Caerphilly woman 'angry' over MS drug delay won't accept Aneurin Bevan Health Board's apology

A woman who hasn't been given a drug that could help her walk says her local health board is "playing with people's lives."

Rachelle Ledsam used to work full-time as a secretary and lead a busy life but now she rarely goes out.

She was diagnosed with Multiple Sclerosis or MS in 2009, and says she now has "no quality of life."

"My walking is hopeless," she said. "If I clean one room, I'm exhausted."

"I couldn't be independent now, I couldn't go out and catch a bus, or go and see my friend."

But a drug called Fampridine that was approved for use in Wales in 2019 could help her walk again.

She currently takes Sative which helps her with leg spasms and tightness.

Rachelle has been fighting to get Fampridine since it was made available on the NHS- at that time, her neurologist at the Royal Gwent was optimistic she would get it soon.

But she's one of around 500 people in the Aneurin Bevan Health Board area who haven't been given the drug, something the Public Service Ombudsman for Wales has criticised the health board for.

Four years on she is "extremely frustrated" by the delays. She said: "I know people in Aberdare and Pontypridd who have had it. It feels like my life is being played with".

When Fampridine was approved for use Rachelle says she felt "so grateful, so lucky."

"I was excited, I was telling people I'd have it soon."

She knows "there's not a guarantee" it'll work for her but she would just like the freedom to be able to walk to the kitchen and make a cup of tea without being exhausted. Or to "walk on the beach" and feel the sand when on holiday rather than being in a wheelchair.

She says those little things would be "life-changing."

The health board say it is “very sorry for Rachelle's experience and will be contacting her to apologise for the distress this must have caused her.

“We are currently working through a plan to see how we can meet the Ombudsman’s recommendations in relation to the introduction of fampridine in our Health Board area."

But Rachelle says she can't accept that apology. Her message to the health board is: "You're playing with people's lives and I think it's terrible."

She says she feels "angry, disappointed" and her treatment "isn't fair."

"Stop the excuses and get on with it."