Nurses have a key role to play in supporting people with Parkinson’s

There are currently 127,000 people living with Parkinson’s in the UK, however as the condition is particularly prevalent amongst older people, this number is expected to rise due to the ageing UK population. The condition is largely managed through specialist intervention; as such the quality of support provided by Parkinson’s specialist nurses specifically has a huge impact on people who are living with Parkinson’s. In this blog, Jacqueline Young, nursing lead for Parkinson’s UK, discusses the findings of a recent clinical audit and highlights the key role nurses can play in supporting people the illness.

The results of the 2015 UK Parkinson’s Clinical Audit, the largest Parkinson’s audit to date, have now been released and it provides an insight into the quality of care provided to people with Parkinson’s across the UK. It shows that while some improvement have been made, there are still numerous areas for improvement which those of us supporting people affected by Parkinson’s urgently need to address. More than anything the Audit is a call to action, not only for nurses but for all healthcare and social care professionals involved in supporting people with Parkinson’s.

This year’s Audit reports on the care provided to 8,846 people living with Parkinson’s. As in previous years, information was collated from services including specialist nursing, neurology, geriatrics, physiotherapy and speech and language therapy. However for the first time, a Patient Reported Experience Measure (PREM) was included, obtained by directly surveying patients. This initiative allows us to gain first-hand experiences from patients.

Positively the Audit indicates many areas of good practice in nursing. The vast majority of people with Parkinson’s who completed the survey (94.1%) were able to access a Parkinson’s nurse.

We know the huge impact Parkinson’s nurses have on the lives of people living with the condition, so it is great to see this.

Parkinson’s nurse posts have demonstrated significant savings to the NHS. On average a Parkinson’s 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.

However despite these positive results, only 74.6% of people with the condition reported that they could contact their Parkinson’s nurse for advice between review appointments, resulting in a number of people with lack of access to support for significant periods of time.

While this is an issue which needs to be addressed, generalist and community nurses can also have a huge impact on the care provided to people with Parkinson’s. However, feedback from a number of generalist nurses in the community has revealed that many feel they are not qualified or specialist enough to offer the right level of care to people with Parkinson’s. It is vitally important that nurses in the community are aware of where they can seek help and support with their role in order to feel more confident about the care they deliver. One of the key places is through the UK Parkinson’s Excellence Network. As the driving force for improving Parkinson’s care, it is through the Excellence Network that professionals can get the connections and resources to implement the changes identified by the Audit.

As many of you will be aware, it’s vital that everyone with Parkinson’s gets their medication on time every time. However, sadly this doesn’t always happen, and the impact can be life altering. Worryingly, the Audit revealed that only 50% of patients reported getting their medication on time whilst in hospital. Of those who did not always receive their medication on time, 38.8% said that this had a negative or significantly negative effect on their health. This only underlines the need for professionals to do more to ensure patients with Parkinson’s get the medication they need at the right time, every time. Nurses play an absolutely integral part in this process. The Parkinson’s UK’s Get It On Time campaign provides lots of useful information and resources that can support professionals to ensure this happens with the main objective to raise awareness of medication management and correct procedures.

These results reveal a lot to be proud of but the Audit is also a call to action for nurses and an opportunity to ensure that best practice across Parkinson’s care is in a place for each and every person living with Parkinson’s in the UK. Nurses, whether generalist of specialist, hospital or community based, have a key role to play in supporting people with Parkinson’s.

Jacqueline Young

Jacqueline Young qualified as a registered nurse in London in 1988 aged 21.

She enjoyed roles on a surgical ward and on a spinal ward before becoming a District Nurse

At the end of 1996 she took on the challenge of a new role as a community Parkinson’s Specialist Nurse which was a fairly new concept at the time. She thoroughly enjoyed this role and over the year developed the post into a small team of nurses caring for patients locally with Parkinson’s

She stayed in this role for 18 years before moving 2 years ago to her current role as a Parkinson’s Specialist Nurse in a secondary care setting in Cambridge.


  1. Bernie Cork says:

    Here in North Devon we have been struggling to get adequate Parkinson’s Nurse cover for some time. I came across this blog while Goggling for alternative information. Seems like nothing has change since 2016.

  2. Kay wheatley says:

    My mother has had Parkinson’s for 11 years. We have never had a visit from a parkinsons nurse despite repeatedly asking. Our GP has asked, mums specialist, who she sees a bout once every eighteen months has asked.
    She lives with me. Her hallucinations are terrible.
    There is so little help. We live in a village on the hants/Surrey border so not really remote.
    I have managed by phone to speak to specialist who adjusted meds but mum would so benefit from an occasional visit from a nurse.