NHS can’t help me so I’m off to Russia for treatment
£40k therapy for MS patient
SINCE being diagnosed with multiple sclerosis a year a year ago, Mark Ewen has seen his health rapidly deteriorate.
He can no longer play football with his sons or join his family for a walk.
Now, facing the prospect of life in a wheelchair, the father of two plans to travel to Russia for groundbreaking treatment that is unavailable to him on the NHS.
Mr Ewen, 47, is pinning his hopes on a £40,000 therapy that has been shown to halt the progression of the disease and, in some cases, enabled paralysed patients to walk again.
He and his wife Ishbel, a 43-year-old design co-ordinator, will travel almost 2,500 miles later this month from their home in Rothes, near Elgin, Moray, to a clinic in Moscow that specialises in the therapy.
The month-long course of treatment will see him undergo a stem cell transplant and chemotherapy
‘Your world stops at that point’
in a bid to ‘reset’ his immune system.
The former joiner, who was once so fit he built his own house, told yesterday how he can now no longer walk further than 100 yards – and said he felt ‘let down’ by the health system.
He added: ‘The doctor told me I had MS and in the same breath he said there was no cure. Your world stops at that point.
‘I felt the NHS just basically left me on my own to get on with it. I am disappointed with the health system here. I am angry and disappointed at how inadequate it is.
‘All I want to be able to do is have a kickabout with my boys in the back garden, or do the simple things we all take for granted. Every day is an uphill struggle, and my symptoms will only get worse.’
Mr Ewen was diagnosed with MS after failing to recover from an ankle injury. He said: ‘I went over on it four years ago and it never cleared up. My leg was heavy, I was hobbling and I had muscle weakness.
‘I ended up being given an MRI scan and it showed I had MS. I didn’t know anything about the disease and I was just given a leaflet and referred to a nurse.
‘They said there was nothing they could do, but I thought there must be something so we started researching treatments ourselves.’
The couple were desperate to find a way of improving Mr Ewen’s symptoms so that he could take part in family life with their sons Stewart, 14, and ten-year-old Joe.
They learned of a treatment called Haematopoietic Stem Cell Transplantation (HSCT), carried out at the AA Maximov hematology and cell therapy department of the National Pirogov Medical Surgical Centre in Moscow.
An international trial has showed significant improvements, with some patients who were paralysed being able to walk again.
Mr Ewen had to give up work a month after his diagnosis. He said: ‘Hopefully this treatment will help with the tiredness and halt the progression of the disease. I am also hoping it might improve some of the symptoms.’ The Ewens are fundraising to help meet the cost of the treatment before they leave for Moscow on November 21.
Scotland has among the highest rates of MS in the world, with around 10,000 living with the condition, which causes the immune system to attack the central nervous system. The nation’s lack of sunshine is thought to be a factor.
Dr David Schley, research communications manager at the MS Society said yesterday: ‘This is an exciting area of research and we welcome the ongoing research as a potential treatment for MS.
‘However, it’s not effective for all types of the condition and, as an aggressive procedure, comes with substantial risks and requires lots of specialist aftercare. We’d encourage anyone considering it to speak to their neurologist.’
A Scottish Government spokesman said: ‘As patient safety is paramount, only once there is recognised evidence of benefit in a particular disease or condition might this be considered for wider use.’
NHS Grampian said it would not comment on individual patients.
More than £30,000 has already been donated on the family’s fundraising page www.justgiving.com/ crowdfunding/mark-ewen-3.