Parkinson's Nurses

Parkinson's Nursing:

From both sides

See Arthur Hookway and Amanda Hulejczuk talk together about the difference Parkinson's nursing has made to them. Arthur describes how his world would be without his Parkinson's nurse, and Amanda describes her experience as a nurse and the connection she has with the Parkinson's community. This short film has been created as part of a celebration of 35 years of Parkinson's nursing.

Everyone should see a Parkinson's nurse at least annually to supplement the visits to your neurologist as they look at different aspects of your care. Parkinson's nurses are general nurses with specialist experience, knowledge, and skills in Parkinson's. They play a vital role in caring for people with the condition, as well as offering information and advice to families of people with Parkinson's.

A large part of the role is helping people to manage their medication, so they get the best results and fewer side effects. They can make referrals to other professionals such as speech and language therapists and physiotherapists. Contact your GP or your neurologist if you do not already see a Parkinson’s nurse.

What is a Parkinson's Nurse (Parkinson's Nurse Specialist)?

Parkinson’s nurses are trained specialist nurses who work solely with people living with Parkinson’s disease. They have deep knowledge of both motor and nonmotor symptoms and support patients throughout their journey.

They play a key role in medication management, helping patients get the greatest benefit while minimizing side effects. Where qualified, they can also prescribe or adjust medications.

Their support extends to psychological and social aspects—helping people come to terms with diagnosis, involving carers or family members in consultations, and coordinating with other professionals.

Roles & Settings - Where they work

Parkinson’s nurses operate in multiple settings across the UK:

Hospital settings: Many run nurse-led clinics and act as advocates for patients in general wards, ensuring hospital staff are aware of the importance of medication timing and understanding of the condition.
Community and GP surgeries: Nurses may lead community clinics, conduct home visits if needed, and offer telephone/video services for remote support.
Multidisciplinary teams (MDT): Frequently part of broader teams involving physiotherapists, speech and language therapists, occupational therapists, and psychologists.

Key Responsibilites

Medication reviews & timing: Ensuring medications are taken on time—especially critical in hospital settings—and adjusting as needed. Many nurses serve as nurse prescribers.

Holistic assessments: Evaluating both motor and non-motor symptoms, offering education and signposting to supports like speech therapy or exercise.
Education & advocacy: Training other health professionals (e.g. ward staff) on Parkinson’s care and supporting campaigns like Parkinson’s UK’s Get It On Time initiative.
Emotional & peer support: Working closely with patients, carers, and families—often offering ongoing relationships over many years.

What if there's no nurse in my area?

PUKs campaigning work has achieved good nurse coverage in many areas of the UK.
However, people in some areas still have little or no access to a Parkinson's nurse. Changing this is a priority for them. This is why they launched their Nurse Appeal to fund more Parkinson’s nurses
and healthcare professionals. Find out more about our Nurse Appeal.
As of July, with your help, they’ve raised £4m of the £9m target. This is the equivalent of paying for around 33 new specialist roles to be pump-primed for two years.
If you have recently been diagnosed with Parkinson's and there isn't a community-based Parkinson's nurse in your area, you may want to check what nurse support is available at different hospitals close to you.
The referral process is not always straightforward. If you have any questions about the referral process, call their free confidential helpline on 0808 800 0303. An adviser can help you find out more about the situation where you live.
In a few cases, where the nurse is new in their post, they may not start seeing patients straight away as they work to establish their practice.

Finally, if you haven’t seen it yet, please check out Arthur’s interview about Parkinson’s nurses on our website.