Worthing woman attends Parkinson’s disease networking event

Parkinson's disease event at parliament, Donna O'Brien, Barbara Lee and Rebecca Harris MP
Parkinson's disease event at parliament, Donna O'Brien, Barbara Lee and Rebecca Harris MP

AN elderly Worthing woman went to a networking event in Parliament to benefit the carers of people with Parkinson’s disease.

Barbara Lee, 81, was at the speed networking event to meet MPs on June 15, as part of national carers week. She made a heartfelt plea for politicians of all parties to recognise the value of Parkinson’s nurses in supporting carers and to increase understanding of the challenges that carers face.

Parkinson’s UK has been working with NHS West Sussex since 2009 to try to secure a nurse for the area, but in November, 2010, the post was put on hold by the newly-appointed Coastal West Sussex GP consortium.

Barbara was part of a delegation of people affected by Parkinson’s who handed over a 1,200-signature petition at a public board meeting of NHS West Sussex, calling on the Coastal West Sussex GP consortium to honour the decision made last year by the PCT to secure two new Parkinson’s nurse posts for West Sussex.

Barbara, of Heene Road, said “My message to MPs was simple. These nurses are a lifeline. They provide the information, the education and one point of contact that a carer needs.

“My life is one where I get three hours of respite a week from a 24-hour job and where I’m expected to just get on with it and deal with a complex medical condition. If I knew there was an expert nurse at the end of the telephone, my life would improve immeasurably.”

Parkinson’s UK has offered Coastal West Sussex GP consortium two years of funding – around £90,000 – to help get a Parkinson’s nurse for Worthing and surrounding areas.

Barbara and others affected by Parkinson’s are now awaiting the outcome of a meeting of the charity with the GP consortium due to take place at the end of this month.

Worthing West MP Sir Peter Bottomley has shown his support for Parkinson’s nurses in West Sussex.

He said: “I have asked and hope the West Sussex health commissioners decide to fund and use specialist nurses for the benefits of people, patients and carers, living with Parkinson’s. Specialist training and experience are vital.

“Barbara Lee is to be valued for her caring and admired for bringing the campaign to Westminster.”