World Parkinson’s Day
11 April 2019 | Catherine Best
It’s World Parkinson’s Day on 11 April 2019. Catherine Best, nursing lecturer at the University of Bradford, raises awareness of this disease that affects approximately 145,000 people in the UK today.
On April 11 we celebrate the anniversary of the birth in 1755 of James Parkinson.
A physician, humanitarian and social reformer, Parkinson worked tirelessly to improve the lives of the poor. He lobbied for social change and challenged the political system of the time.
He is chiefly remembered, however, for his seminal ‘An Essay on the Shaking Palsy’, published in London in 1817. Contemporary healthcare now knows this condition as Parkinson’s disease, one of the most widely known and diagnosed neurological conditions. Its estimated prevalence within the UK in 2018 makes for a disturbing read.
Parkinson’s disease mainly affects people over 50, although some will develop symptoms as early as their 30s, with devastating consequences, including social and financial, not only for the person but for their families.
Furthermore, despite significant inroads with regards to treatment, care provision and drug therapies, disappointingly there is still no cure. The timing of drug treatment is crucial in the effective management of Parkinson’s disease, as illustrated by the campaign Get it on time.
A range of symptoms present, that can impact negatively on a person’s life. The Alzheimer’s Society states, ‘Parkinson’s disease accounts for approximately 2% of all cases of dementia in the UK’. Although every person’s experience of Parkinson’s disease is unique, there are some similarities and challenges that are faced by everyone who is diagnosed with the condition.
A plethora of healthcare professionals work collaboratively to improve the health and wellbeing of those diagnosed. Joined up healthcare is essential to ensure the provision of safe and effective care in order to limit complications, including depression, stiffness, poor nutritional intake, fatigue and the side effects of prescribed medication.
With this in mind, the National Institute for Health and Care Excellence (NICE) has produced guidance that aims to inform commissioners, healthcare professionals and the general public, as well as those diagnosed with Parkinson’s disease and their carers, of the treatment regimes, resources and care pathways available.
A number of organisations exist, including the European Parkinson’s Disease Association, that not only provide guidance and information to those with a diagnosis of Parkinson’s disease, but also the healthcare workforce.
Furthermore, the charity Parkinson’s UK has done much to raise the profile of the disease including the raising of funds, the undertaking of research and the provision of learning opportunities for healthcare professionals. The aim of these initiatives is to improve the care and treatment of those with the disease, until a cure can be found.
Nurses have a vital role to play. By understanding symptoms, drug therapies and complications, they are able to help patients and families navigate service provision, as well as ensuring professional collaboration and joined-up thinking.
They can also help reassure Parkinson’s sufferers and their carers that as the disease progresses and end of life care is imminent, they will continue to provide the best care possible, demonstrating confidence and ability throughout. In order to do this, nurses must be able to recognise the signs of deterioration and improvement.
Specialist nurses are integral to providing person-centred care and generalist nurses should take every opportunity to learn from them. Disappointingly, as with many nurse specialists they are in short supply. By improving their professional knowledge of the disease and its associated symptoms, all nurses are in the position to be both advocates and care providers.
Education therefore is key. Parkinson’s Excellence Network promotes the importance of education and research and has a range of online learning options which can be completed within one hour or less and can help support revalidation for nurses. If you want to get involved then Parkinson’s UK can help you take that next step.
Parkinson’s UK’s new Parkinson’s Is campaign aims to raise awareness of this condition. The campaign has been launched in response to frustrations from supporters that the condition is viewed as “just the shakes”. According to recent research from the charity, 8 in 10 people with Parkinson’s believe that understanding is low because people don’t consider it to be serious condition – and only associate it with one symptom – a tremor.
Nurses care for patients in their own homes, in the ward, in nursing and residential homes and they will be relied upon to support patients from the newly diagnosed to end of life. Being aware of the progression of the disease and its symptoms will help build confidence and ensure that nurses provide the best advice possible, act to ensure that treatment regimens and services are delivered on time, including respite care, and that drug regimens are effectively managed. Understanding the impact of drug therapies will also help nurses to identify improvement or deterioration in the patient’s condition.
Parkinson’s disease is just one of many neurological conditions that affect patients. Being up-to-date with evidence-based practice and drug therapies may just help someone receive an early diagnosis and early treatment plans, ultimately ensuring that they have the ability to live a fulfilled life for years to come.
With thanks to Parkinson’s UK.
To find out more about the reality of living with the condition, visit www.parkinsons.org.uk
Main photograph: Parkinson’s UK