Health services research + Meridian News report | NHS failing people severely affected by ME/CFS | 1 July 2014

From BMJ Open (full paper available), 1 July 2014

Health services research

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

Clare McDermott(1), Atheer Al Haddabi(2), Hiroko Akagi(3), Michelle Selby(4), Diane Cox(5), George Lewith(1)
1) Department of Primary Care and Population Science, University of Southampton, Southampton, Hampshire, UK
2) Faculty of Medicine, University of Southampton, Southampton, Hampshire, UK
3) Leeds and West Yorkshire CFS/ME Service, Seacroft Hospital, Leeds, Yorkshire, UK
4) Dorset CFS/ME Service, Wareham Hospital, Wareham, Dorset, UK
5) University of Cumbria, Lancaster, UK
Correspondence to Clare McDermott; C.McDermott@soton.ac.uk

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.

Strengths and limitations of this study

Our survey received a 100% response from the 49 chronic fatigue syndrome/myalgic encephalomyelitis specialist services in the National Health Service (NHS) in England and all data queries were resolved via telephone or email.

The study collected data on adult specialist CFS/ME services only. Further research is needed to determine paediatric service provision.

While this study collected data on service provision, it did not collect data on clinical outcomes for treated patients. This limitation should be addressed by further research.

ITV Meridian, which covers Southampton, put out this short news items this week: Lack of support for ME sufferers makes life even harder