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I’ve cut down on essentials to afford my medication

Martin

I live with secondary progressive MS. I’m struggling to look after myself and cook, clean and do household chores. I need some help at home but I can’t afford to pay for care.

I’m expected to contribute financially to my care. When I was assessed for care, I was told they couldn’t take into consideration the £200 a month I pay for fampridine, my symptom management treatment.

How my medication helps my MS

For me the impact of taking fampridine is huge. I first started taking it on a 4-week trial. I was housebound before the trial but by the end I could walk over a mile to my mum’s house. I felt wonderful, I was really happy. But after the trial I was told I couldn’t get it on the NHS in England. Some clinicians were managing to get funding for their patient, but my team weren’t able to do anything.

I was battling without it for a year or so, and just couldn’t cope. So I made the difficult decision to start paying for it privately. I’ve had to cut down on food and heating to afford it. I know that there will come a point where I can’t afford it anymore, and I have to stop.

I want to keep myself well

I’m still not back to the level of mobility I was at before. Being less active has had a terrible effect on me, I developed type 2 diabetes and muscle ache. Thankfully I managed to secure funding for some gym sessions. It makes a huge difference, but the funding will run out soon, and then what? I’m also paying £24 a week for taxis there and back which I’m struggling to afford.

It’s important to keep warm in winter because I can’t move about much. It’s not as simple as wrapping up with layers on. Sitting in the cold house will cause me issues with my MS symptoms. This can include my legs, hands and fingers seizing up more than usual. My cognition gets worse. I’ll layer up, yes, but having the house at a comfortable temperature is such a necessity for me.

The impact on my quality of life

My financial struggles have a devastating effect on my mental health. I’m stuck inside. The cost of taxis mean I struggle to do things like visit my parents and get to medical appointments. I get PIP, which is designed to support people to have more independence and get out of the house – but I’m forced to spend mine on my medication.

I’m worried about what’s going to happen next. My shopping bills are going up every week. How will I pay bills and put food on the table as well as paying £200 a month for fampridine? Winter time is coming and I don’t know how much I’m going to be able to put the heating on.

At the moment the government are just papering over the cracks and sticking a plaster on.

The support package is just not enough.

You don't have to face challenges alone. Find out about extra financial support you could get, as well as disability benefits.

You can also speak to our MS Benefits Advisor through our MS Helpline on 0808 800 8000 or email [email protected].

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