MULTIPLE sclerosis patients in Oxfordshire are missing out on life-changing drugs.

A survey by the MS Society found 79 per cent of Oxfordshire MS patients are not getting proper help.It is one of the poorest rates in the UK according to the charity, which spoke to 131 MS suffers in the county.

The report A lottery of treatment and care: MS services across the UK is out today. It points out major disparities across the UK in access to MS medicines, social care, employment support and MS health professionals. The charity said lack of information about licensed drugs was a big factor, as was a chronic lack of access to MS specialists.

Nick Rijke, director for policy and research at the MS Society, said: “These findings worryingly suggest many people with MS are denied treatments that can dramatically improve quality of life, reducing relapses and the often devastating symptoms that come with them.”

Health bosses in Oxfordshire say 1,950 people in the county have MS.

The condition cannot be cured, but certain licensed drugs can improve quality of life and even stop the condition from progressing.

The MS Society is calling on the Government to ensure every MS patient has a personalised treatment, care and support plan, with two medical reviews each year.

Witney resident Roger Keable has lived with the condition for 40 years. He was diagnosed aged 24 while serving in the RAF.

He said he was not surprised by the findings, as he had never been offered licensed drugs, despite hearing testimony of how fellow sufferers’ lives had improved.

The 66-year-old said: “The problem is pharmaceutical companies commission trials, then produce drugs, but then the people who need them either can’t afford them or aren’t offered them.

“A cannabis-based drug – Sativex – is meant to ease many symptoms and help with spasticity in legs, which is something I suffer with, but my consultant has always said ‘no’.

“People are more aware but more still needs to be done, and we need better access to the kind of drugs that can help.”

John Chipperfield, of Kidlington, chairman of the Oxford branch of the MS Society, said: “It’s important people with MS, as well as their carers and relatives, put pressure on health professionals so they can be given the correct treatments.”

The charity has pledged to work with the Oxfordshire Clinical Commissioning Group (OCCG) to identify how to improve support. The OCCG said a number of new services had been developed. A spokesman added: “In April commissioning responsibility for prescribing disease-modifying drugs passed to NHS England, and is not the responsibility of OCCG. We have not had feedback from clinicians that suggests Oxfordshire patients are being denied the drugs.”

Mr Keable, of Burwell Drive, said: “I was young at the time of my diagnosis, and it was quite a shock.

“MS comes in stages, remission and relapse. Later on you don’t get the attacks or remission, you just get progressively worse.”

“My walking has deteriorated, although I do what I can to keep active by going to the gym.

 

 

Multiple Sclerosis

Multiple sclerosis (MS) is a disease affecting nerves in the brain and spinal cord, causing problems with muscle movement, balance and vision.
Brain and spinal cord nerve fibres are surrounded by a layer of protein called myelin, which protects and helps electrical signals from the brain travel to the rest of the body. In MS the myelin becomes damaged, and this disrupts the transfer of these signals, causing a wide range of potential symptoms, such as loss of vision, spasticity, ataxia and fatigue.
After around 10 years about half of people with relapsing remitting MS will go on to develop secondary progressive MS.
Symptoms gradually worsen and there are fewer or no periods of remission. The least common form is primary progressive MS. In this type, symptoms gradually get worse over time and there are no periods of remission.

“If you can imagine having feet like lead, legs like rubber, and living your life swaying on the deck of a boat. And there are so many hidden symptoms, like fatigue, depression, and bladder issues. “Going on holiday has become such a problem. It’s very difficult for me and my wife.”