Why the NHS becoming more Parkinson’s friendly can deliver a better person-centred experience

Guest blog by Laura Cockram, Policy and Campaigns Manager at Parkinson’s UK 

Laura Cockram March 2015127,000 people across the UK are living with Parkinson’s – a progressive, neurological condition with no cure. Around a third of people with Parkinson’s develop symptoms before 65, and one in 100 before 40.

Everyone with Parkinson’s is different but it usually affects movement with people experiencing rigidity, tremor, slowness of movement and sudden freezing. However people with the condition also experience as many as 40 non-movement related symptoms which can be just as debilitating, including anxiety, depression, fatigue, pain, continence issues, memory problems and sleep disturbance.

The NHS is a key election issue for every party in the race to No.10 and Parkinson’s UK urge the new government to follow these 4 steps to make the NHS more Parkinson’s friendly and deliver a better person-centred experience.

  1. 1. Person-centred care that’s co-ordinated: Every party talks about integrated or co-ordinated care and it’s widely recognised delivering this consistently is challenging. However, the Better Care Fund has started some of this work with health and social care commissioners pooling budgets to reduce emergency hospital admissions. The lesson the new government should learn is to ensure the voluntary sector is fully involved in planning these interventions for it to truly work.

RDXXX-Election-InfographicProviding person-centred joined-up care in the community helps people to stay well and out of hospital. A recent report found people with Parkinson’s are more likely to be admitted to hospital as an emergency. The cost to the NHS for people with Parkinson’s in England alone is nearly £200 million a year – £3,338 per patient, compared to £1,417 for a planned non-emergency hospital stay.

  1. 2. Listen to people affected: We regularly hear from people with Parkinson’s and their friends and families about how they can be ignored by professionals when in hospital, usually meaning they don’t get their medication on time, suffer a deterioration in their health and possibly stay in for extended periods.

With such a complex condition where symptoms fluctuate and medication regimes are complicated (some people with the condition have to take up to 30 tablets, maybe five or six times a day at very specific times) people with the condition and their carers are usually the experts in what works to control their Parkinson’s.

The NHS constitution outlines patients and carers rights, however people with Parkinson’s and their carers don’t always experience this when in hospital. This is why we’re supporting John’s campaign so carers, friends and families are able to stay with people with dementia in hospital. To be truly effective, this must be extended past dementia and to those with Parkinson’s and other complex long term conditions.

  1. 3. Add Parkinson’s to the list of exemptions for prescription charges: We estimate just over 7,000 people with Parkinson’s in England pay for their prescriptions. However, the cost for many can be prohibitive and there’s a lack of awareness of pre-payment certificates that can be used to reduce and spread the cost of medication. Also the list of exemptions for prescription charges was last reviewed in 1968, way before numerous medications for Parkinson’s were approved.
  1. 4. Access to the full range of treatments available: Providing people with the full range of treatments to control their symptoms would enable people with Parkinson’s to take control of their condition. We are eagerly awaiting the decision in July on whether NHS England will commission Duodopa – a treatment for people with the condition where all other oral medications have failed and surgery has been deemed inappropriate.

The treatment while costly is only suitable for a small cohort of patients and has been proven effective in controlling Parkinson’s symptoms and enabling people with the condition to regain their independence and even return to work.

As part of this year’s Parkinson’s Awareness Week (20-26 April), we’re calling on the new government to make the NHS more Parkinson’s friendly and deliver a better person-centred experience.

And we have staff across the UK poised to work with commissioners and professionals to advise where these improvements could be made.

To find out more about how you can support Parkinson’s Awareness Week, or our campaigns, visit www.parkinsons.org.uk

About Julia Manning

Julia is a social pioneer, writer and campaigner. She studied visual science at City University and became a member of the College of Optometrists in 1991, later specialising in visual impairment and diabetes. During her career in optometry, she lectured at City University, was a visiting clinician at the Royal Free Hospital and worked with Primary Care Trusts. She ran a domiciliary practice across south London and was a Director of the UK Institute of Optometry. Julia formed 20/20Health in 2006. Becoming an expert in digital health solutions, she led on the NHS–USA Veterans’ Health Digital Health Exchange Programme and was co-founder of the Health Tech and You Awards with Axa PPP and the Design Museum. Her research interests are now in harnessing digital to improve personal health, and she is a PhD candidate in Human Computer Interaction (HCI) at UCL. She is also dedicated to creating a sustainable Whole School Wellbeing Community model for schools that builds relationships, discovers assets and develops life skills. She is a member of the Royal Society of Medicine’s Digital Health Council. Julia has shared 2020health's research widely in the media (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions & Victoria Derbyshire, BBC Radio 4 Today, PM and Woman's Hour, LBC) and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week.
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