A charity has claimed that patients living with Parkinson’s disease in Shropshire have been left without local support due to service closures and inadequate levels of specialist nurses in the area.
Shropshire's neurology service had to temporarily close to new referrals in 2017, with health bosses saying they were unable to manage demand due to staffing difficulties.
Shropshire patients who were referred to see a neurology specialist were told they would have to travel out of the county.
Parkinson’s UK says these people often then have no access to ongoing support via a Parkinson’s nurse, at one of the most critical times in their care.
Previously there were two nurses to cover Shropshire, but this was reduced to just one when a nurse left Shrewsbury and Telford Hospital NHS Trust (SaTH) in June 2018.
SaTH says future funding for the second post would need to be agreed, but nothing can be done while the service remains closed to new referrals.
Unacceptable
Parkinson’s UK is calling for it to reopen as soon as possible and for the vacant post to be filled.
Benali Hamdache, Parkinson’s UK campaigns manager, said: “It is unacceptable that the lack of support in Shropshire is placing extra strain on patients by forcing them to travel further to get help.
"There are more than 40 symptoms of Parkinson’s, it’s an incredibly complex and fluctuating condition, which inevitably makes travelling to appointments more difficult.
“Parkinson’s nurses provide a lifeline to local people by delivering specialist support and can help to bridge the gap between seeing a neurologist."
Parkinson’s is a progressive neurological condition with no cure, and the charity says Parkinson’s nurses are crucial to supporting people affected.
Need information?
- Visit parkinsons.org.uk
Elaine Payne, 62, from Oswestry, was diagnosed with Parkinson’s in 2016.
She has been unable to access a Parkinson’s nurse since her diagnosis and only sees her consultant every six to eight months.
She said: “When you’re diagnosed with Parkinson’s it can feel like you’re left on your own, so people with Parkinson’s need someone with that specialist knowledge and care who is totally dedicated to people living with the condition.
“I really struggle with stiffness and my mobility, and I have trouble putting words together.
"The more nervous I get the worse my symptoms become, and I’m not the person I used to be.
"I would love to have access to a Parkinson’s nurse to discuss my symptoms and medication, and find out if what I’m experiencing is normal or not.
“There are so many people in Shropshire with Parkinson’s, so it seems crazy that there is only one Parkinson’s nurse, and it means lots of us are missing out on that vital specialist support.”
Funding
Since the service closed to new referrals, SaTH has been involved in talks with other organisations including the Walton Centre in Liverpool, in the hopes it can offer an outreach service in the county.
But it is not yet known when Shropshire's neurology service will be back on track.
Carol McInnes, assistant chief operating officer for unscheduled care at SaTH, said: “Our neurology service is currently suspended to new referrals and has been since March 28, 2017.
“During that time one of our two specialist nurse posts, which was funded by charitable funds, ended.
"Future funding for this post needs to be agreed and a business case has been developed to support this, however as the neurology service remains closed, the service has not seen any new activity since 2017.
“The existing specialist nurse continues to support those patients living with Parkinson’s, who were referred to SaTH prior to suspension of the neurology service.
"Patients have been offered a choice of other providers commissioned by the clinical commissioning group.”
Neurology services treat conditions affecting the nervous system, including the brain, spinal cord, nerve, muscles and their connections.
https://www.shropshirestar.com/news/health/2019/04/13/support-call-for-shropshire-parkinsons-patients-left-seeking-treatment-out-of-county/
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