treating the most severely affected at home?
6. Why are there no biomedical protocols to ensure that every hospital or GP setting knows what to do and how to treat a person with ME?
7. Why are the most serious and severe symptoms simply ignored by the NHS?
8. Why is it that the information on the NHS website says that ME can be caused by psychological factors ?This is a neurological disease.
9. Why are patients not being adequately tested on the NHS to ensure that they actually have ME not chronic Lyme disease or other testable but neglected illnesses?
10. Why is it acceptable to continue to use the inappropriate umbrella term “CFS” which provides no one with ME a suitable medical service , understanding or adequate investigation of their symptoms and continues to allow inappropriate biopsychosocial pathways to prevail instead of proper medical respect and treatment?
11. Why is there no acute hospital ward for the most severely affected?
12. Why are there no emergency advice lines specifically for ME?
13. Why are GP's and hospitals and consultants allowed to choose whether they treat ME as psychiatric rather than medical illness?
14. Why are the most severely affected so shut off from accessing NHS hospital outpatient or inpatient services, they are effectively left at home without adequate medical support reliant on the understanding of GP's without adequate health care monitoring or in depth understanding of the physiology of their illness?
15. Why is psychiatry allowed to interfere, control, influence the care and ( lack of ) treatment of people with ME at all?
16. Why will the government not make a stand to protect people who currently have the inadequate diagnosis of CFS, ensuring that they are properly investigated, treated and separated from mental health treatment protocols which deny or downplay their physical illness?
17. Why are vested interests allowed to dominate ME today, leaving patients without adequate medical respect, proper recognition or understanding of their illness?
18. Why are the most severely affected left at risk of misinterpretation and psychiatric abuse still, despite the death from ME of Sophia Mirza ?
19. Why is there not a specialist team of highly medically trained specialists available to investigate and treat safely at home, the most ill, understanding the dangers of moving them from a safe environment, without risk of harm?
20. Why are all the biomedical research papers which point to numerous physiological dysfunction simply ignored by the NHS and not included in treatment protocols or testing?
21. Why is it acceptable and accepted by the government to place on indefinite hold the inappropriate and dangerous NICE guidelines, which were not deemed for for purpose since they were first published by the majority of charities and patient groups.
22. Why is there no standard of care training for carers involved with people needing help at home which have ME?
23. How is the government going to ensure with its new care standards that the correct medical information is given to carers concerning Myalgic Encephalomyelitis as opposed to chronic fatigue, to ensure appropriate needs are met? ME is not like any other illness in that anything can have a potentially deteriorative impact. The level of carer training needs to be extremely high to safe guard the most severely affected.
24. While the NHS wrongly continues to push a psychosocial agenda onto patients with ME, what hope is there that there will be any safe consistency of carer training that actually recognises ME as a neurological disease with acute hypersensitivity to environment and post- exertional responses,needing highly sensitive and understanding staff to avoid risk of more deterioration?
25. Why is there is no current consistency of information ? The NHS pathway is unsafe and the description of ME, incorporated into CFS factually inaccurate.
26. Why will the NHS and the government not adopt safe criteria ? Currently the ICC is best, because it proactively recommends safe separation of ME from CFS and more accurately identifies the most severely affected.
27. Why is there a false pretence that people with ME will get better with no medical input.
28. Why will the government not stand behind patients to stop the negation and neglect of ME,by creating a new , medically separated pathway with no inappropriate collusion or involvement with psychiatry?
29. Will the government make a commitment to stop the abuse and neglect, the misinterpretation and misrepresentation of ME as psychological, and the mistreatment , particularly of the most seriously ill patients?
30. Can you explain Norman Lamb why,under your watch, the NHS is treating ME as Bodily Distress Syndrome and offering a flagrantly dangerous pathway to people denying their physical illness in the name of “love”, in Barnet? http://www.kingsfund.org.uk/sites/files/kf/esther-gathogo-charlotte-benjamin-pilot-enhanced-gp-management-medically-unexplained-sympthoms-kingsfund-may12.pdf
Now post to Norman Lamb :