23/01/13…….Call for better treatment for children with ME
PATIENTS and GPs in Oxfordshire are calling for better treatment for younger children with Chronic Fatigue Syndrom (ME).
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 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 six 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 three years she has been severely affected and has been in hospital for a total of seven 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 nine years ago, and we had received good advice, there is no doubt that she would not have become so severely ill. Better education for GP?s 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.?
OMEGA Member, Patricia Wells, said: ?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.”
