Wrexham Sufferer: ‘Inequality Of Treatment For Parkinson’s Sufferers’
INEQUALITIES in services for people affected by Parkinson’s are robbing them of their quality of life, according to a new group which has won the support of a Wrexham man.
The group has already won the support of a Parkinson’s sufferer from Wrexham who is campiagning for specialist support.
In a speech to mark the launch of the All Parliamentary Party Group (APPG) for Parkinson’s disease on Wednesday, chairman Baron
ess Gale will say that people affected by Parkinson’s disease in the UK are robbed of their quality of life due to huge gaps in services to treat their condition.
Recent research by the Parkinson’s Disease Society (PDS) showed that a third of people diagnosed in the last year were not given clear information about the condition. More than a quarter of people living with Parkinson’s had never spoken to a specialist nurse whilst the majority had not been assessed for key therapies such as speech and language and physiotherapy.
Len Willet, 68, from Wrexham, has Parkinson’s disease, and his wife Helen, 65, cares for him. For the last 15 years the couple have been campaigning for local access to a Parkinson’s Disease Nurse Specialist (PDNS), which the PDS members’ survey revealed to be the number one priority for people with Parkinson’s.
In May, Len trialled a new drug which saw his tremor stop for the first time in nine years. The treatment requires the carer to daily insert and remove a syringe pump, but with no PDNS in Wrexham to train Helen, Len went without the treatment for more than 12 weeks. At the end of July, a PDNS from Birmingham arranged for the drug’s manufacturers to train district nurses who then trained Helen.
Len said: “If my wife wasn’t around to do the injection for me, where would I be then? My district nurses have said the people with diabetes come first for morning injections, and the earliest they could come would be 10 in the morning. I can’t do anything until I’ve had the injection. This is just one reason why access to a local PDNS is our biggest priority.”
Baroness Gale’s late father had Parkinson’s, and she said: “It’s been four years since standards were set by the Department of Health in the National Service Framework and two years since NICE produced the clinical guideline. These documents make it very clear which health and social care services people affected by Parkinson’s should receive. In spite of this, people with Parkinson’s are still in the unenviable position of ‘hit and miss’, when trying to access high-quality services that can help them manage their symptoms and provide the vital information and support they need.
“The APPG inquiry will investigate why these inequalities continue to exist and provide an overall picture of the scale and nature of the barriers to accessing services for people with Parkinson’s, their families and carers.”
Steve Ford, chief executive of the Parkinson’s Disease Society said: “While there has been progress towards improving access to services, the pace of change has been slow and the challenges are still enormous.