Mum heads to India for pioneering MS treatment after being deemed ‘too disabled’ to receive it in UK

A mum battling multiple sclerosis has flown to India for life-changing treatment after she was deemed “too disabled” by the NHS to receive it in the UK.

Susan Timlin has been fighting the debilitating condition for more than 30 years, which has left her isolated and often too ill to get out of bed.

The 56-year-old’s heart soared when she became aware of a radical therapy known as autologous haematopoietic stem cell transplantation or AHSCT.

And she believes it could help reduce the pain and fatigue she suffers from everyday and would greatly enhance the quality of her life.

But Susan’s world came crashing down when she claims NHS England told her she was “too disabled” to receive the treatment in the UK.

Susan Timlin travels almost 5,000 miles to India for treatment (Image: Therese Timlin)
Now, the former bank clerk has travelled almost 5,000 miles to India, where she expects to pay around £30,000 for the treatment and living costs.

Her sister Therese, 53, said: “We arrived a couple of days ago and we’ve just been settling in getting over the jet lag.

“Susan has started tests to see if she’s strong enough for the treatment and if she gets the go-ahead then we’ll be here for 35 days in total. So far, so good.

“Susan is feeling positive but the journey was very tiring. She says she feels lucky to be here, she knows it’ll be brutal but she’s just going to take it one day at a time.”

During her teenage years, Susan, of Ashington, Northumberland, was described as being full of energy.

But in the early 20s, she was forced to give up her job after being diagnosed with MS and gradually lost her mobility.

Therese, of Morpeth, said: “It has been tough watching her but over the last couple of years, she has been getting progressively worse.

“She is in terrible and constant pain, things are looking very bleak for her. We hope the treatment could make a big difference.”

The treatment sees patients given a drug that encourages stem cells to move from the bone marrow into the blood stream, and these cells are then removed from the body.

They receive high-dose chemotherapy that kills any remaining immune cells. The stem cells are then transfused back into their body to re-grow their immune system.

Results published in the journal JAMA Neurology suggested some patients suffering from MS saw an improvement in their symptoms.

NHS England said the AHSCT treatment is commissioned at specialised centres in the UK but is currently only offered to some people with MS.

Susan Timlin with Dr Guarav Kharya and his team at a hospital in New Delhi (Image: Therese Timlin)
A spokesman said: “There is not yet an adequate controlled trial of its efficacy relative to other potent therapies.

“We recommend that it is made available equitably to all people with MS, but it should only be considered for people with relapsing disease who have failed high-activity licensed disease-modifying therapies, and are prepared to accept the significant risks of the procedure and are eligible under European Group for Blood and Marrow Transplantation guidelines.”

Susan’s family has launched a fundraising page to help pay for the trip.

To donate, visit www.gofundme.com/HelpSusanStopMS .

Source: http://www.chroniclelive.co.uk/news/health/mum-heads-india-pioneering-ms-13915201

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