People with Parkinson’s disease are being forced to take desperate measures due to a “hidden” workforce crisis, a charity has warned.
Parkinson’s UK warned that workforce shortages among specialist staff mean that some patients are waiting for “years” for care.
Patients have described hammering on doors in hospitals trying to find a medic who can help them while others have been forced to adjust their own medication after failing to contact specialist teams after multiple attempts.
Analysis by the charity concluded that health service staffing levels have been so low that patients are often waiting years to be seen by health professionals.
A retired nurse said she was forced to adjust her own medication after struggling to get hold of a consultant when she was left “in agony”.
Wendy Barnett, 64, from Stourbridge in the West Midlands, was unable to sleep and in pain after being told to change her medication.
She had a severe reaction and was unable to get in touch with her clinicians so made the change herself.
Ms Barnett, who was diagnosed with the condition five years ago, said: “Parkinson’s is a fluctuating condition – when it’s not right you need to talk to someone quickly about it, but no-one gets back to you.
“I tried to contact a consultant, but couldn’t get one. I left a message, the mailbox was full. How long were those messages on there? What if there was an urgent message on there? It’s a nasty scenario.
“Being a nurse I knew how to reduce that medication, but if you aren’t a nurse and don’t hold that medical knowledge, you are in big trouble if you can’t get hold of anyone.
“GPs often don’t feel confident making adjustments to Parkinson’s medications as it’s a specialist area.
“I would still be waiting and be in absolute agony, while taking medication that is no good. And that is dangerous. You shouldn’t have to go through all this just to get help.”
A retired secondary school teacher said he has had to learn how to live with his Parkinson’s diagnosis on his own as he has been “pushed from pillar to post” in the healthcare system.
Gary Berry, 60, from Shepperton, Middlesex, told the charity he has not been able to see his neurologist for almost two years.
“Parkinson’s is a very complex condition and we need to be able to reach out and see healthcare professionals when we need to. I can never get an appointment with my GP,” he said.
“I’ve learnt how to manage my Parkinson’s on my own through keeping fit and regular exercise, eating a nutritious and varied diet, and expressing my emotions through my poetry.
“But it’s not good enough, the support system from the NHS is so inconsistent and I feel like I’m left to navigate this condition on my own.”
Meanwhile, a carer from Suffolk told the described the difficulties she faces when trying to get help for her brother-in-law.
The 67-year-old from Suffolk, who did not wish to be named, said: “If I don’t hear back after calling a health professional for help I go round to the hospital and bang on the door.”
Parkinson’s UK said that an increase in staff numbers was desperately needed to improve care for patients.
It’s appalling that there is so little publicly available official data on the NHS workforce in England. Without publishing this missing data, little progress can be made on improving access to care for people with Parkinson’s— Sam Freeman Carney, Parkinson’s UK
The charity said that a lack of essential data in monthly NHS workforce statistics is hiding the scale of the workforce problem across the health system in England.
It has launched a new campaign calling for better care for patients across England called Can’t Wait.
As part of the campaign, Parkinson’s UK called for a fully-funded workforce strategy for the health service, which includes the publication of detailed data on the NHS workforce, with projections of staff numbers needed to meet future demand.
Sam Freeman Carney, health policy and improvement lead at Parkinson’s UK, said: “It’s appalling that there is so little publicly available official data on the NHS workforce in England. Without publishing this missing data, little progress can be made on improving access to care for people with Parkinson’s.
“We are calling for the UK Government to grow and upskill the Parkinson’s workforce to better support people with the condition.
“Like others across the sector, we strongly believe there must be greater transparency by publishing detailed data on the current and future projections for the health and care workforce.”
A Department for Health and Social Care spokesperson said: “We are committed to ensuring all those with Parkinson’s receive the care and support they need, including access to specialist neurological services where appropriate.
“We have commissioned NHS England to develop a long-term workforce plan to recruit and retain more staff, while also building the NHS workforce – with 3,700 more doctors and over 9,100 more nurses working across the service compared to last year.
“NHS Digital will be undertaking a review of workforce statistics – expected to begin next year – which will include looking at current gaps in data.”
