Approved Provider Scheme for ME/CFS clinics? Suggestion for discussion

[bobbler]

Moved from the thread on the government consultation on ME/CFS

I've just come across the following from Headway (brain charity):https://www.headway.org.uk/about-brain-injury/professionals/approved-provider-scheme/

Headway has developed the Approved Provider scheme, an accreditation scheme open to residential care settings. This includes NHS and independent hospitals, neuro-rehabilitation units, residential and nursing homes and respite facilities, specialising in acquired brain injury (ABI).

The scheme utilises standards developed to reflect the specific needs of people with ABI, using these to evaluate a range of facilities including hospitals and neuro-rehabilitation units, residential and nursing homes and respite facilities.

The process involves units signing off a statement of compliance against each required standard and undergoing a robust on-site assessment, within an inspection system that also involves unannounced interim reviews.

This process ensures that units gaining Approved Provider status can demonstrate their provision of appropriate specialist care for those with complex, physical and/or cognitive impairment due to acquired brain injury. Key aspects of the process include ensuring staff working in the unit are aware of and responsive to issues associated with ABI, and that the unit gives consideration to the information and other needs of the service user, their family and carers.

It got me thinking regarding perhaps one strand of how to tackle the conundrum of people making their various fortunes 'in the name of' whilst the desperate essential needs of those wih ME/CFS are ignored. As well as of course the issues for those who end up seriously unwell and currently I don't think we have a network that could even advise someone where to turn at the various levels of the systems to find safety etc.

I haven't set this up as a separate thread but I think the general concept and the how and who (and wha might also need to go alongside it) is perhaps worthy of it.

At this point perhaps having charities - be they ones that exist [in this form] yet or not - actually taking on assessing whether anywhere is indeed good enough and being blunt in that way as to whether somewhere meets basics might perhaps need to be the interim whilst we have a lot of 'do what they wants but expect to get funding in the name ofs' etc?

 

[Hutan]

I like this idea a lot. I think it is relevant to not just the UK, but wherever there are ME/CFS/LC services.

In my career, I had some involvement with organisation certification schemes. They made a difference to the quality of the organisations and also helped consumers identify which organisations were worth buying from. I reckon a quality assessment of clinics done by a patient charity could be really helpful. As well as highlighting problems, it would recognise clinics that are doing the right thing. I think it would be a very interesting exercise to develop the assessment.

It seems to me that health services in general desperately need the impetus for improvement that certification promotes. Maybe there is some quality management certification of health services already, but I doubt there is much that incorporates the consumer perspective. I'm interested to hear from people who have worked in health services what they think of the idea and how much external assessment already happens.

 

[Trish]

My concern in the UK is that none of the charities have the resources to inspect all the clinics, though Charles Shepherd is doing a great job writing to them about their published material being out of date and wrong.
I suspect we'd end up with BACME as a self appointed accrediting body, and we know they're still getting it wrong both on causes of ME and treatments, confusing pacing and pacing-up.

 

[NelliePledge]

One way of doing it could be for the charities to approach other schemes such as the one in the first post to collaborate on an inspection regime. it seems to me if someone can be trained to inspect against brain injury care standards they could also be trained in care standards for severe ME.