Lives of children with ME/CFS ‘put on hold’ through lack of referral services | Oxfordshire GPs tell local group | 21 January 2013

January 21, 2013

There are estimated to be 310 children under 14 with CFS/ME in Oxfordshire – many of whom have had to put their futures on hold because there are no local specialist medical services to help them recover.

Patient group OMEGA {Oxfordshire ME Group for Action) recently surveyed Oxfordshire GPs, with the support of Oxfordshire Local Involvement Network (LINk), on services for patients with CFS/ME. They found that over two thirds (68%) of GPs would support a multidisciplinary team for children because they feel that services for young patients with ME/CFS are even less satisfactory than those for adults. At present the Oxfordshire Community CFS/ME Team (OCCMET) is only able to treat children from the age of 14, which leaves families struggling to manage on their own with an illness that is often misunderstood.

Mark Ellis, father from Oxfordshire, whose daughter has had ME for nine years says:

“When Sophie fell ill, although supportive, our GP simply did not have the knowledge or understanding of the illness to recognise it; they just do not have enough information or training. Because it took 6 years for her to receive a confirmed diagnosis of ME, her doctors didn't know how to treat her and her condition became increasingly worse over time. For the past 3 years she has been severely affected and has been in hospital for a total of 7 months in the last year being fed by tube to keep her alive. If ME had been diagnosed when she first became ill following a gastric virus 9 years ago, and we had received good advice, there is no doubt that she would not have become so severely ill. Better education for GPs and a community service for children like Sophie are vital to prevent this happening to another child.”

Mrs Kew, a mother from Oxfordshire, whose son was diagnosed with ME seven years ago, said:

“We had four different paediatricians over five years, and it was unhelpful to have to restart with each one. We were sorry we weren't able to get a referral to OCCMET as we heard it was helpful to another family of a child over 14 years old.”

Ten years ago, Oxford ME Group for Action (OMEGA) surveyed Oxfordshire GPs and found that they were unclear about the system for referral and treatment of adult ME/CFS patients and that a majority were in favour of setting up a specialist clinic. Findings from this survey helped Oxfordshire PCTs to secure Department of Health funding for the specialist community treatment service, the Oxfordshire Community CFS/ME Team (OCCMET) .

Despite being classified as a serious neurological illness by the World Health Organisation, CFS/ME remains much misunderstood. The National Institute for Clinical Health and Excellence (NICE) stated in 2007 that:

‘The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.’

As long as a decade ago the government’s Chief Medical Officer said:

“CFS/ME is a relatively common condition that can cause profound, often prolonged illness and disability, and have a substantial impact on the individual and family.”

This recent survey shows that a quarter of Oxfordshire GPs still do not know where to send their adult patients for treatment – the same proportion as found by OMEGA’s earlier survey. The results of the current survey also revealed that although the vast majority (93%) recognise CFS/ME as a clinical entity three-quarters (74%) call for more information to be provided and said there is a need to clarify and improve the guidance to GPs and improve awareness of CFS/ME services. Very many (89%) of GP respondents were in favour of a primary care (community based) single point of access to services for CFS/ME.

This lack of knowledge extends not only to referrals but also to basic up-to-date information. The survey revealed that GPs are often unaware of how to find good quality current information about this serious condition. It is disappointing that many GPs still do not have the information they need to enable people with ME/CFS to get the best treatment. Fortunately, good information is available; patient group OMEGA recommends some of the latest internationally agreed information from the International Consensus Panel on ME.

OMEGA Member Patricia Wells says:

“Our GPs are under great pressure and we are grateful to those who filled in our survey. We are pleased that they recognise this horrible illness as a clinical entity. Many GPs are very helpful to us, as patients with ME. They say they need better information and this is confirmed by our members who experience different levels of knowledge and understanding.”

Changes are needed to improve services for children and adults with ME/CFS to enable them to receive the medical support that they need.

1 thought on “Lives of children with ME/CFS ‘put on hold’ through lack of referral services | Oxfordshire GPs tell local group | 21 January 2013”

  1. It’s scandalous. If this was happening to people with cancer, diabetes, MS for example, there would be an outcry. Shocking to read that children are STILL suffering extremely disabling and probably permanent severe ME because of years of medical neglect.
    The only positive thing I can find is that at least a majority of GP’s surveyed want more proper information. I know MEA has raised funds to send the purple clinical guideline booklet to surgeries, but I wonder whether, funds permitting, there could be a big campaign to circulate the International Consensus information too.

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