What is the current NHS service provision for patients severely affected by CFS/ME (McDermott et al)

[Dolphin]

Free full text: http://bmjopen.bmj.com/content/4/6/e005083.full

BMJ Open 2014;4:e005083 doi:10.1136/bmjopen-2014-005083

• Health services research

What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise

1. Clare McDermott1,
2. Atheer Al Haddabi2,
3. Hiroko Akagi3,
4. Michelle Selby4,
5. Diane Cox5,
6. George Lewith1

+Author Affiliations

1. C.McDermott@soton.ac.uk

• Received 26 February 2014
• Revised 21 May 2014
• Accepted 22 May 2014
• Published 1 July 2014

Abstract

Background

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), in its most severe clinical presentation, can result in patients becoming housebound and bedbound so unable to access most available specialist services.

This presents particular clinical risks and treatment needs for which the National Institute for Health and Care Excellence (NICE) advises specialist medical care and monitoring.

The extent of National Health Service (NHS) specialist provision in England for severe CFS/ME is currently unknown.

Objectives

To establish the current NHS provision for patients with severe CFS/ME in England.

Setting and participants

All 49 English NHS specialist CFS/ME adult services in England, in 2013.

Method

Cross-sectional survey by email questionnaire.

Primary outcome measures

Adherence to NICE guidelines for severe CFS/ME.

Results

All 49 services replied (100%).

33% (16/49) of specialist CFS/ME services provided no service for housebound patients.

55% (27/49) services did treat patients with severe CFS/ME and their interventions followed the NICE guidelines.

The remaining services (12%, 6/49) offered occasional or minimal support where funding allowed.

There was one NHS unit providing specialist inpatient CFS/ME provision in England.

Conclusions

Study findings highlight substantial variation in access to specialist care for patients with severe presentation of CFS/ME.

Where treatment was provided, this appeared to comply with NICE recommendations for this patient group.

 

[Dolphin]

The review history is available for this online. I read it quickly and found nothing of interest in it (sometimes I find these interesting to read to see what points reviewers disagree with or suggest be made), so I wouldn't recommend people spend their time on it.

Here are the two reviewers and the interests they declared:

Simon Collin
University of Bristol, UK
Dr Akagi is Clinical Lead of an NHS specialist CFS/ME service
which contributes data to the CFS/ME National Outcomes Database,
which is managed by me at the University of Bristol.

Alastair Miller
Consultant Physician
Tropical & Infectious Disease Unit
Royal Liverpool University Hospital
Honorary Senior Lecturer
Institute of Infection & Global Health
University of Liverpool UK
I am Clinical Lead for CFS in the Liverpool CFS service - one of the
responding services that does not have provision for severly affected
I am Chair of BACME executive
I am Principal Medical Adviser to Action for ME

 

[Esther12]

the National Institute for Health and Care Excellence (NICE) advises specialist medical care and monitoring.

Doesn't sound like they're missing out on much, especially as a lot of CFS centres seem to be pretty quacky in what they do provide.

While I'm really sympathetic to those seriously ill patients who just feel abandoned, at the moment, I'd be concerned that any attempt to roll out greater 'service' to them would just lead to them having to endure quackery. FINE is the only trial to have really looked at the severely affected, and found that providing 'pragmatic rehabilitation' to patients led to no improvement in reported symptoms, and problems with the therapists blaming patients for this. Seems crazy to increase spending by the NHS on 'services' which have no evidence of real value while so many of the severely affected are having to endure real hardships on account of the DWP's recent biopsychosocial reforms to the welfare system and cost cutting. To improve people's quality of life, probably better to give them money rather than those working for the NHS.

 

[Esther12]

The review history is available for this online. I read it quickly and found nothing of interest in it (sometimes I find these interesting to read to see what points reviewers disagree with or suggest be made), so I wouldn't recommend people spend their time on it.

Thanks. Really good idea to make these reviews public though - love it.

 

[Dolphin]

I didn't find this to be a very interesting article at all.

None of the debates that exist in the field are discussed.
All respondents seem to have said they're following the "party line" e.g.

Similar variations in the use of terminology became apparent with the term ‘pacing’. Several participants commented that they used ‘pacing’ in the sense of balancing rest and activity within the context of other treatments (eg, graded activity) but wished to emphasise that they did not use pacing as a‘stand-alone therapy’

.

No biological findings are mentioned that I recall.

 

[Dolphin]

This is the context in which everyone said they were operating:

Box 1
NICE 2007 guidelines on severe chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME) (extract,
page number 305)

General principles of care

▸ Management of severe CFS/ME is difficult and complex and
healthcare professionals should recognise that specialist
expertise is needed when planning and providing care for
people with severe CFS/ME.

▸ Diagnosis, investigations, management and follow-up care for
people with severe CFS/ME should be supervised or supported
by a specialist in CFS/ME.

▸ When making decisions about prolonged bed rest, healthcare
professionals should seek advice from a specialist experienced
in the care of people with severe CFS/ME. The significant
physical and psychological risks associated with prolonged
bed rest should be taken into account.

▸ Healthcare professionals working with people with severe CFS/
ME who are in bed most (or all) of the time, should explain
the associated risks (such as postural hypotension, deep
venous thrombosis, osteoporosis, pressure sores and deconditioning) and monitor these.

▸ People with severe CFS/ME should be offered an individually
tailored activity management programme as the core therapeutic strategy, which may be delivered at home, or using telephone or email if appropriate, drawing on the principles of
cognitive–behavioural therapy (CBT) and graded exercise
therapy (GET).

 

[Dolphin]

Some of the figures and tables contain most of the information (but it's still not that interesting, I thought)

Figure 2 Provision of care for severely affected patients by
specialist National Health Service chronic fatigue syndrome/
myalgic encephalomyelitis (CFS/ME) services England, 2013.

Table 1 Therapeutic approaches used (in combination)
by CFS/ME services for severely affected patients

Table 2 Health professionals on the multidisciplinary
team among the 30 CFS/ME services which provide
services for severely affected patients

 

[Dolphin]

Here's a factoid:

The total sum of severely affected patients on caseloads reported by all the services in England combined was 408 patients.

However, I'm not sure how interesting this is as some people stay as cases for years, while others get discharged.

 

[Dolphin]

They say they're doing another paper on the survey data:

The questionnaire also included a free-text question on participants’ views on barriers to service provision for severely affected patients. This data will be the subject of a separate qualitative paper.

Maybe this will be more interesting, maybe not.

 

[Sasha]

When I saw this title, I thought it would be about NHS provision of all types of medical care for severely affected PWME - that is, can we access services when specific, non-ME things go wrong with our bodies? Can we get dentistry, gynaecology, oncology - anything - that we need, if we're bedbound?

 

[Valentijn]

When I saw this title, I thought it would be about NHS provision of all types of medical care for severely affected PWME - that is, can we access services when specific, non-ME things go wrong with our bodies? Can we get dentistry, gynaecology, oncology - anything - that we need, if we're bedbound?

Medical care at home wouldn't fit into the psychiatric model advocating minimal doctor visits. They just want more funding so they can ridicule and torture patients at home now too.

 

[alex3619]

I know of one patient in the UK who got home "help" with cleaning. Even this was tainted though, as "help" consisted mostly of harassing her to do more, with the idea that more activity is better. The effects of the NICE guidelines go even outside the traditional medical model.

 

[Sasha]

Medical care at home wouldn't fit into the psychiatric model advocating minimal doctor visits. They just want more funding so they can ridicule and torture patients at home now too.

But not everyone buys into the psychiatric model. I'd like to see some sensible researchers doing some research on whether patients' medical needs are being met.

Whether one attributes ME to organic or psychosocial factors, there's nothing about having it that prevents one from having dental problems, getting cancer, having gynae problems, any of this other stuff.

 

[Sidereal]

When I was in that state, my worst fear was that those "services" would one day show up at my door.