Plea for permanent Parkinson’s nurse

Carer Maureen Johnson with her husband Barry, who has Parkinson's and dementia
Carer Maureen Johnson with her husband Barry, who has Parkinson's and dementia
  • Support group launches petition
  • Carers want permanent nurse, not one-year contract
  • Supporters say specialist nurse vital for Parkinson’s sufferers

A SUPPORT group has launched a petition calling for a permanent Parkinson’s nurse for the area.

Carer Maureen Johnson is leading the campaign for the Worthing and district branch of Parkinson’s UK.

She said a Parkinson’s nurse had been put in place in 2013 for two years, after much campaigning from branch members.

The post was funded by Parkinson’s UK, in a bid to prove the need for a nurse, and it was hoped when that comes to an end later this month, Sussex Community NHS Trust would take it up and fund the post.

Mrs Johnson, of Wilmot Road, Shoreham, said: “At our branch meeting, we were told that the nurse will be funded for the next year, so what happens then?”

The petition calls on the trust to appoint a Parkinson’s nurse on a permanent contract, not a yearly one.

If you can’t get to hospital, you don’t see anyone

Maureen Johnson, carer

“After a long period of time and a lot of campaigning from the Worthing branch, we managed to have a Parkinson’s nurse put in place, which was funded by Parkinson’s UK for two years” said Mrs Johnson.

“As this funding comes to an end this March, we were looking to the NHS trust to fund the nursing post from then.

“People at the branch have fought long and hard to get this. We were under the impression the NHS would take it over after the two years.”

Mrs Johnson’s husband, Barry, has Parkinson’s and dementia with Lewy bodies, a type of dementia that shares symptoms with both Alzheimer’s disease and Parkinson’s disease.

“Unless you are touched by it, you probably would not know that in Shoreham, and the surrounding area that stretches from Littlehampton to Shoreham plus upwards, there is a Parkinson’s nurse,” she explained.

“Parkinson’s is a very complex condition which needs someone who has expertise in it to advise and understand it.

“One wonders why, when we have Macmillan nurses in most hospitals, we cannot have a Parkinson’s nurse, and we have to fight to get one at that.

“We need a Parkinson’s nurse, not on a yearly basis but on a permanent one.”

She said the branch was desperate not to be left in the same uncertain position this time next year.

“The view was that if we could prove that there is a need after the two years, the trust would fund one.

“But they have said they will fund one for a year, so I feel, what then?

“People have fought long and hard to get this and the point about the Parkinson’s nurse is that he will come out to you. If you can’t get to hospital, you don’t see anyone.”

Among those to sign the petition are Susan Phillips, who said: “I have Parkinson’s Disease and I know first hand how hard it is to do anything. People with Parkinson’s Disease need nurses who specialise in this disease.”

Others to sign include people caring for relatives, who said they were grateful for their Parkinson’s nurse and depended on them, and thought everyone with the disease should be entitled to a specialist nurse.

Francesca Capel said: “More Parkinson’s nurses are needed and more money should be given to the families to help with care.”

As well as the petition, members of the group agreed this week to write to their MPs asking for support.

A spokesperson for NHS Coastal West Sussex Clinical Commissioning Group said: “We absolutely recognise the value of having our own Parkinson’s nurse in Coastal West Sussex, and that is why we have extended the funding for this post.

“We meet regularly with Phil and the team at Sussex Community NHS Trust to talk about how the role has improved support for local patients, and we are delighted to see all of the positive comments made by those via this petition and directly from people using this service, and their carers.

“It is vital that people are able to receive the best possible care, in the most appropriate place – and this post was set up to help with this and reduce the number of people with Parkinson’s Disease who go to hospital when they could be cared for elsewhere.

“We are working with the team at SCT to clearly show the impact this post has had over the last two years, which will allow us to agree further funding.

“We have a meeting set to discuss this information with SCT at the end of this month, and we hope to have this resolved as soon as possible.”