Mrs Antoinette Christie (Parent & Carer of a teenage ME patient) and Mr Ken Hull (Chairman, NI MEA) got a 5 minute slot on Ulster Television's "UTV Life" at 5.30PM on Wednesday 9th April 2008.
At times both Antoinette and Ken were indistinct, and the transcriber had to use headphones for the soundtrack. It has been edited for brevity and clarity, punctuation has been added, and repetition deleted. Explanatory notes are added, in brackets.
Transcript.
A Belfast boy hasn't been to school for nearly 5 years. His parents are desperate for help.
A mother whose teenage son has ME, is paying an American doctor to treat him, because she says he's not getting enough medical attention locally.
Antoinette Christie says she's asked the Health Minister to fund biomedical research into the condition, but he's refused.
Letitia's been to meet her.
Letitia "David Christie, who's 15, has suffered from ME for years, and hasn't been to school since he was eleven and a half. He sleeps from 5 in the morning until 5 in the afternoon; and can rarely get out of bed when he is awake. ME, also known as Chronic Fatigue Syndrome, affects the immune and central nervous systems.
"David used to be active. He was a Ju Jitsu champion, and a keen rock climber and Boy Scout. Now his bedroom is his prison, and his mother is at her wit's end".
Antoinette " We're emotionally drained. David doesn't have a life. Today you look outside and see the sun, and David should be out at school. David's just been left, a prisoner in his own wee home".
Letitia "And how do you want ME to be treated by the government here?"
Antoinette " I want it to be funded. The Government's not funding it".
"I have personally written to Michael McGimpsey (The Northern Ireland Minister for Health) and got a reply from him. I've also written to Michael McBride (The Northern Ireland CMO), basically saying that they will not fund biomedical research into ME".
Letitia "How do they treat ME?"
Antionette " Psychiatric"
Letitia "And your contention is it's not a psychiatric condition".
Antoinette " We live with it. We know David didn't just get up one day, suddenly take sick and say 'Right, I'm not going back to school'. anybody who is depressed, doesn't want to do anything. You ask any ME sufferer - they want to do things. They can't - they're physically ill".
Letitia "There's no cure for ME and the effect on families is huge. David's parents haven't had a full night's sleep in 3 years and they can never take holidays. They are so desperate for help that they are paying for David to see an ME specialist from New York. Dr Derek Enlander, who will be in England for a conference in May, is flying to Northern Ireland to see more than a dozen ME sufferers".
"The Department of Health says:
* It provides annual funding to the Northern Ireland ME Association
* No specific funding is allocated for ME sufferers
* Patients have access to a range of services based on a clinical assessment of their need
* A range of treatment and support options are available, and those delivered will depend on the patient's specific symptoms and their severity"
UTV interviewer: "and we are joined now by Ken Hull, who chairs the Northern Ireland ME Association. We've heard a lot over the years about ME, Ken, but it stills seems to be a very misunderstood illness".
Ken Hull " It's still looked upon by some people as "Yuppie Flu", and some patients are accused of malingering. 7000 have it in Northern Ireland, and suffer to different degrees. Some like that young chap are bedbound, and others are just not able to function normally".
"It has not been taken seriously enough until comparatively recently, when the Chief Medical Officer took it on board. It's now looked upon by the National Institute of Clinical Excellence as an important entity".
Frank Mitchell, UTV " Yes it's been taken seriously now. Getting the funding, I suppose, is always the difficulty. The first symptoms of it are.....?"
Ken Hull " "Flu-type symptoms. You can't function; you find it difficult, say, to go upstairs; and difficult to remember things. Really, it's like having a permanent flu. You just can't get over it. You think one day you are better, and the next day you find you are worse. If you over-exert, it sets you back for weeks".
Frank Mitchell "Antoinette spoke about seeing a medical specialist from New York. What will he be able to tell her, or do for David that can't be done here?"
Ken Hull " I wouldn't be sure about that. People will try anything. Some ME patients spend a fortune on possible remedies. It's not often clear what the effects of these are".
"(In the NHS) patients are taught graded exercises, which helps some people, but doesn't help everyone; and there is cognitive therapy".
"I should say there is a clinic in Belfast at the City Hospital, run by an occupational therapist, who does an excellent job. But you find she is only part time".
"Originally patients came to Belfast from as far away as Enniskillen and Omagh. But now she's so snowed under that she can just take local referrals".
Frank Mitchell " Yes, it seems like the poor cousin to so many other illnesses. again, thanks for joining us this evening. Thank you".
Ken Hull "Not at all. Thank you".
Transcript ends.
Just as an observation, perhaps if the NI MEA had been allocated a little more air-time, our Representative could have had the opportunity to expand on several of the issues that had been supplied to UTV prior to the programme being compiled.
And, at no time did the NI MEA advocate either CBT or GET as a preferred option for treatment.
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