Specialist Parkinson’s nurse for Worthing after campaign

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POWER of the people has won the day as news of the appointment of a specialist Parkinson’s nurse for the Worthing area was announced.

Members of the Worthing branch of charity Parkinson’s UK have spent months tirelessly campaigning for the much-needed nurse to be hired, even presenting a 1,200-signature to health bosses.

Now, the GP consortium for Coastal West Sussex has agreed to appoint a specialist Parkinson’s nurse to help more than 600 patients, their families and carers in the area.

Apple Holden, who was diagnosed with Parkinson’s four years ago and was an integral part of the campaign, was overjoyed at the news.

The 67-year-old, from Storrington, said: “When I was diagnosed with Parkinson’s, my husband was already unwell and then he deteriorated and I lost him 18 months ago. Not only was I coping with Parkinson’s, but I was his full-time carer. It was just a horrendous time.

“When I saw my Parkinson’s specialist nurse, I had to travel all the way to Haywards Heath, so I had to drive there, but she was just so good and helped me through that time.”

She added: “After I lost my husband, I became very aware that quite suddenly I was on my own. Should my condition deteriorate, and I became unable to drive or be so active, what would I do then?

“It was then I got involved with the campaign, because it was a very scary position to be in.

“So, I am absolutely thrilled about the appointment of the new nurse, not just for me, but for others who are already in the position where they can’t get around.

“The nurse will be able to come to them, and they’re so experienced and knowledgable, it’s just going to be a life-saver for them.”

West Sussex Primary Care Trust originally agreed to fund two Parkinson’s nurses for the county – one in the north and one in the south – but then the consortium put the role in the south on hold.

It was after the Worthing members of Parkinson’s UK stepped up their campaign, even visiting a networking event in Parliament, that they finally gave the role the go-ahead again.

Another campaigner is Barbara Lee, who is the full-time carer for her husband and Parkinson’s sufferer Richard, 82.

Barbara, 81, of Heene Road, Worthing, said: “It’s absolutely wonderful news. We are so excited about it. Everybody worked so hard to try to get this to happen, so it really was a team effort.

“I went to Parliament about this issue, and I spoke to our MP Peter Bottomley as well as 10 others, and they asked a lot of questions and were supportive of the issue.”

She added: “For us, having the nurse will hopefully mean home visits, and also the knowledge that somebody is a phone call away to provide advice and information.

“Parkinson’s is such a terrible and progressive disease and causes all types of problems. It will be nice to have a nurse to provide education and training for me, and she will be the vital link between all the professional bodies involved in the treatment of Parkinson’s.”

Parkinson’s nurses are frontline staff that save the NHS money by designing innovative services that reduce demand on consultant time, hospital admissions and time spent in hospital.

They also help people manage their medication, offer advice and information about living with Parkinson’s and give emotional support to both the person with Parkinson’s and their family or carer.

Sir Peter Bottomley, MP for Worthing West, welcomed the news. He said: “This is a welcome, proper and necessary decision.”