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“We must strive to see the patient, not just the condition”

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Emergency hospital admissions account for 55% of admissions from Parkinson’s disease, giving an average hospital stay of 23 days

One of my key aims as a Parkinson’s nurse specialist is to help people with the condition avoid being admitted and so improve their quality of life. I work in a rural area giving support and advice via community clinics, drop-in centres and home visits.

From reviewing the literature I have found the main reason for hospital admission is infection, in particular urinary tract infections. Once in hospital, patients with this disease often continue to deteriorate due to problems with medication distribution, such as not getting their anti-Parkinsonian drugs administered on time.

Infections, for the most part, if detected promptly and treated appropriately, should not lead to a hospital admission. We must ask ourselves: what is going wrong? I propose one of the reasons for this is the culture of “blaming it on the Parkinson’s”. It is easy to refer to the specialist nurse when a patient is deteriorating, but is this the right course of action? Instead should health professionals take responsibility to rule out any underlying organic treatable causes first? The Parkinson’s disease nurse specialist is not always best placed to screen for infections; this means the patient is adversely affected by being passed back and forth between different professionals. Or, as we are striving to empower patients, should the responsibility lie with them?

The drive for patient empowerment is a key objective of the modern NHS. Part of that vision is that everyone with a long-term condition has a personalised support plan, which empowers them to gain the necessary knowledge and skills to take control of their own care and recognise when there is a change to their condition that needs intervention. This transfer in responsibility will help to improve the quality of life for people with long-term conditions, as well as potentially producing significant cost savings, particularly in relation to emergency hospital admissions.

I believe the key to changing this general perception is education along with a clear pathway to follow in the event of an acute deterioration in symptoms. To that end I have designed a pathway for health professionals to refer to when faced with a sudden deterioration in Parkinson’s disease symptoms. I have also adapted the pathway for patient use.

The aim of both pathways is to ensure that any underlying causes for deterioration are diagnosed quickly and treated appropriately. My hope is that this will not only reduce hospital admissions associated with organic causes but will improve quality of life by avoiding unnecessary hospitals admissions. People with Parkinson’s disease will feel empowered as they will know what to do if their symptoms exacerbate. Hopefully, in time, this innovation will help to shift the culture towards one where a person who has Parkinson’s disease is seen as a person and not just as the Parkinson’s disease itself.

Laura Barnes is Parkinson’s nurse specialist at Peninsula Community Health.

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