‘It’s hard to live a normal life’: MS patient rejects drug in NHS postcode lottery | multiple sclerosis

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Stephen Brooks’ ability to walk significantly improved when he took the multiple sclerosis drug fampridine for nine months as part of a clinical trial. However, the 67-year-old former butcher’s health has deteriorated since the trial ended and he was unable to get the drug on the NHS from his local hospital in Essex, because it was not approved for use in England.

“I was diagnosed with MS in my mid-30s when I had numbness in my right hand. My doctor set it up due to a repetitive stress injury from me using a chopper to slaughter but it turned out to be MS.

“I remember the nurse sitting on my bed and asking what I was going to do now. I said, ‘I’m going to continue in exactly the same way.’ At the time I didn’t realize what was going to happen, although MS can be very slow in progressing, with time It makes it difficult to live a normal life.

“Over the years, my MS has gradually worsened. I worked for over 20 years after my diagnosis. But by the time I retired, my feet were numb and I couldn’t walk, I was very tired a lot of the time and very limited in what I could do.

“I used to go to the pub but that became out of the question. I have always loved gardening – that was my main hobby – but I found it difficult to do and it is not possible now.

“I have always had very good care at Queens Hospital in Romford, and my neurologist consultation there brought me to an experience where I received a monthly supply of fampridine every time. It made a huge difference in my ability to walk and sit up and down. Nothing is worse than Not being able to do something as simple as walking to the toilet, but it made walking so much easier.

“On the property I was able to get up and walk, not for miles but a little further than usual, compared to before, when I could only walk a little and was at risk of falling. It has improved my quality of life.

“I was upset when I couldn’t get the medicine anymore. But that’s because it’s not available on the NHS in England, because it costs so much, even though people with MS in Scotland and Wales can get it. So why not prescribe it for someone who needs it here too? I miss Not having it, especially now that she’s on stage where I can’t walk and I can’t stand.”

As told by Dennis Campbell

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