Chronically fatigued patients face huge inequalities in accessing specialist services

August 17, 2012

New research has identified the true extent of inequalities faced by adults who require access to specialist Chronic Fatigue Syndrome [CFS] or Myalgic Encephalopathy [ME] services in England. The findings, published in the journal BMJ Open, reveal a ‘postcode lottery’ whereby patients from more affluent postcode districts are more likely to be referred to specialist services than those from more deprived areas.

The research, led by academics at the University of Bristol, is the first study of CFS/ME service provision in England which has investigated whether access to services is linked to measures of social deprivation and .

In 2007, the National Institute for Health and Clinical Excellence [NICE] recommended that all patients should have access to CFS/ME specialist services, and that referral should be offered within six months of diagnosis for mild forms of CFS/ME, four months for moderate CFS/ME, and immediately for severe cases. However, in 2010 it was reported by the All Party Parliamentary Group (APPG) that the provision of specialist care was patchy and inconsistent and the APPG recommended that research be undertaken to remedy the ‘unacceptable’ variation in access to services.

The study analysed data from 46 (94 per cent) of the 49 specialist CFS/ME services in England, which between them received referrals from nearly 85 per cent of Primary Care Trusts (PCTs), representing 95 per cent of the adult population (33 million people). The team mapped postcodes against clinic data to investigate whether assessment rates were related to PCT-level measures of deprivation and inequality.

The results showed that eight per cent (12/152) of PCTs did not provide a specialist CFS/ME service. Among the PCTs that did provide a service, the researchers identified a six-fold variation in assessment rates. In some areas, patients from more affluent postcode districts were more likely to access specialist CFS/ME services than patients from more deprived postcode districts.

Dr Esther Crawley, lead author and Reader in Child Health at the University of Bristol’s School of Social and Community Medicine, said: “Several million people in England are affected by this debilitating condition and only a small proportion (three to eight per cent) of CFS/ME patients are expected to recover fully if untreated. These findings reveal the magnitude of inequality faced by many patients in need of specialist care, and the consequences for those from some of the most deprived areas, who were half as likely to access specialist services compared with those from the most affluent areas.“

Sir Peter Spencer, Chief Executive of Action for M.E, the UK’s leading charity for people with Myalgic Encephalomyelitis (M.E.) and their carers, said: “This latest report dramatically underlines the fact that local commissioning has failed people with M.E., a key finding that was also highlighted in Action for M.E.’s recent survey of secondary care provision across the UK.

“The Secretary of State for Health needs to take action now to ensure that he personally holds local healthcare providers and Care Commissioners to account. Relying solely on ‘local accountability’ does not work for small patient groupings. It simply nurtures the insidious post code lottery so clearly revealed by Dr Crawley’s excellent paper.”

Colin Barton, Chairman of the Sussex & Kent ME/CFS Society said: "Although we have two specialist CFS/ME multidisciplinary teams in our region that are doing a fairly good job, they are very overstretched due to financial restraints meaning that there are very long waiting times and occasionally limited medical input. Early diagnosis and good management can often lead to improvements and better outcomes for those affected by CFS/ME so adequate NHS services are essential."

Mary-Jane Willows, Chief Executive of the country's leading ME/CFS charity for young , The Association of Young People with ME (AYME) said: "It's unacceptable that those living in affluent postcodes have an improved chance of recovery, whilst those in deprived areas are more likely to be condemned to a life of chronic pain and disability.

“We need to raise awareness, among GP's and Commissioners, of the devastating impact of this condition and increase commitment to developing existing services and establishing more experienced multi-disciplinary teams.

“We also need to find appropriate ways to reach out to those suffering from ME/CFS amongst ethnic minority communities, most of whom currently remain unheard and unseen."

The study, entitled ‘Equity of access to specialist (CFS/ME) services in England (2008-2010): a national survey and cross-sectional study, by Esther Crawley, Simon M Collin, Jonathan Sterne, William Hollingworth and Margaret T May, from the University of Bristol’s School of Social and Community Medicine is published in the journal BMJ Open.

Explore further: Is chronic fatigue a major cause of school absence?

More information: BMJ Open 2012;2:e001417 doi:10.1136/bmjopen-2012-001417

Related Stories

Is chronic fatigue a major cause of school absence?

December 13, 2011
(Medical Xpress) -- New research into the cause of school absence finds that up to one per cent of secondary pupils could be suffering from chronic fatigue. The study, led by academics at the University of Bristol is published ...

New research into chronic condition reveals long-term cost to UK economy

September 15, 2011
Myalgic Encephalopathy [ME] or Chronic Fatigue Syndrome [CFS] causes severe debilitating fatigue and affects up to 2.6 per cent of adults in Britain.  New University of Bristol research, published today [15 Sep], into ...

iPhone app launched to help people manage chronic condition

March 2, 2012
ActiveME, a new iPhone application, has been launched to help patients with Chronic Fatigue Syndrome/ME (CFS/ME).

Chronic Fatigue Syndrome challenges patients, medical professionals

July 1, 2011
(Medical Xpress) -- We all get a little tuckered out now and then, but when that tired feeling doesn’t go away with what’s considered normal rest and relaxation there are a myriad of medical conditions that can ...

B-lymphocyte depletion using the anti-CD20 antibody rituximab in chronic fatigue syndrome

October 20, 2011
Chronic fatigue syndrome (CFS) may be alleviated by the anti-cancer drug Rituximab, suggesting that the source of the disease could lie in the immune system, according to a new study published Oct. 19 in the online journal ...

Recommended for you

Amber-tinted glasses may provide relief for insomnia

December 15, 2017
How do you unwind before bedtime? If your answer involves Facebook and Netflix, you are actively reducing your chance of a good night's sleep. And you are not alone: 90 percent of Americans use light-emitting electronic devices, ...

Warning labels can help reduce soda consumption and obesity, new study suggests

December 15, 2017
Labels that warn people about the risks of drinking soda and other sugar-sweetened beverages can lower obesity and overweight prevalence, suggests a new Johns Hopkins Bloomberg School of Public Health study.

Office work can be a pain in the neck

December 15, 2017
Neck pain is a common condition among office workers, but regular workplace exercises can prevent and reduce it, a University of Queensland study has found.

Regular takeaways linked to kids' heart disease and diabetes risk factors

December 14, 2017
Kids who regularly eat take-away meals may be boosting their risk factors for heart disease and diabetes, suggests research published online in the Archives of Disease in Childhood.

Simulation model finds Cure Violence program and targeted policing curb urban violence

December 14, 2017
When communities and police work together to deter urban violence, they can achieve better outcomes with fewer resources than when each works in isolation, a simulation model created by researchers at the UC Davis Violence ...

Your pets can't put your aging on 'paws'

December 14, 2017
(HealthDay)—In a finding that's sure to ruffle some fur and feathers, scientists report that having a pet doesn't fend off age-related declines in physical or mental health.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.