Health services research Equity of access to specialist ME/CFS services in England

Published full paper: BMJ Open, 16 August 2012: http://bmjopen.bmj.com/content/2/4/e001417.full.pdf html?sid=77427d96-9e24-4fe1-bc77-e43f200fef96

Equity of access to specialist chronic fatigue syndrome (CFS/ME) services in England (2008–2010): a national survey and cross-sectional study



Simon M Collin(1,2), Jonathan A C Sterne (1), William Hollingworth(1), Margaret T May (1), Esther Crawley(1,2)

(1) School of Social and Community Medicine, University of Bristol, Bristol, UK
(2) Centre for Child and Adolescent Health, University of Bristol, Bristol, UK

Abstract

OBJECTIVES

Provision of National Health Service (NHS) specialist chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) services in England has been deemed patchy and inconsistent. Our objective was to explore variation in the provision of NHS specialist CFS/ME services and to investigate whether access is related to measures of deprivation and inequality.

DESIGN

Survey of all CFS/ME clinical teams in England, plus cross-sectional data from a subset of teams.

SETTING

Secondary care.

OUTCOME MEASURES

We used clinic activity data from CFS/ME clinical teams in England to describe provision of specialist CFS/ME services (referral, assessment and diagnosis rates per 1000 adults per year) during 2008–2011 according to Primary Care Trust (PCT) population estimates, and to investigate whether use of services was related to PCT-level measures of deprivation and inequality. We used postcode data from seven services to investigate variation in provision by deprivation.

RESULTS

Clinic activity data were obtained from 93.9% (46/49) of clinical teams in England which between them received referrals from 84.9% (129/152) of PCTs. 12 PCTs, covering a population of 2.08 million adults, provided no specialist CFS/ME service. There was a six-fold variation in referral and assessment rates between services which could not be explained by PCT-level measures of deprivation and inequality.

The median assessment rate in 2010 was 0.25 (IQR 0.17, 0.35) per 1000 adults per year. 91.9% (IQR 76.5%, 100.0%) of adults assessed were diagnosed with CFS/ME. Postcode data from seven clinical teams showed that assessment rates were equal across deprivation quartiles for four teams but were 40–50% lower in the most deprived compared with the most affluent areas for three teams.

CONCLUSIONS

Two million adults in England do not have access to a specialist CFS/ME service. In some areas which do have a specialist service, access is inequitable. This inequity may worsen with the impending fragmentation of NHS commissioning across England.

Comment: Medical Xpress: http://medicalxpress.com/news/2012-08-chronically-fatigued-patients-huge-inequalities.html

I don't know what condition Crawley is talking about here or what prevalence she is looking at, but 'millions' I don't think so - and only 3-8% expected to fully recover if untreated?! What?! Where's she got that from?!:

Interesting Firestormm - no specialist services around here as far as I know - there used to be CBT/GET only at Maidstone which after unfortunate brief encounters everyone has avoided ever since for obvious reasons. Most find some aid from their GPs who though not understanding the underlying pathologies at least may (or may not) address some symptoms.

Those low numbers which recover with no treatment.. was actually based on a study (quite a time ago now) which showed recovery from this illness was very uncommon, the result Im thinking was something like only 3% (so maybe what shes saying came from the results from a couple of studies). Sorry i forgot now who did that study. It may of been the canadian definition which was used for it?

Those poor, poor people, deprived of GET and CBT... Being denied the opportunity to be told that they have cognitive and behavioral problems... Missing out on a chance to torture themselves with the help of highly trained professionals.

It's heart-rending.

Thanks for this Tania. I must admit I am rather perplexed at both the prevalence (reminds me of her claims made when she published that economic cost of CFS paper and the press releases that accompanied it), and this recovery rate.

I have yet to scour the paper I confess. Don't have the time at present. But I did notice the usual prevalence range quoted and even 2.6% wouldn't equate with 'millions' in England (well it's just over 1.5million I guess but even so...). Makes me suspect even more that she is relating to 'fatigue' personally.

This recovery figure is interesting. I mean on the face of it is it rather 'good news for raising awareness' as is the paper although I have to say in that regard I am somewhat bemused. I would have expected much more and for the conclusion to reveal a far worse situation - but there we go.

Yes this lack of recovery without assistance. I simply do not get it. I have never ever ever heard this mentioned before. I mean it goes against the party line. We are always told how recovery is more often than not spontaneous (or words to that effect) and in part this may have some truth to it.

But to say that only 3-8% will recover FULLY without treatment. Well. It's startling. I have to ask why I hadn't heard of this before. I mean it's assumptive of course - it assumes for one thing that any treatment will ensure full recovery. But the figure itself is incredible. I simply do not understand how it could have been arrived at.

I'll check out the paper later. Maybe there is a reference. But it's a weird statistic.

The 2 million figure relates to the total adult populations covered by the 12 PCT areas that don't have any M.E service at all. ("12 PCTs, covering a population of 2.08 million adults, provided no specialist CFS/ME service") 2.6% of the adult population of England is approx 750,000; 1.5 million would be 2.6% of the whole UK population; the authors do quote a range of 0.2% - 2.6%.

I would place this paper very firmly in the "please buy our services" category that is very much in evidence in advance of the contract purchasing flurry that has been engendered by the Govenment's plans to replace the PCTs with PCTs - er sorry I mean CCGs in the next 12 months. The CCGs, will be judged very much in terms of their compliance with NICE so to not have the M.E/CFS box as described NICE, having been ticked, risks the CCGs facing questions.

IVI

Actually this is potentially a serious issue - if there is no dedicated service, there may be no opportunity to get either the full range of necessary exclusionary confirmations i.e making sure someone doesn't have an acute lethal and/or treatable illness, or to get an M.E/CFS (well actually CFS/M.E) diagnosis. Potentially a patient could spend years in administratative limbo, as well as disease limbo. At best someone would have to progess through multiple referals to multiple specialisms with no diagnosis ever being given. Or because thre is no Consultant/Service to refer onto, GPs may simply take on themselves the decision to make the diagnosis, without any secondary check on proper exclusion of treatable illnesses. CBT and GET maybe of little value in M.E/CFS but the role of a specialist M.E/CFS service in the NHS can have a lot more significance than just CBT and GET delivery.

IVI

So the lack of ME/CFS specialists is a bad thing for people without ME/CFS, but the benefits of a lack of "specialists" still outweighs the drawbacks for the people that do have ME/CFS.

Ok. I'll bite

Not everyone with our condition feels that a specialist service is of no benefit Valentijn. I do know where you are coming from though but speaking from the perspective of our own service which was severely jeopardised recently (and remains so) the patient response would strongly support my second sentence.

For a great many people - including the severely affected - our community based service which includes home visits are all we have. That they aren't enough is very true also but I don't think it is ever simply a case of dismissing them completely.

Care and support if not always as effective treatment as we would wish is part and parcel of what should be offered to us all. And that requires I would argue a specialist service simply because not all general practitioners can be specialists or indeed can afford the time these days.

N.b. I still think Crawley is pushing for 'fatigue clinics' myself and I'm not convinced that this study is particularly useful but will reserve final judgement until I read it all more thoroughly

Except how many dedicated services offer such diagnostic services for the "full range of necessary exclusionary conditions"? My impression is most services don't offer much in terms of doing tests.

There is an me clinic about ten miles from me. Wish there wasn't. Had there not been then I would not have tried GEt and would not have got even worse!
Also GP just uses it to pass the buck. Even though they discharged me because they can't help me.

I strongly suspect that ME/CFS goes much more undiagnosed in Australia then in England cause of England having those clinics. I have 3 family members with ME/CFS who remain undiagnosed here in Australia (two of those have been told by their doctors that ME/CFS is a fake illness so doctors dont believe they have it as they believed they were sick).

Its hard to say which countries situation is worst.. having clinics in which people finally find out their diagnoses but which also make patients do GET and CBT or having no clinics and hence often no doctors, to turn to at all in regards of this illlness and to actually be told you have ME/CFS.

FInding out what illness one actually has and actually getting a diagnosis.. can be a very important thing (at least one can then go and research it online etc).

Speaking of exclusionary conditions - seems another hard nut to crack anyway. I suppose I had with my GP and yet we know the simple blood will not include targeted tests for the suspect viruses now being revealed. My Consultant Neurologist came up with excluded conditions (despite abnormalities including high spots on the MRI brain scan) closed his file admitting (on my production of Byron Hyde) could be ME and he couldn't aid. Into limbo for me, though my GP did allow some prescription drugs (eg Gabapentin) as symptoms raged. I think it is important to try to keep one's GP engaged if possible - difficult though that is when underlying pathologies have not been found - mindset on exclusions only.

I was not offering an argument that what the current clinics offer is adequate or even appropriate to patients' overall health care need - but that in the current structure of the NHS in England (NI, Scotland and Wales need to be considered separately), not having access to a clinic based service involves significant deficits when compared to having access. Though one could certainly characterise having a clinic based service as merely 'less bad'.

The available tests will likley be limited to the NICE guidelines, but (and Valentijn's witty observation not withstanding) at least excluding leukemia, diabetes etc provides important information to those patients in the early stages of having to get grips with a very confusing illness - and of course where treatable illnesses are identified, timely interventions can be made. A diligent and knowledgeable GP should be able to arrange all the basic testing - but there are still many primarary care doctors who are content for the patient to languish on anti depressants or forced onto the merry go round of Consultant referals. A one stop shop clinic, at least in principle, should compensate to a degree, for the risk of inadequate GP care.

I understand the antipathy to NICE and the disatisfaction with the NHS clinic based provision, big question at this point I think is whether the NICE guidance and consequently clinic structure will be responsive to developments in research into M.E/CFS.

IVI

I'm not sure why Wales, Scotland and N Ireland have to be considered seperately - we are part of the UK after all. I moved to Wales as an English UK citizen and i expect to have the same rights as those in England. We do not have ONE M.E clinic or sepcailist in the whole of Wales! Not even a consultant with a special interest. I am in the position that IVI discusses above.
17 years to get a diagnosis - which in the end came from a private doctor after testing. Now my GP has me on an andless merry go round of consultants trying to find the cause- and none of them doing anything effective to properly rule out other conditions. We have no supportive care whatsoever. When i was completely housebound i still had to find someone to take me in to see the GP every time i had a lung infection etc - even bedridden with Pneumonia i still had to go in.
Of course my moan is not to say that i wish we had access to CBT GET etc and a whole load of other nonsense - but as someone else pointed out - perhaps M.E clinics will eventiually have to get up to date with the research etc.
NICE guidelines will be exposed eventually.
Justy

There are, or were until recently, one or two in North Wales.

Just checked: two are mentioned by this (outspoken) website: http://karlkrysko.blogspot.ie/2010_03_01_archive.html

The problem in the UK is that the specialist clinics are staffed pretty exclusively by psychiatrists now.
Owing to the medical battle that has raged over who "owns" ME and no specialty other than the dreaded Psychs wanting us.

The psychiatric model of ME is seriously wanting and in some cases does harm patients.
Is no care better? In some cases, yes.

The psychs have a vested interest in burying research that leads to a biomedical understanding of this illness, so I dont see the network of clinics, staffed as they are, being very open minded to new research, or promoting any new treatment outside their "expertise".

I recently improved from privately using an immunomodulator that I had originally been prescribed on the NHS by my previous ME consultant, who was an immunologist.

The current psychiatrically led service refuse to provide this treatment, even though I was prescribed it by an NHS consultant and even though I improved on it before.

This is a triumph of dogma over experience.

There is a CFS/ME clinic near me, headed by a neuropysch. My GP has suggested referring me there but has had more sense thankfully than to do so. Even NHS Choices is listing CBT and GET as the first line responses.
Sometimes I despair.

I don't have much time to write this evening, but I do share the concern being expressed that we are generally bereft of non-psychiatrist medical specialists within the ME specialist services - especially at consultant level who are either experienced with ME and/or trained in neurology, immunology or rheumatology.

The non-psychiatric involvement does exist but until such time (and this has been asked for in all the reports that fed into the NICE Guidelines that I have read) as these disciplines either take ownership of the condition, or better ensure that training and knowledge of ME leads to their involvement, it is rather like a GP who expresses a 'special interest'.

Unless they are specifically appointed to the role i.e. it is made a part of their dominion, and they take responsibility, such consultants will remain rare. As I said in some parts of the country we do see such consultants taking an active role in ME services but certainly not everywhere and this absence brings with it the (perhaps irrational) feeling that whilst we are asked to keep an open mind about the e.g. cause of our debilitation - they have made they mind up.

Multi-disciplinary care is the aim within the specialist centres with Occupational Therapists, Psychologists, Physiotherapists being the most common I think. I genuinely think there is more to specialist services than CBT and GET and that even those two treatments whilst not for everyone and certainly not delivering what is sold on the tin, are seen as being helpful by some (although this may depend on the delivery).

There is another consideration at work here. In living with a long term debilitating condition be it ME or MS or Parkinson's or anything else - there is an increasing role being afforded to psychological management in an attempt to improve quality of life where no 'cure' exists. What I mean to say is that what we see happening to ME (which is in some respects a special case) is happening elsewhere and included within this thinking are for example 'pain clinics'.

Nhs services vary from region to region and of course in Wales you don't pay for your prescriptions whereas in England we do. Not sure about elsewhere...but the cost of that ultimately means less service provision and stuff like Me is bound to go first.

The psychologist I saw at the me clinic was actually alright. She's agreed that the illness wasn't psychological and said she could only help me to cope with being sick. I think my experience is unique tho.