CHIGWELL: Family's anger as ME unit is closed

East London and West Essex Guardian Series: CHIGWELL: Family's anger as ME unit is closed CHIGWELL: Family's anger as ME unit is closed

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.

Comments (4)

Please log in to enable comment sorting

4:40pm Thu 12 May 11

Joe Swayton says...

I get awful fatigue and tiredness but it is just that and it still has not been proved that ME is just not lazyitis. Why is it that everyone wants to pin a name to an everyday fact of life?
I get awful fatigue and tiredness but it is just that and it still has not been proved that ME is just not lazyitis. Why is it that everyone wants to pin a name to an everyday fact of life? Joe Swayton
  • Score: -1

6:03pm Thu 12 May 11

Valentijn says...

@Joe: Numerous recent studies have shown a variety of objective signs of CFS/ME that can be observed by doctors. These include the presence of very high levels nitric oxide and its products around the muscles being used, as well as brain lesions for the more seriously affected, and nerve infections in deceased patients. This is not "fatigue". It is a debilitating muscle weakness that results in muscle pain, muscle twitching, and even cramps after even minimal activity. Please do half an hour of research, such as on scholar.google.com before dismissing the suffering of millions of people as laziness.
@Joe: Numerous recent studies have shown a variety of objective signs of CFS/ME that can be observed by doctors. These include the presence of very high levels nitric oxide and its products around the muscles being used, as well as brain lesions for the more seriously affected, and nerve infections in deceased patients. This is not "fatigue". It is a debilitating muscle weakness that results in muscle pain, muscle twitching, and even cramps after even minimal activity. Please do half an hour of research, such as on scholar.google.com before dismissing the suffering of millions of people as laziness. Valentijn
  • Score: 1

11:44pm Thu 12 May 11

Joe Swayton says...

Valentijn wrote:
@Joe: Numerous recent studies have shown a variety of objective signs of CFS/ME that can be observed by doctors. These include the presence of very high levels nitric oxide and its products around the muscles being used, as well as brain lesions for the more seriously affected, and nerve infections in deceased patients. This is not "fatigue". It is a debilitating muscle weakness that results in muscle pain, muscle twitching, and even cramps after even minimal activity. Please do half an hour of research, such as on scholar.google.com before dismissing the suffering of millions of people as laziness.
Oh, did not realise sorry!
[quote][p][bold]Valentijn[/bold] wrote: @Joe: Numerous recent studies have shown a variety of objective signs of CFS/ME that can be observed by doctors. These include the presence of very high levels nitric oxide and its products around the muscles being used, as well as brain lesions for the more seriously affected, and nerve infections in deceased patients. This is not "fatigue". It is a debilitating muscle weakness that results in muscle pain, muscle twitching, and even cramps after even minimal activity. Please do half an hour of research, such as on scholar.google.com before dismissing the suffering of millions of people as laziness.[/p][/quote]Oh, did not realise sorry! Joe Swayton
  • Score: 0

8:26am Fri 13 May 11

Kingfisher19 says...

ME is not a rare illness as stated in first line of the article
ME is not a rare illness as stated in first line of the article Kingfisher19
  • Score: 0

Comments are closed on this article.

click2find

About cookies

We want you to enjoy your visit to our website. That's why we use cookies to enhance your experience. By staying on our website you agree to our use of cookies. Find out more about the cookies we use.

I agree