Eastbourne Parkinson’s group says more specialist nurses are needed or ‘there will be chaos’

Eastbourne’s Parkinson’s Choir is for people affected by Parkinson's (PD), including partners, carers, and family. The group is run by a professional singing teacher and meets weekly to sing, with monthly public performances.

PD nurses provide expert care because they only work with people with the condition. They can also support people coming to terms with their PD diagnosis. A large part of the role is helping people to manage their medication, but they also make referrals to other professionals and train other health and social care professionals.

What is Parkinson’s?

A spokesperson for the group said the trust recently lost its only PD nurse for Eastbourne/Seaford/Hailsham and it needs to employ two ‘immediately’ or ‘there will be chaos’.

They said: “It is a particularly a hard time for anyone in Eastbourne who has PD because we said goodbye to our lovely PD nurse who battled for so long to look after each one of us but in the end surrendered and left because she could not cope without help in looking after over 700 PD sufferers without the trust employing a second PD nurse. Every PD sufferer loved her but everyone understands why she left.

"PD nurses are so important to every PD sufferer because they develop a special relationship with each patient. PD is a complex neurological disease – it is progressive and degenerative and needs constant monitoring by an experienced clinician who understands the detailed regime of drug treatment used to treat this disease. Without our PD nurse we would all be lost. PD nurses become like family members. They take care of us from first diagnosis until we leave this world.”

Choir member Elspeth Roberts said: “I can’t explain how crucial our previous PD nurse was to my everyday life – her support has got me through some tough times, she knows everything about medication and I could phone text or email and get an immediate reply, she was one of the most caring people know but in the end the overload of patients was preventing her from providing the care she wanted to.”

Huw Farmer, another choir member, said: "The role of the PD nurse in the community is pivotal to the management of PD disease symptoms. In many instances there will only be medical specialist available in a given district with the appropriate training and experience to treat this condition. Many GP’s and A&E doctors do not have the training or experience to make vital PD medication choices, relying on the PD nurse expertise for guidance and advice.

"The loss of our PD nurse has impacted the Eastbourne PD community very hard. This has and still is causing considerable distress to patients, in particular those being newly diagnosed or in the process of being diagnosed. They are desperate for help - not knowing what to do and how to get help!”

Katherine French, service improvement programme manager at Parkinson's UK, said a job advert was posted in January and the trust has now recruited for the role. The new PD nurse will start on March 20.

She said the nurse will need to undergo training so the trust is offering evening clinics with another PD nurse from March 8-July 31 to support patients.

Ms French said: "We know how important having access to a PD nurse is for people with PD and their families. We also recognise that the current workforce issues around recruitment and retention are making it challenging in some areas to recruit to PD nurse posts.

"We work closely with providers to look at how we can support them to attract candidates to this highly specialist role, including promoting the role of the nurse, job shadowing and looking at trainee posts. We also invest millions in pump priming posts, developing and supporting hundreds of PD nurses, as we know how vital they are for our communities."

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