MULTIPLE sclerosis patients are missing out on a potentially life-changing stem cell treatments granted to dozens of people living in England amid confusion over funding and referrals north of the Border.

Scotland is blighted with some of the highest rates of MS in the world but no patients have gone forward for the treatment – known as AHSCT –- in the last five years, according to figures obtained by The Herald.

During the same period, at least 59 MS patients in England have undergone the procedure which uses aggressive chemotherapy to strip away the immune system before replenishing it with stem cells harvested from patients’ own bone marrow.

AHSCT (Autologous Haematopoietic Stem Cell Transplantation) procedures were carried out at hospitals in Sheffield and London - where clinical trials are ongoing - but the 59 patients treated were funded by the NHS and were not participants in a clinical trial.

The true figure is likely to be higher, however, as King’s College Hospital Foundation Trust said it had “received a number of referrals” but did not hold data on how many actually went ahead.

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Some patients have reported life-changing reversals in symptoms, from being in a wheelchair to being able to walk again.

The treatment is available overseas, in countries including Russia, Mexico and Israel, but is still considered “experimental” by UK authorities.

It has recently also become available privately in London, but at a cost of some £100,000 – considerably more than the cost abroad.

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In Scotland, health boards are able to refer potential candidates via the National Services Division on an ad hoc basis if their clinicians believe they may be suitable. The criteria used by NHS England is extremely strict, so the vast majority of MS patients will not qualify.

It will consider certain individuals with relapsing MS – not progressive – who have failed to respond to drug treatments, are eligible under European Group for Blood and Marrow Transplantation (EBMT) guidelines, and who “are prepared to accept the significant risks of the procedure”.

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If accepted, NSD will pay NHS England for the cost of treatment.

However, in the past two years NSD said it had received only one application which was “referred back to the health board for further review”.

Responding to Freedom of Information requests, only one health board – NHS Forth Valley – said it had referred an MS patient since 2012 to be considered for a stem cell transplant.

The patient was subsequently ruled unsuitable, meaning the procedure did not go ahead.

In other cases though, patients are being told that funding is simply not available, regardless of whether they might qualify.

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Cezara Simpson, from Dyce in Aberdeenshire, said she has repeatedly asked her neurologist in NHS Grampian about a potential referral to England since being diagnosed with relapsing MS in 2016. She was told no funding was available.

HeraldScotland: Barry McArthur, from PaisleyBarry McArthur, from Paisley

A spokeswoman for NHS Grampian said it offered patients “a range of other effective treatments”.

Barry McArthur, 34, from Paisley, raised nearly £40,000 to undergo AHSCT privately in Mexico last May.

His GP and neurologist wrote twice to NHS Greater Glasgow and Clyde requesting referrals but Mr McArthur said he gave up after the health board said it could not fund an “experimental” treatment.

However, NHSGGC insists that it would consider referrals for “out of area treatments” on a case-by-case basis “depending on the supporting circumstances detailed from the referring clinician”.

Average prevalence of MS is around 209 per 100,000 in Scotland, compared to 164 per 100,000 in England, but rises to as much as 229 in Aberdeen and 402 per 100,000 in Orkney, suggesting that at least some successful referrals should have progressed in Scotland if the referrals are operating correctly.

Rebecca Duff, head of policy and communications for the MS Society Scotland, said: “We believe that everyone living with MS should have access to appropriate treatments at the right time regardless of where they live.”

She added: “Research shows that HSCT holds the most promise for people who are having regular MS attacks lasting for weeks or even months.

“But this intensive treatment is also high risk and comes with potential side effects like hair loss, nausea and fever.

“More research into this treatment - particularly trials comparing HSCT with the most effective [disease modifying therapies] – are needed before it’s made more widely available on the NHS.  

A spokeswoman for the Scottish Government said: “NHS Boards can commission treatment in other countries on an ad hoc basis, particularly where a highly specialised service is involved.

"Clinical assessments and referral criteria for particular treatments are vital to ensure that patient safety remains paramount."

A spokeswoman for NSD said: “Autologous stem cell transplantation is a highly specialised treatment which is commissioned in the UK by NHS England, after consideration by a multi-disciplinary team.

"If a referring health board in Scotland, in consultation with the Scottish Stem Cell Transplant team, recommends that a patient is suitable to receive this specialised treatment, an application is made to NSD and a decision is made on the basis of the clinical information provided in the application.”