Now is the Time : Stonebird Response
These are the comments we have added to the Now is the Time document :
Stonebird’s response :
Q2. Which healthcare services should be our priorities for introducing choice of any willing provider?
Myalgic Encephalomyelitis should be a primary concern, It needs to be honestly separated from Chronic Fatigue Syndrome services, which are primarily mental health services, offering inappropriate and dangerous interventions for people with the neurological disease, ME.
People with ME should not be treated at CFS clinics; there should be no pretence that a CFS service is a service for people with ME.
For there to be any choice at all, new biomedical services need to be created for people with ME and the truth that ME is a neurological disease with physiological dysfunction needs to be disseminated throughout the NHS.
Q4. What would help more people to have more choice over where they are referred?
A system with integrity, one that actually offers appropriate biomedical choices and accurate diagnostic criteria, for ME, that honours the physical disease dysfunction.
There must be the option for very severely affected patients to have home, domiciliary Consultant visits, right from the beginning as people cannot travel any distance or at all, when they are severely affected by ME.
This should not be something that people have to fight and argue with PCTs about.
Q7. When people are referred for healthcare, there are a number of stages when they might be offered a choice of where they want to go to have their diagnostic tests, measurements or samples taken. At the following stages, and provided it is clinically appropriate, should
people be given a choice about where to go to have their tests or their measurements and samples taken:
· At their initial appointment - for example, with a GP, dentist,
optometrist or practice nurse?
· Following an outpatient appointment with a hospital
· Whilst in hospital receiving treatment?
· After being discharged from hospital but whilst still under the care of a hospital consultant?
There is currently no provision on the NHS to do the tests and physical assessments required to show-up the dysfunction the dysfunction prevalent in ME, so there is no choice currently, for patients with neurological ME to be properly diagnosed, treated or helped in any real way.
Until the NHS offers a biomedical service and does appropriate scans, such as SPECT and PECT and tests such as mitochondrial function, pesticide tests, etc, there will be no possibility of choice available on the NHS, for people with ME. This must be addressed.
Q9. Would you like the opportunity to choose your healthcare provider and named consultant-led team after you have been diagnosed with an illness or other condition?
Yes. Too many Consultants are unaware of ME being a physical disease. It's very important that patients can choose Consultants who are aware, however, until the NHS addresses honestly the need for biomedical clinicians/ tests/ treatments/ responses and creates opportunities for new biomedical Consultancy posts, there will be no choice available.
Q10. What information and/or support would help you to make your choice in this situation and are
there any barriers or obstacles that would need to be overcome to make this happen?
There are enormous barriers and obstacles for people with ME to overcome to get appropriate medical hep for their disease; it is simply not available currently on the NHS, because the NHS has chosen to treat ME as a mental health issue and is not offering a biomedical service anywhere.
This is shocking and woefully inadequate.
Q12. What else needs to happen so that personalised care planning can best help people living with
long term conditions have more choice and control over their healthcare?
For people with ME, a complete change of direction is required. For example nutritional medicine does help the body because there are massive depletions of minerals , antioxidants, vitamins etc. which the NHS currently refuses to fund.
There is a very real difference, for example, between someone taking L-Glutathione as a supplement and someone requiring a therapeutic daily dose to survive.
There needs to be a new response to the complex needs of people with ME and greater understanding of their physical needs with new options for treatment and health support being offered.
The psychosocial approach for people with ME needs to be acknowledged to be inappropriate and stop being offered. People need to be treated with the respect of having a physical disease.
Psychiatric domination and its influence over the inappropriate NICE guidelines , needs to be completely expelled from ME. Until this happens there will no choice at all.
Q16. What sort of choices would you like to see about the NHS treatment that you have?
I would like the recommendations made by my Consultant to be respected and funded by the NHS, especially as they are not particularly expensive.
I would like clearer pathways of communication to be available when my health deteriorates, with a consultant who understands how frail my health is and how vulnerable I am to drug interventions – or any intervention.
I need the NHS to ensure that everybody working in the NHS knows that my ME is WHO-classified Neurological disease and I am at great risk of misunderstanding and mistreatment if this is disregarded.
I would like greater cooperation & communication between departments, to ensure that any treatment I receive is safe.
I should not have to be exposed to ignorance concerning my disease, that means I have to say personally that I am physically ill and drug-sensitive. This should be known and practitioners should be trained to know how to work with me safely, to make sure my health does not deteriorate, because they do not understand the impact they are having or the dangers their interventions might pose to me Again this is shockingly inadequate .
Q18. How do we make sure that everyone can have a say in their healthcare?
You can actually listen to them and instigate consultations that are genuine partnership, whereby patient input is responded to, rather than the lip service paid that, in our experience, passes as consultation
There should be honest responses to people and workers should be held accountable for wrong judgement, ignoring patient input and dismissing ME as a psychological condition as opposed to a genuine physical disease.
Q23. Should healthcare professionals support the choices their patients make, even if they disagree with them?
In the case of ME there are very few healthcare professionals who know enough about ME to make any decisions or judgements about the health needs of patients. As the NHS has not adopted a fair criteria to determine who has ME, all patients with ME are currently at risk of mistreatment, misinterpretation and being wrongly classified as having a mental health condition.
You cannot fairly ask this question of patients with ME, all the time the NHS does not respect ME as a neurological disease in the services it offers.
Q41. Do you agree with proposed approach to establishing a provider’s fitness to provide NHS services? What other criteria would you suggest?
Clearly there is not enough understanding or acknowledgement in the NHS of ME as a neurological disease, to safely provide any service. This is clear from the services you are currently offering.
Any provider that offers a psychosocial service for ME, is not a fit provider : which is the current situation.
Q43. Do you agree that an “any willing provider” directory should be established to make it easier for commissioners to identify providers that are licensed and have agreed to the NHS standard contract terms and conditions?
Until the NHS addresses the fundamental principles on which it offers services for ME, this question is not really relevant, because any service is most likely to be psychosocial , because that is the prevailing wrong attitude to ME, all the time it is confused with CFS.
Q45. How can we make sure that any limits on choice are fair, and do not have an unequal effect on some groups or communities?
There is no choice currently; you could not limit the choice any more than it already is for ME. Where else in the Health Service do you have a physical disease whose physical dysfunction is ignored and the only service offered s therapeutic rehabilitation without treating the disease process ? This is a travesty of choice .
Q48. How far should we extend entitlements to choice in legislation and hold organisations to account against these?
Totally. Patients with ME should be entitled to compensation for medical neglect and lack of biomedical choice.
Q52. Are the responsibilities of organisations as outlined enough to:
· ensure that choices are offered to all patients and service users where choices are
safe, appropriate and affordable?
· ensure that no-one is disadvantaged by the way choice is offered or by the choices
they make ?
In our experience the NHS has refused to pay for affordable options, while offering vastly more expensive, dangerous, psychiatric options.
Q53. If you do not get a choice that you are entitled to, what should you be able to do about it?
You should be compensated.