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AfME: New report: specialist NHS services for M.E. in the UK

Reporting, not recommending.
New report: specialist NHS services for M.E. in the UK
July 25, 2017

A new report by Action for M.E. into specialist services has confirmed that vast numbers of people with M.E. do not have any specialist services in their local area.

The report, titled ‘Spotlight on specialist services: UK healthcare for people with M.E.’, also highlights that many services lack the capacity to make home visits, which restricts access to specialist services for the severely affected.

Furthermore, the report shows that:

  • less than a third of health commissioning boards across the UK confirmed they have any data on how many people in their locality have M.E., leaving service commissioners unable to identify the scale of need for specialist services
  • less than half of UK commissioning boards refer people with M.E. onto other secondary services; those that do named 25 different examples, suggesting uncertainty about treatment and care pathways, and patients potentially being routed to inappropriate care.
You can view the data shared by your local Clinical Commissioning Group (CCG), Health Board or Health and Social Care Trust via our interactive maps showing:

Our findings are based on a Freedom of Information request we sent to CCGs, Health Boards and Health and Social Care Trusts in England, Wales, Scotland and Northern Ireland, requesting the data each held on M.E. prevalence, specialist health services, and secondary care referrals.

Based on these findings, Action for M.E. will take action to address the ignorance, injustice and neglect experienced by patients with M.E. We will:

  • work with policy-makers and NHS organisations to develop and implement a method to collect data on M.E. prevalence and clinical pathways
  • work with health professionals, other M.E. organisations and people affected by M.E. to explore how we can develop a national blueprint for appropriate, patient-led specialist M.E. services that meet the needs of people with M.E.
If you are interested in working with us to take this forward, please contact our Policy Officer, Katie McMahon.
https://www.actionforme.org.uk/news...st-services-uk-healthcare-for-people-with-me/
 

Invisible Woman

Senior Member
Messages
1,267
To be honest I have very mixed feelings about this - I am severely affected and given the current offerings I would rather be left alone to cope as best I can.

Naturally, I understand that there are others who need medical support for day to day living. I'm just not sure that this is likely to bring them closer to getting the right support just now.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
It says:
  • work with policy-makers and NHS organisations to develop and implement a method to collect data on M.E. prevalence and clinical pathways
  • work with health professionals, other M.E. organisations and people affected by M.E. to explore how we can develop a national blueprint for appropriate, patient-led specialist M.E. services that meet the needs of people with M.E.


ME prevalence is known well enough for this purpose. There is no way to be precise about it so a repeat would be a waste of time.
There are no clinical pathways for which we have an evidence base of efficacy so why bother to collect data on them? Clinical pathways are for people who cannot think. If you can think you do what you think is most likely to be best in the circumstances.
How do you develop a national blueprint for what is appropriate without evidence?
What are patient-led services?

I am afraid this sounds like empty burospeak.
Except the last sentence, which is fair enough!
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
There are no clinical pathways for which we have an evidence base of efficacy so why bother to collect data on them?
Agreed.

Clinical pathways are for people who cannot think. If you can think you do what you think is most likely to be best in the circumstances.
Everyone working in health care professions can think. Some can think better than others, maybe because of intrinsic intelligence or because they have had enough sleep or because they aren't distracted by a personal crisis. Some have more time than others; some have more experience than others; some have kept up to date with the latest medical advances better than others; some have more curiosity and compassion than others and so make the time to think.

Clinical pathways, standard operating procedures, whatever they are called, do have a use. Done well, they consolidate what is known into procedures that are a very good start to ensuring a patient gets good care. Of course, they are particularly important for staff who don't have a lot of training or experience in the condition they are faced with. But studies have found that even experienced teams can improve the care they provide by using standardised checklists and procedures (obviously with the ability to consciously deviate from them when needed).

They are a way of communicating the combined wisdom of the medical profession so that patients don't have to suffer while each staff member moves through a learning curve for each medical condition.

  • work with health professionals, other M.E. organisations and people affected by M.E. to explore how we can develop a national blueprint for appropriate, patient-led specialist M.E. services that meet the needs of people with M.E.
How do you develop a national blueprint for what is appropriate without evidence?

I can imagine a national blueprint for the care of people suspected to have ME based on what is known right now that would be very useful. I expect you can too.

It would include things like
  • comprehensive screening for other illnesses at diagnosis;
  • liaison with schools, employers and social welfare;
  • providing validation and compassion;
  • provision of information on management (e.g. pacing, not GET)
  • treatment of symptoms like orthostatic intolerance;
  • management of the severely ill (e.g. home visits; feeding tubes; requirements for dark and quiet when in hospital).
  • links to useful documents like the paediatric primer by Rowe et al.
Whether Action for ME are the people to drive such a national blueprint is another question. But useful things could be done to improve care and change attitudes, even though there are currently no effective treatments.

Even just the process of trying to create such a national blueprint could be useful.
 
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