Parkinson’s nurse shortage: patients ‘waiting years’ for care

People are desperate for support of specialist clinicians – with one patient saying she was left to adjust her medications herself

People are desperate for support of specialist clinicians – with one patient saying she was left to adjust her medications herself

Wendy Barnett

A retired nurse who has Parkinson’s disease was forced to adjust her own medication after being left in agony due to a ‘hidden’ workforce crisis in the NHS.

Wendy Barnett was left unable to sleep and in pain after being told to change her medication when she experienced a severe adverse reaction. She struggled to find a consultant to alter her medication regimen, so made the change herself. Now, she is says patients who are not medically trained could be in ‘big trouble’ if they are not able to consult a clinician.

‘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,’ said Ms Barnett, from Stourbridge, near Birmingham.

‘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.’

Patients are hammering on doors to get help

Parkinson’s UK has warned that people are being forced to take desperate measures because of a shortage of specialist staff.

The charity said there is a UK-wide shortfall of around 100 full-time-equivalent Parkinson’s nurses assuming an average maximum caseload of 300 people with Parkinson’s per nurse, as advised in National Institute for Health and Care Excellence (NICE) guidance.

New analysis by Parkinson’s UK found specialist shortages are so severe, some patients are waiting years for care and say they have resorted to hammering on doors in hospitals to try to find a someone who could help them.

Scale of specialist nurse shortage needs to be revealed

The charity warned a lack of essential data in monthly NHS workforce statistics is hiding the scale of the problem, and called for a fully-funded workforce strategy for the health service.

Nurses are not listed by specialty, while the number for Parkinson’s nurses is not published at all, the charity said.

Parkinson’s UK health policy and improvement lead Sam Freeman Carney said: ‘It’s appalling that there is so little publicly available official data on the NHS workforce in England. Without publishing this, little progress can be made on improving access to care for people with Parkinson’s.

‘Like others across the sector, we strongly believe there must be greater transparency by publishing detailed data on projections for the health and care workforce.’

NHS Digital, which publishes health service workforce data, said it will review the issue of gaps in statistics next year.

A Department of Health and Social Care spokesperson insisted the government in England is committed to ensuring people with Parkinson’s disease have neurological services and said NHS England is developing a long-term workforce plan.

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