One in four people with Parkinson's struggles to contact specialist nurse between appointments, audit finds

While the majority of people with Parkinson’s disease have a specialist nurse, many struggle to access them between appointments, according to a national survey.

The 2015 UK Parkinson’s Audit, which reports on the care of more than 8,800 people with the progressive neurological condition, found that 94% had access to a Parkinson’s nurse.

But only 75% could contact them between appointments, meaning long gaps without support.

The audit also found that only 50% of patients reported getting their medication on time in hospital.

Of the more than 430 services involved with the audit, only 13% offer a fully integrated service.

Jacqueline Young, nursing lead for the UK Parkinson’s Audit said it was encouraging that so many patients had access to a Parkinson’s nurse.

‘Parkinson’s nurse posts have demonstrated significant savings to the NHS,’ she said. ‘On average a nurse can save £43,812 in reducing the number of consultant appointments, £80,000 in unplanned hospital admissions and £147,021 in days spent in hospital by providing care in local settings. All this maintains patients’ quality of life, while ensuring costly emergency hospital admission and crises are kept at a minimum.’

Ms Young said the audit was a ‘call to action’ to ensure that the almost 130,000 people with the condition in the UK receive the best care.

Annette Hand, a Parkinson’s nurse at Northumbria Healthcare NHS Foundation Trust, said that services are being stretched as patient numbers go up, but investment reduces.

‘Nursing is a key part of managing people with Parkinson’s and it is struggling as many specialist nursing posts have been cut,’ she said. ‘It is challenging when you want to provide more care proactively rather than problem solving or fire fighting. We have more patients than we had five years ago. We have got a long way to go.’

Ms Hand is currently leading research into the experience of people with Parkinson’s in care homes and says that staff knowledge on the condition can be low.  With specialist nurses often covering up to 40 care homes spread over a large geographical area, with two or three patients in each, it can be difficult to provide services to all. ‘I would like to see standards for homes if they are going to say they are specialists in Parkinson’s,’ she says.

Further information

Parkinson's UK audit