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Family's anger as ME unit is closed

Monday 16 May 2011

From UK newspaper the East London and West Essex Guardian:


Queen's Hospital in Romford
Queen's Hospital in Romford

CHIGWELL: Family's anger as ME unit is closed

2:13pm Thursday 12th May
By Tom Porter »

A FAMILY has claimed NHS bosses failed to tell desperate patients about a specialist unit for a rare illness before closing it due to a lack of demand.

Last year Benjamin Feld, 15, of Fontayne Avenue in Chigwell, started suffering from extreme fatigue that left him too drained to socialise or complete his GCSE schoolwork.

His GP referred the West Hatch High schoolboy to a paediatrician who diagnosed Chronic Fatigue Syndrome, or ME, and said there was not any treatment available to help him.

Despite the family’s repeated requests for specialist help, professionals failed to inform them of the existence of the Chronic Fatigue Syndrome specialist treatment centre at Queens Hospital, Romford.

Benjamin’s mother, Joanne, 46, only discovered the existence of the unit when she heard a nurse at her GP’s office refer to it in passing.

She said: “We were just told to go away by doctors and that there was nothing they could do.

“People did not know about this unit. At no time was it mentioned to us. We asked our paediatrician and it took a nurse to tell me about it.”

When they finally booked an appointment they were told that the centre was closing due to a lack of demand and that it would be unable to take patients after April.

Mrs Feld has been forced to have Benjamin treated privately by the unit’s consultant Professor Findlay, which has placed enormous strain on the families finances.

“It is a lot of money and private health insurance does not cover critical conditions,” she said. “Professor Findlay takes patients privately and it takes ages to get an appointment with him so there must be a demand for his treatment.

A spokeswoman for the Barking, Havering and Redbridge Hospitals Trust which runs Queens Hospital said that the service was being reviewed ahead of Professor Findlay’s retirement.

She added: “If the review decides that we should discontinue our inpatient CFS service, patients and their GPs will be supported through advice and guidance clinics.”

A final decision on the future of the service is expected later this month.


The above, with comments, originally appeared here.



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