A POTENTIALLY life-changing new treatment for Parkinson's just approved for use on the NHS in Scotland has been welcomed by Ayrshire families, who say that those suffering from the disease are "crying out for help".
Medics state that Lecigon - already available for people with advanced Parkinson’s in England and Wales - can alleviate some of the more severe symptoms of the illness.
An infusion of Parkinson’s medication, a wearable pump delivers the treatment through a permanent tube into the intestine, and it could help people who experience severe movement symptoms that are poorly controlled by standard Parkinson’s medications.
Debbie Houston, who runs the Perky Parky Cafe in Largs once a month and whose 92-year-old Millport father Jim attends, says the new drug could be of real benefit - if the health board agrees to issue it.
And she has urged NHS Ayrshire and Arran to start prescribing Lecigon after it was approved by the Scottish Medicines Consortium (SMC).
She said: "People with Parkinson's are crying out for help.
"My dad Jim, who is 92, was diagnosed with Parkinson's six years ago, though he probably had it before that. For someone who has it, this drug could make a real difference.
"There's a lack of help from the health board. There is one consultant based in Prestwick, covering all the way up to Largs. It is really bad.
"I would be really upset if the health board didn't agree to issue this new drug, because people are really struggling.
"My dad suffers tremors, but he's still sharp as a tack, but others who have Parkinson's are in a far worse state. You can see it at the meetings. Anything that can help them with the symptoms would be welcomed."
Another Parkinson's sufferer from Ayrshire, Diane Mitchell, said: "For Parkinson's medication and the NHS, I think it's a postcode lottery.
"There are a few drugs refused to us because they are expensive and I personally think when you get to a certain stage of Parkinson's you're just not seen as worth the investment.
"This new drug, as far as I'm aware, includes a big operation to fit a pump into the stomach. They just don't think it's worth the risk but people with Parkinson's are - mostly - happy to be guinea pigs.
"It's also down to what your consultant thinks. I have had DBS [deep brain stimulation], which is really expensive and not offered to everyone. It has been life-changing for me."
Parkinson's is a progressive neurological condition, where people don't have enough of the chemical dopamine in their brain.
It is estimated that by 2050, the number of people with Parkinson’s worldwide will double to 25 million.
Debbie, from Millport, said: "I set up the Perky Parky Cafe once a month as a support network for those who have Parkinson's and their families.
"We meet in the Clark Memorial annexe from 2-4pm on the last Thursday of the month.
"Parkinson's UK Scotland have been a real support and we have invited the Parkinson's nurses along to the meetings. It can be really difficult to get answers and help sometimes from medics."
The charity Parkinson’s UK Scotland said that NHS boards need to act now to ensure that people can benefit from life-changing treatments when they are approved.
James Jopling, director at Parkinson’s UK Scotland, said: “Most people with Parkinson’s manage their condition with standard medicines. But what works for one person may not be effective for someone else.
"Having access to the full range of treatments is essential. Lecigon will hopefully give healthcare professionals another tool in the box to manage challenging symptoms.
"The last advanced Parkinson’s medicine was approved in Scotland over two years ago. But there are only a handful accessing it.
"NHS boards need to resource Parkinson’s teams properly so that they can deliver effective treatments to those that need them.”
The Ayrshire Parkinson's Group meet monthly in the Redburn Community Hub in Irvine - with 50 to 60 members regularly taking part. Other local groups and support networks are also available.
An NHS Ayrshire and Arran spokesperson said: "NHS boards in the west of Scotland are in the process of developing a regional formulary.
"The section of the west of Scotland formulary that includes medicines for the treatment of Parkinson's disease is currently under development and, now that it has been approved for use in Scotland by the Scottish Medicines Consortium, Lecigon will be one of the medicines considered for inclusion.
"There are safety and service considerations to be taken into account as part of the decision-making process, as well as consideration of its place in the context of other medicines available."
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