The campaign was started after a nurse left the Shrewsbury and Telford Hospital Trust (SaTH) in June 2018. The post has remained vacant since then.
Campaigners said that despite numerous attempts by Parkinson’s UK, alongside members from their local branches to speak to decision makers, there are no plans to improve the situation for people in Shropshire.
But the hospital trust said it was working on a new service model that could improve the situation.
Jack Grant, local campaign officer at Parkinson’s UK, said: “People with Parkinson’s have been ignored for too long. For over a year now, people have been facing cancelled appointments, long wait times or have had to travel elsewhere for care. For a complex condition like Parkinson’s that requires individualised support, this is unacceptable and cannot go on any longer.
“SaTH must decide today to replace the missing nurse. There has been no clear explanation as to why a two-nurse service has been reduced to only one.”
David Swindells, area development manager for Parkinson’s UK in the West Midlands, said: “We’re really clear that providing an inadequate service costs the NHS more money. Our research shows that a Parkinson’s nurse can save a CCG up to £250,000 a year, by preventing unplanned A&E trips and avoiding unnecessary GP and consultant visits. SaTH’s decision to only provide one nurse is a false economy.”
Nigel Lee, chief operating officer at SaTH, said: “We received funding from Parkinson’s UK for two years for a specialist neurologist nurse, and employed a nurse for that period. During the second year, we closed our service to new referrals because there is a national shortage of neurologists.
“We are working closely with the CCGs to agree a new service model, and there is a meeting at the end of October with another potential provider for Parkinson’s services and wider neurology services.”
Parkinson’s is a progressive neurological condition with no cure, and campaigners say Parkinson’s nurses are crucial to supporting people affected. As well as advising on the complex medication regimes that are crucial to managing symptoms, these nurses have been proven to save NHS money by reducing hospital admissions and consultant appointments.
Kathy Day cares for her husband Anthony who has Parkinson’s. She attended a protest outside a SaTH public meeting on October 3.
She said: “We aren’t asking for much, just a replacement for the nurse who left. When the only remaining nurse was away recently, my husband suddenly deteriorated and it was so stressful for me as a carer trying to navigate through without her support. When there were two nurses, they used to cover for each other.”
Darryl Troon, who is a younger person living with Parkinson's, said: “When we had two nurses and I was admitted to hospital, the Parkinson’s nurse would visit me and liaise with the ward about how to help me manage the condition. That close liaison helped me recover quicker, but now that nurse has left that wouldn’t happen.”