Parkinson’s patient ‘in agony’ had to adjust own medication due to staff shortage

People with Parkinson’s disease are being forced to take desperate measures due to a “hidden” workforce crisis, a charity warned today.

Wendy Barnett has described how she has struggled to access help, despite being in 'agony' because of her Parkinson's disease
Wendy Barnett has described how she has struggled to access help, despite being in 'agony' because of her Parkinson's disease

One sufferer from the Black Country described how she was left in pain because she had no-one to turn to for help.

Parkinson’s UK warned 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.

Retired nurse Wendy Barnett, 64, from Stourbridge, said she was forced to adjust her own medication after struggling to get hold of a consultant when she was left “in agony”.

Ms Barnett 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.”

Parkinson’s UK said that an increase in staff numbers was desperately needed to improve care for patients. 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.”

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