Patient’s plea for treatment
AN Ilfracombe mum of three with multiple sclerosis is calling for the NHS to recognise a radical new treatment which has given hope to millions of MS sufferers worldwide.
Jayne Morrow, 42, says it is unfair she will have to spend �5,500 and possibly travel overseas for the treatment she believes could ease her condition.
And there would be many others who could not raise the money, she said.
“The health service in this country will not recognise it,” said Jayne, who until she was diagnosed three years ago, was a successful fitness instructor and personal trainer in North Devon.
“People with this debilitating illness should not have to wait years for the wheels of medical bureaucracy to turn, by which time they could be unable to move or speak.”
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The disease causes extreme fatigue, numbness, loss of muscle coordination, plus problems with vision and speech.
Jayne says sufferers should have the right to choose a new “liberation treatment” pioneered by Italian doctor Paolo Zamboni, who last year announced MS was caused by blockages to veins which connect to the brain, resulting in damage and not a problem with the immune system as previously thought.
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Using a straightforward angioplasty procedure to open up veins he claimed to have stopped the symptoms of his wife’s MS and had similar success with dozens of patients.
The internet is now abuzz with success stories, but if anyone wants the treatment they have to travel abroad to Eastern Europe or Asia and Jayne believes the NHS should be doing more to make it available here.
She is booked for a CCSVI scan at a clinic in Glasgow in September. If it proves positive the operation will cost a further �5,000, but she does not know where that might be carried out.
“Blocked veins are a recognised condition here in the UK, but as soon as you mention MS everyone runs,” she said.
“I agree trials should take place, but expecting us to wait 10 years for the results is wrong. We have a progressive illness and they should treat us and trial us at the same time. In fact, it is against our human rights not to.”
She has also begun taking a new drug for MS known as LDN, which she pays for herself and has given up the NHS treatment of expensive beta interferon drugs, which she says costs the NHS �50 million a year.
Both Jayne and her husband Dave say they are disappointed at the lack of information the NHS has given them on options that might be available.
“Because Jayne’s MS has been quite stable I think they felt she was getting the best treatment she could and we just had to get on with it,” said Dave.
“Because of her fatigue it was a struggle for us just to go out down to the park with our youngest and that would make her very upset.”
The condition described by Dr Zamboni is known as “chronic cerebro-spinal venous insufficiency” (CCSVI.) Some preliminary studies are being prepared in Canada and the US but it is unknown when or if the procedure will be available here.
Jayne concluded: “I speak for those people who can’t talk, walk and are bed ridden. I am disgusted and very hurt from the attitudes we’ve had from the people that should be helping us.”
A spokesman for NHS Devon said in regard to the LDN drug: “It is too early at the moment and more research needs to be done around it before NHS Devon looks at commissioning the drug.”
An MS Society spokeswoman said of the new treatments: “The MS Society shares people’s enthusiasm for what could be a positive breakthrough in MS treatment and we want the best outcome for people with MS. At the moment, there is not enough evidence to show that either CCSVI or LDN treatment is effective and as such more research is needed and welcomed. Research of a high quality is a slow process and we understand peoples’ frustration.
“Regarding CCSVI, we are part of an international effort and the National MS Society in USA has awarded funding to seven research projects into CCSVI - these will start as early as next month. We do not recommend people take unproven treatments outside of a properly regulated clinical trial.”