Parkinson's disease grandad denied 'wonder drug' that could reverse years of damage on his body

• 15:21, 23 February 2015
• By Antonia Bannister

Edward Reilly has been told the NHS will not pay for him to at least try the breakthrough drug Duodopa which could ease his symptoms

A Parkinson's disease sufferer has been denied access to a so-called wonder drug that could reverse the effects of years of damage on his body.

Edward Reilly, known to his friends as Eamonn, was diagnosed with the progressive disease 16 years ago.

The Coventry grandfather has now been told the NHS will not pay for him to at least try the breakthrough drug Duodopa which could ease his symptoms.

Duodopa – which is only prescribed as a ‘last resort’ treatment option where other medications have failed – is said to help control involuntary movements, night-time symptoms and help curtail 'off' periods.

But last year NHS England announced the drug would not be routinely available on the NHS, meaning doctors have to make long and bureaucratic applications on a case-by-case basis.

At present Eamonn, from Eastern Green, suffers with near paralysis at night, reports the Coventry Telegraph.

Suffering: Eamonn and Carol with the letter from the NHS

His wife Carol said: “He hardly moves after 8.30pm. He also has a lot of off time when he can’t move his legs.”

The cost of treatment using Duodopa for one year would be £26,000.

Duodopa is a last resort treatment for Eamonn who has been declared unsuitable for all other treatment, due to his poor balance which has seen him hospitalised before.

But when applying for funding for the drug, the 71-year-old was told that his situation was not exceptional enough to warrant the NHS paying for his treatment.

Carol said that trialing Duodopa is their last hope and could be ‘life-changing’ for her husband.

She said: “It would mean he could go and see his grand-daughter in her shows.

“At the moment due to access and him not being able to get comfortable he can’t see her perform anymore.”

The couple are being backed in their fight by local politicians.

Councillor Steven Thomas, whose own grandfather suffered with Parkinson’s Disease,has championed the case.

Carol said: “I saw Councillor Thomas at a carol concert and told him about what had happened.

“He just picked up the ball and ran with it.”

Coun Thomas, who is chair of the city’s health and social care scrutiny board, said: “Eamonn's case is one of the worst I have ever encountered of scientific advances providing hope to patients, only for NHS rationing to snatch it away.

“Eamonn and Carol have worked hard all their lives to contribute to the NHS, only to find that they've been badly let down when they need to get something in return.”

Geoffrey Robinson, Labour MP for Coventry North West, signed a parliamentary early day motion to have the issue of access to Duodoba for Parkinson's sufferers discussed in the House of Commons.

Carol and Eamonn are now exploring any other avenues they may have on how to gain access to the drug. Carol said: “If anything we just want to raise more awareness about Parkinson's.”
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