MS sufferer hits out at health bosses after being denied life-changing drug
A multiple sclerosis sufferer has hit out at health bosses after being denied a drug he says significantly reduces his symptoms.
Steven Colborn, 54, has suffered with multiple sclerosis (MS) since he was 19.
Mr Colborn’s symptoms were eased, though, when he embarked on a clinical trial for the drug Sativex with City Hospital Sunderland NHS Foundation Trust.
The NHS has now apologised to the father-of-two as, although his quality of life was improved by the drug, it will not be now made available for him.
Instead, he has to pay £412 a month to use it – which he paid for three months following the trial, but could no longer afford – with one of the alternatives presented to him being to undergo an operation to install a Baclofen infusion pump.
The pump would rest beneath Mr Colborn’s skin, but he has no confidence that the operation would work, having had a bad experience with Baclofen in the past.
Mr Colborn, who is married to Eileen and a dad to Christopher, 20, and Graham, 27, said: “When on Sativex, my legs aren’t as rigid as they normally are and I can walk a lot better.
“I can’t walk at all at the moment without having to drag my legs.
“The drugs make my life better, and make it easier for me to do physiotherapy to reduce the side effects of MS.
“It also allows me to sleep at night, which I had hardly done because of the pain for three or four years.
“I applied to an independent funding request panel for Sativex, but was denied.
“It’s very frustrating and angering to know that these drugs help me, yet I can’t get them from the NHS.
“I’d have to save for months just to get one month worth of the treatment.”
On the potential of an operation, which would take place at Middlesbrough’s James Cook Hospital, Mr Colborn, from Ivy Avenue, Seaham, said: “I was on Baclofen about eight or nine years after I was first diagnosed, and it didn’t really work for me.
“The side effects were more than the benefits I was getting.
“I would prefer not to have to have the operation, because it will inhibit the other things I do, such as stretching to reduce the effects of MS.
“It will affect my life if I have to go through the operation.
“If that’s the only option, though, I’ll have to do it.
“It’s just so frustrating to know, though, that there’s a drug there that I know works for me, yet I can’t get.
“The trial proved conclusively that I was a good responder.”
Dr James Carlton, medical advisor for NHS Durham Dales, Easington and Sedgefield Clinical Commissioning Group (DDES CCG), said: “DDES CCG recognise the anguish caused by this decision to the patient and apologise that on this occasion he was let down.
“We are very familiar with this case in that the patient embarked on a clinical trial for Sativex with City Hospital Sunderland NHS Foundation Trust.
“The clinical trial was undertaken and funded independently by City Hospitals Sunderland and without approved financial funding from any clinical commissioning group beyond the initial trial period.”
Mr Colborn is now hoping to be accepted on another clinical trial, this time at the Royal Victoria Infirmary, in Newcastle.
He is planning to launch an official complaint about the process with Sativex.
What is MS.
Multiple sclerosis (MS) attacks the central nervous system, and causes spasticity, which makes the muscles very tight.
The neurological condition affects about 100,000 people in the UK, and is usually diagnosed in people between the ages of 20 and 40.
Causes of the condition are unknown, and it there are a number of symptoms.
They include fatigue, vision problems, muscle spasms, mobility problems, pain, anxiety, numbness and tingling.
There is not a cure for MS, but the disease can be slowed by treatment.
The treatment can reduce the amount of relapses sufferers get, and slow down the damage it causes.