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The following article appeared in the Eastern Daily Press (EDP) on the 26th July 2018. Written by Geraldine Scott.

“Postcode lottery” claims have been made over treatment for myalgic encephalomyelitis (ME) in Norfolk and Suffolk, as one sufferer said variations in care had left her angry and abandoned.

Jo Moss, 43, from Norwich, was diagnosed with ME 12 years ago. She described feeling like she had been “missing behind closed curtains” ever since and said: “Like millions of others I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.”

But she said the illness had been made worse by not having access to treatment she said would give her “hope for a better future”.

Dr Luis Nacul, director of the CureME research group, presented clinical commissioning groups (CCGs) in Norfolk and Suffolk a proposal in 2016 for a cost-neutral consultant-led service.

The recommendations were accepted by CCGs in Suffolk.

However in Norfolk and Waveney those with ME are offered between six and 10 therapy sessions before being discharged back to their GP.

But Mrs Moss said this left those who were severely affected, and often bed bound, without care.

She said: “How can [the CCGs] justify making a decision that denies severely ill patients treatment that could dramatically improve their quality of life, and reduce their pain and suffering, especially if this treatment was at no extra cost to the service currently provided?”

She said the current system left “no support for the long term ME patient”, and added: “I have been left to cope with this devastating illness on my own. I am virtually bed bound and I suffer debilitating pain and exhaustion on a daily basis, yet I do not receive adequate or consistent care.”

Mrs Moss had already complained to the CCGs, but she said she would also like representatives to visit her at home to “see first-hand the impact severe ME has on [her] life”.

She added: “I don’t think they realise the impact of their decision on ME patients like myself. Access to treatment shouldn’t be a postcode lottery. Having specialist care from Dr Nacul would mean I wouldn’t have to battle this debilitating illness on my own like I have been doing for many years.”

It is estimated that around 250,000 in Britain are affected by ME, and for a large number the impact is life-changing.

A spokesman for the Norfolk and Waveney CCGs said: “A specialist ME/CFS service is in place to support patients, provided by East Coast Community Healthcare.

“It offers an outpatient service via face to face appointments, email, telephone and, in a small number of cases, home visits. The team is made up of GPs with specialist interest and knowledge of ME/CFS and specialist therapists including occupational therapists and physiotherapists.

“There have been ongoing discussions with people living with ME/CFS about the scope of the current service, and the CCGs will continue to ensure the views of people affected by ME/CFS are taken into account.

“NICE, the National Institute for Health and Care Excellence is planning a national consultation about management of ME/CFS. This is also something the Norfolk and Waveney CCGs would need to review and consider collectively in due course.”

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