1. Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff

Dr Rowan Wathes, Associate Director of the Parkinson's Excellence Network at Parkinson's UK, recommends four key actions that healthcare workers can take to improve safety for people with Parkinson’s while they are in hospital.

2. Parkinson's UK: Parkinson's Away-From-Home Kit

This kit  from the Parkinson's UK Excellence Network comes from 3 years of collaboration with people with Parkinson’s and carers to understand the challenges they face when going into hospital and how we can help. People with Parkinson’s can choose from a range of tools to create a kit that works for them. Every item is designed to support them, and those who care for them, to advocate for their Parkinson's medications to be administered on time, every time.

3. Nurses leading the way: enhancing Parkinson's care in nursing homes

In this blog published by the Royal College of Nursing, Jean Almond, Programme Manager at Parkinson's UK, discusses improving the delivery of time critical Parkinson’s medication to care home residents.

4. Preparing to go into hospital – tips for people with Parkinson's and their carers

In this blog, Laura Cockram, Head of Policy and Campaigning at Parkinson's UK, talks about how people with Parkinson’s can prepare their medication to go into hospital.

5. Time-critical Parkinson’s medication: the human cost of delays and mistakes

In this blog, Joanne explains how delays to her mother’s time-critical medication in hospital led to her condition deteriorating. 

6. Time critical medication guides for health professionals

The Parkinson’s Excellence Network has produced three practical guides to support UK health professionals to deliver time critical Parkinson’s medication on time in hospital: a guide for NHS ward staff, a guide for hospital pharmacists and a swallowing guide for the nurse in charge and ward staff.

7. Electronic prescribing: how it can improve the delivery of time critical medications 

This resource describes how NHS Ayrshire & Arran hospitals improved their rates for administering patients' Parkinson's medications on time, sharing case studies and tips on how other hospitals might be able to replicate their successful e-prescribing system.

8. Improving the delivery of time critical medications at Bradford Teaching Hospitals NHS Foundation Trust

A best practice case study showcasing a quality improvement project at Bradford Teaching Hospitals NHS Foundation Trust.

9. Ask the expert: How to spot fake Parkinson’s medicines online

Falsified, fake or counterfeit medicines are medicines disguising themselves as authentic, and they can pose significant health risks. This blog highlights the issue of counterfeit Parkinson's medications being sold illegally online. Mike Isles, Executive Director of the Alliance for Safe Online Pharmacy in the EU describes their high prevalence and gives tips for people with Parkinson's on how to stay safe when buying medicines online.

10. My Parkinson's passport

This tool from the Parkinson's Association of Ireland allows people with Parkinson's to record their essential medical information in an easy to access format, should they need assistance or medical treatment.

11. Parkinson's awareness: a 15-minute online presentation for ward staff

This 15-minute training video by the Parkinson's Excellence Network pulls together the key symptoms and issues that can affect a person with Parkinson's and their care when admitted to a hospital ward. It aims to help ward staff understand the most important considerations when caring for people with Parkinson's.

12. Medication delays: A huge risk for inpatients with Parkinson’s

This blog examines the serious health implications of delayed medication in people with Parkinson’s. It highlights evidence that this is a widespread safety issue and outlines the challenges, barriers and solutions to ensuring patients receive their medication on time.

13. Parkinson’s UK Tech Guide

Parkinson’s UK created the Tech Guide so that people with Parkinson’s, and their families, friends and carers, can make the right decisions for themselves about all the devices and apps that claim to be able to help improve their quality of life. To do this, they provide trusted reviews based on the lived experience of people with Parkinson’s, and maintain a catalogue of the various products that are on the market. This is backed up with information about Parkinson’s and evidence-based articles that will help you decide what’s right for you, in your unique circumstances.

14. NHS Northumbria Healthcare: Improving the care in hospital for people with Parkinson’s

In this blog, consultant geriatrician, Dr James Fisher, talks about a project at NHS Northumbria Healthcare to improve the experience of Parkinson’s patients by focusing on medication.

Have your say

• Are you a healthcare professional who works with people with Parkinson’s? We would love to hear your insights and share resources you have developed.
• Do you have, or do you care for someone with Parkinson’s? Please share your experience of health and care services with us.

We would love to hear from you! 

• Comment below (register for free here first).
• Get in touch with us directly to share your insights.

1. Transformation for ADHD requires systemic changes at national, regional and local level. This includes government departments, health, education, employment and the criminal justice system. Co-design and co-production of transformation should include people with ADHD and their families/carers.
2. A combination of (a) upstream, preventative and early support strategies, (b) cross-sector changes and (c) downstream changes to ADHD service commissioning and provision is required.
3. Early years support needs to encompass family outreach and evidence-based parenting interventions appropriate for ADHD/neurodivergence.
4. School interventions must be expanded to include ADHD/neurodivergence to improve ADHD outcomes delivered via mental health support teams (MHSTs) and Partnerships for Inclusion of Neurodiversity in Schools (PINS) programmes. School and education policies and practice need to enable children with ADHD to thrive. Schools require direct links with ADHD health service providers.
5. Adolescents and young adults (ages 11–24 years) have been shown to be an especially high-risk group. Needs-led, cross-sector integrated youth services for this age group have been effective in other countries.
6. Expand existing workforce skills in health, education, relevant sectors of employment and the criminal justice system to better recognise and support people with ADHD based on their needs without waiting for a diagnosis.
7. Introduce more transparent and clear regulation of ADHD service providers as well as auditable quality control for commissioners. There is an urgent need for NHS England/DHSC to collaborate with NICE to explicitly define what is meant by an appropriately ADHD qualified healthcare professional. Ensure access to clinical services is equitable, including for marginalised sectors of the population and those in the criminal justice system. ADHD care should be seamless.
8. Urgently reduce ADHD wait times and require the same standards for these wait times as those for physical health given the costs and risks of ADHD as well as for reasons of equity. Different models of care need to be introduced urgently. The implementation of the 10 Year Health Plan for England needs to ensure ADHD is a priority given its costs, impacts and historical neglect despite the availability of effective treatments. This includes digitisation and embedding ADHD assessment and care within neighbourhood health centres with expanded roles for practitioners within primary care. 

What is NPH? 

NPH is a progressive neurological condition that comes under the dementia umbrella. In NPH, the cerebrospinal fluid-filled ventricles within the brain expand and distort the surrounding tissues. This process causes the neurological symptoms of NPH. Unlike other forms of hydrocephalus, NPH does not result in significantly raised intracranial pressure. NPH is often misdiagnosed as it is similar to neurodegenerative conditions such as Parkinson’s disease and other causes of dementia, such as Alzheimer's disease. However, unlike these other conditions, if diagnosed early there is an effective treatment that can significantly slow disease progression and potentially improve, or even reverse, symptoms in some people. 

Who is affected by NPH? 

NPH mainly affects older adults. Prevalence is difficult to estimate but 0.8% of people over 65 has been calculated in multiple studies.[1][2] In the UK that would be approximately 100,000 people. 

What are the signs of NPH? 

NPH is characterised by: 

• Gait disturbances: difficulty walking, shuffling steps or feeling as if the feet are stuck to the floor. Difficulty balancing and falls, particularly backwards are common. 
• Cognitive impairment/mild dementia: memory loss, confusion and difficulty concentrating. 
• Urinary incontinence: loss of bladder control, which may worsen over time. 

Because NPH symptoms can resemble those of Alzheimer’s or Parkinson’s disease, and comorbidity is possible, NPH diagnosis is often missed, delayed or mistaken. Additionally, not everyone will experience all three symptoms. NPH is usually diagnosed through a combination of clinical presentation and imaging and diagnostic tests.

How is NPH treated? 

The treatment of choice for NPH is shunt surgery, where a small tube (shunt) is implanted to drain excess cerebrospinal fluid (CSF) from the brain to the abdomen. This procedure can significantly improve symptoms, especially if performed early.  Evidence suggests that 76% of people experience some improvement after shunt surgery. Gait (walking) improves in 75% of patients, cognitive function improves in 61%, and improvement of incontinence can be seen in 55%.[3] 

Patients with treated and untreated NPH can benefit from ongoing multidisciplinary support from neurology and other services, including physiotherapy, medication, occupational therapy and neuropsychology. 

Since treatment response is generally better with earlier treatment, early and accurate diagnosis and treatment can greatly enhance quality of life for individuals with NPH.  

*Jackie’s story

I'm currently aged 77. I was, until around six years ago, very lucky. I had had very good health. I was happily married with three wonderful children and six lovely grandchildren. I was enjoying life. Then in 2019 I started developing distortion in my gait. Friends suggested I might be developing Parkinson's disease, but my difficulties were relatively mild so I didn't seek any medical advice at the time.  

By March 2020 my symptoms had slightly worsened. I first went to my GP, then a neurologist in the local hospital. The neurologist arranged a brain scan and afterwards reported that my ventricles were consistent with atrophy allowing for age. He diagnosed Parkinson's disease, though he said at the time he couldn’t be certain. My condition was still quite mild then and I didn't need any treatment.  

The following year, I found my condition had deteriorated. I had been a keen cyclist but found I couldn't ride a bicycle. I was frequently losing my balance and my gait was getting much worse. I was having sleeping problems and so needed to take sleeping aids, but was experiencing daytime drowsiness. My handwriting deteriorated and I couldn't write letters anymore. I was also experiencing incontinence. 

I visited a different neurologist, who, after eventually getting hold of my original scans, diagnosed me with NPH. I had never heard of NPH but he showed me the scan with two large white blobs that were the enlarged, CSF-filled ventricles. To my amateur eye, these looked very obvious. I expressed surprise that the original radiologist and neurologist didn’t detect or pick up on the significance of the changes. My second neurologist explained that untreated NPH is progressive but unlike Parkinson's disease, there is a potentially very effective treatment. Neurosurgery to drain the excess CSF was urgently recommended.  

It was in August 2022, and I initially struggled to find a surgeon that could take me in quickly. I eventually found a clinic in London who could admit me the following day. My first procedure fitted a temporary drain to remove CSF and see if I would be a good candidate for shunt surgery. I was amazed at the effectiveness. I could walk almost normally without a stick for the first time in two years. I could rise from a chair and generally felt much younger and more mobile. I was also able to sleep properly.

My neurosurgeon was impressed by my rapid recovery and so a more permanent treatment was arranged. Five weeks later I had a ventricular shunt fitted to help drain the CSF long-term. Again, the effect was dramatic: I could walk, my brain fog had lifted, I felt much better and my incontinence vastly improved. The relief was incredible, and I've continued to prosper.

My take-home message is please consider the possibility of NPH as a diagnosis where there are clinical signs. If a patient has symptoms that overlap with NPH, such as Parkinson's disease or Alzheimer's disease, even if they’re already diagnosed, please check they’ve had a brain scan and make sure it’s reviewed by someone with the expertise to diagnose or rule out NPH.

Just think “could it be NPH?” if it is, it could be treatable, and a patient’s life could be transformed as mine has been.   

Where can I learn more about NPH? 

• BMJ best practice guidelines for NPH. 
• Shine NPH support services across England, Wales and Northern Ireland. Support and information can be requested by patients and carers by phone (01733 555988) or email: firstcontact@shinecharity.org.uk
• Healthcare professionals wanting to know more about NPH can join Shine Professionals and completing our free CPD accredited e-learning module on the condition.

References 

1. O Conn H. (Normal pressure hydrocephalus (NPH): more about NPH by a physician who is the patient. Clinical Medicine 2011; 11(2): 162–5. 
2. Kiefer M, Unterberg A. The differential diagnosis and treatment of normal-pressure hydrocephalus. Dtsch Arztebl Int. 2012; 109(1-2): 15-25.
3. Giordan E, Palandri G, Lanzino G, et al. Outcomes and complications of different surgical treatments for idiopathic normal pressure hydrocephalus: a systematic review and meta-analysis. Journal of Neurosurgery 2019; 131(4), 1024-36. 

*The names in this blog have been changed to ensure anonymity. 

Cross-agency and government department working

1. Data capture: government and its relevant departments (specifically DHSC, MoJ, DfE and DWP) need to work together to improve data capture digitally and join up of datasets. This is to understand where people with ADHD or neurodivergence are in public services, the disproportionalities that exist, and to capture impacts and outcomes.
2. The Office for National Statistics should routinely collect and analyse data relating to ADHD in health, education, the workforce and the justice system.
3. Spending review plans: government and its relevant departments (specifically DHSC, DfE, DWP and MoJ) need to work together on radical and holistic spending review plans. These plans should consider the work of the Taskforce, the DWP academic panel on neurodivergence and the DfE Task and Finish group on neurodivergence. We recommend an invest to save model that includes ADHD and neurodivergence training and awareness building across all different sectors as well as evidence-based, holistic models of care (that will be described in the final report).

Prevention

1. Needs-led support that is uncoupled from diagnosis: DHSC/NHS England, DfE and MoJ must work together to prioritise early years support that is based on needs not diagnosis to break the school to prison, school to adult unemployment and school to ill-health pipelines. Examples of very early, structured support that have worked include evidence-based parenting interventions and early years support, embedded in Sure Start areas. For school age children, another step is to ensure that rollout of outreach mental health support teams in schools (MHSTs; Mental Health Support Teams) is completed and enhanced by the inclusion of staff with neurodivergence expertise in every school. These teams need to be linked up with integrated neurodevelopmental and Children and Adolescent Mental Health Services (CAMHS) teams.
2. Urgently address escalating NHS ADHD waiting times: DHSC and HMT must act quickly to address the growing backlogs across both children’s and adult services to avoid wasted expenditure on the adverse outcomes of untreated ADHD (e.g. repeated A&E use, chronic mental and physical health problems, prison, unemployment) and identify those at highest risk. The government should ensure that local systems bring down ADHD waiting times for children’s and adult services in line with its commitments on reducing waiting for diagnosis and treatment for physical health conditions. This can be achieved in cost-effective ways that meet quality standards, are accessible and build for the future (e.g. by nurse-led triage, by task-shifting so that senior medical time is primarily utilised for consultation, supervision and the most complex cases).
3. Improve support to those on waiting lists: health care providers/integrated care boards (ICBs) must ensure support for those waiting and provide clear signposting to local organisations that can provide information and support. Health care providers/ICBs to consider screening of wait lists to identify the most severe ADHD, co-morbidities and risks (e.g. suicidal) for prioritisation using evidence-based clinical screening tools (different to profiling tools) but not on their own, as such tools can over and under-identify ADHD.

From hospital to community

1. A generalist model: NICE should reconsider its stance and interpretation that ADHD always requires a highly specialised, secondary care workforce (ADHD super-specialists) for diagnosis, treatment initiation, follow-up and other types of support. It should clearly define the meaning of specialist to enable greater involvement of primary care (with training and remuneration), with secondary care support as well as generalist secondary care. This approach would align ADHD management with the way other common conditions, such as diabetes, are managed. A clear definition of ADHD specialist and monitoring of NICE adherence is also important to regulate non-NHS providers and allay concerns raised by some about the quality of diagnosis or over-diagnosis by some providers.
2. A single, accessible front door: Integrated care systems (ICSs)/Neighbourhood Health Services need to work with other local services to modernise ADHD pathways to join up professional expertise across different types of neurodivergence/neurodevelopmental disorders. Furthermore, there needs to be an explicit link up with mental health services. Such pathways need to operate across all age groups and involve different settings of care and intensity of support (inclusive of primary and secondary care, local authority, VCSE (voluntary, community and social enterprise) and, where needed, private providers). One potential model that has been adopted in Canada and some other countries is the community-based Integrated Youth Service (IYS) for youth aged 12 to 25 years. These provide an evidence-based ‘one-stop shop’ that include support for neurodivergence, mental health and substance use, physical health, peer support, education, employment and social services. The emphasis is on needs, goals and strengths rather than diagnostic siloes and, in Canada, these have led to more rapid access to support and cost savings (to be described in Part 2 of our report).
3. Stepped care: Integrated care systems (ICSs)/Neighbourhood Health Services should adopt ‘test and learn approaches’ to a stepped care model that involves providing support of different intensities for ‘possible ADHD’ and high-quality ‘clinical diagnosis of ADHD’. This should involve primary and secondary care, local authority, VCSE and private providers. The NIHR should fund formal evaluation of these models.

Digitalisation

1. Introduce NHS digitalisation into ADHD services now: the DHSC through its 10-year plan should prioritise the digitalisation of ADHD services. Digitalisation can speed up routine administrative tasks (e.g. questionnaire measures, height, weight, blood pressure centiles, generating reports), help screen waiting lists and, where evidence based, improve efficiencies (e.g. Quantitative Behaviour test (26). These do not substitute for clinical care and clinical measures should be evidence based.
2. Improve evidence base: NICE should scope an early value assessment (EVA) of digital products delivering improved outcomes and efficiencies for ADHD management and treatment across the pathway and settings of care.
3. Improve data quality: NHS England/DHSC must prioritise its data improvement work. Currently, data on ADHD waiting lists, referrals, outcomes, local and regional ADHD diagnosis and treatment rates and on clinical standards of all providers are of poor quality.

• Parkinson's UK time critical medication dashboard. The new dashboard estimates the benefits of improving time critical medication management for people with Parkinson's in hospitals in England, Scotland and Wales. The dashboard estimates the direct cost for hospitals and impact on patient outcomes of delayed or missed medication doses. 
• Audit and awareness: how staff at Hexham General Hospital improved the delivery of time critical medication. This case study details how a staff nurse's dissertation led to an increase in Parkinson's medication delivered on time on a ward at Hexham General Hospital.
• Webinar: Driving improvement on time critical Parkinson's medication. In February our fully subscribed webinar included a session on practical benchmarking against the 10 recommendations. Watch the webinar recording and read the Q&A document now. 
• Time critical medication patients' stories: in their own words. In these new short films, people with Parkinson’s share their experiences of receiving their Parkinson's medication in hospital and how this impacted on their health and well being. These films have been developed to raise awareness and support education and training of health professionals. 

Read more in the latest time critical medication blog by former nurse Patsy Cotton.

Access all of the time critical medication resources.

Self administration of Parkinson’s medication: a guide for hospital staff
This guide supports senior pharmacists and nurses who are working to develop a self administration policy or better utilise an existing policy to support the delivery of time critical medication. 

Time critical medication patients' stories: in their own words
In these short films, people with Parkinson’s share their experiences of receiving their Parkinson's medication in hospital and how this impacted on their health and well being. These films have been developed to raise awareness and support education and training of health professionals. 

Time critical medication: hospital awareness kit
This new collection of interactive posters, vibrant screensavers and social media graphics will help you to raise awareness of time critical Parkinson’s medication in your hospital. 

Electronic prescribing: how it can improve the delivery of time critical medications
This resource describes how NHS Ayrshire & Arran hospitals improved their rates for administering patients' Parkinson's medications on time, sharing case studies and tips on how other hospitals might be able to replicate their successful e-prescribing system.

Improving the delivery of time critical medications at Bradford Teaching Hospitals NHS Foundation Trust
A best practice case study showcasing a quality improvement project at Bradford Teaching Hospitals NHS Foundation Trust.

Further information, resources and training to support your work on time critical medications resources are available at www.parkinsons.org.uk/time-critical-medication-resources.

The results show that, although young people may be discharged from regular monitoring by health professionals at age 18, their health often deteriorates, mobility declines, pain increases, and emergency admissions for pressure ulcers, sepsis or UTI increase. Although spina bifida is a non-progressive condition, the impact of tethered cord, Chiari II, use of mobility aids, and the sequelae of insensate skin and immobility mount up.

Numerous adults reported that many aspects of their health, ability, and quality of life declined from around the age of 35. Many stopped driving, others stopped working, anxiety and depression worsened, at an age many non-disabled adults regard as their prime.

We can and must improve care for adults with spina bifida by planning proactive, integrated services from transition throughout adulthood. Shine asks you to consider how you can improve your services to do this. 

The new guides have been produced by health professionals as part of work by Parkinson’s UK to ensure that everyone with Parkinson's in hospital gets their medication on time, every time.

Read about the latest developments in time critical medication, including the guides and the Royal College of Emergency Quality Improvement Project on the Parkinson’s UK website.

Download the report

Parkinson's UK have also issued a joint statement with other charities whose patients are impacted by needing time-critical medication with the support from professional bodies.

Further reading on the hub:

• Medication delays: A huge risk for inpatients with Parkinson’s
• Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff

When people with Parkinson’s don’t get their medication on time, it can seriously impact their health. They may not be able to move, get out of bed, swallow, walk or talk. 

“While in the hospital, I missed repeated doses of my medication due to a lack of knowledge and understanding of my condition-specific needs. This threw me out of sync completely – it brought on more severe depression, unsteadiness on my feet, and more severe tremors. 

“As  well as affecting my health, the experience has affected my confidence and makes me terrified of going back into hospital.” Carole, a person with Parkinson’s. 

Even a delay in taking medication of 30 minutes can lead to serious health implications for someone living with Parkinson’s. The timing of these medications varies from person to person and often doesn’t correspond with typical medication rounds on hospital wards. 

The latest data from the 2022 UK Parkinson’s Audit found only 42% of people with Parkinson’s admitted to hospital always received their medication on time. 

Campaign led by health professionals takes off

On World Parkinson’s Day last year, a group of healthcare professionals who live with Parkinson’s themselves decided to take action.

Led by emergency care doctor Jonny Acheson and nurse Clare Addison; the campaign started as a simple idea: doctors, nurses and other healthcare professionals who have Parkinson’s are patients too! And they can work together with their colleagues to improve healthcare services for people with Parkinson’s. 

The campaign spanned across social media and emails, where campaigners would share a video with a hospital trust or their CEO. The video talked about how critical it was that people with Parkinson’s get their medication on time, and asked for a pledge of support for the campaign to make sure no one misses another dose. 

Each campaigner would follow up on any public pledges or contact with a phone call and an email, reaching out and offering resources, introducing the trusts to Parkinson’s UK and offering a meeting. This work was painstaking and took a long time to find contacts and collect local data. But it paid off! Over 100 chief executives of acute healthcare trusts, regional ambulance services, chief nursing officers and other NHS executives across all four nations have pledged their support.

The campaign has also made strides nationally with an NHS England webinar for nurses on time critical medication planned for 19 April 2023, and a communication raising awareness of the issue from the Chief Nursing Officer for England, Dame Ruth May DBE, to all the Chief Nursing Officers in England. 

What next?

This year on World Parkinson's Day, Jonny Acheson and Clare Addison will launch the second phase of this campaign with the release of a 10 recommended actions for hospital trusts to take to ensure that people with Parkinson’s get their medication on time. 

Watch the 10 recommended actions video here

What can I do?

Discover the information and resources for professionals, to support your work and ensure everyone with Parkinson's in hospitals or care homes gets their medication on time, every time.

The Parkinson's Excellence Network (@ParkinsonsEN) will tweet the video on World Parkinson's Day please to retweet it and share it with colleagues.

The report calls on the UK Government, Scottish Government, Welsh Government and Northern Ireland Executive to prioritise services for people with neurological conditions and establish a Neuro Taskforce. The Taskforce would bring together relevant departments, health and social care bodies, professional bodies, people affected by neurological conditions and the voluntary sector to:

• Assess the current neuroscience workforce and set out plans to ensure it is fit for the future.
• Share approaches to common problems, such as addressing longstanding barriers to accessing mental, emotional and cognitive support, driving down waiting lists for elective care, improving the quality and analysis of health and care data and supporting transition between paediatric and adult neuroscience services.
• Assess the level of investment in research into the causes, impacts and possible cures of neurological conditions and set out plans to level up investment in areas that do not receive a fair share currently.

Not enough people understand what it’s like to live with Parkinson’s. They don’t know it’s a serious condition. They don’t realise that treatments are limited and that there is no cure.

That’s why on World Parkinson's Day (Monday 11 April 2022) we want to get the world talking about Parkinson’s. 

Key facts about Parkinson’s you might not know

• Parkinson's is the fastest growing neurological condition in the world.
• There are over 40 symptoms. From pain and stiffness, to problems with sleep and mental health. Everyone’s experience is different.
• Around 145,000 people in the UK are currently diagnosed with Parkinson's.
• 1 in 37 people today in the UK will be diagnosed with Parkinson's in their lifetime.
• Every hour, 2 more people are diagnosed. That's around 18,000 people every year. 
• Up to 40% of people with Parkinson’s experience depression and up to 31% experience anxiety at any one time. 
• At any time, around 3 in 10 people with Parkinson's experience dementia. 

This year, Parkinson’s UK is supporting two activities – Poems for Parkinson’s and Light Up Blue for Parkinson’s – chosen and led by a group of our dedicated and passionate volunteers: 

Poems for Parkinson’s

Everyone with Parkinson’s, their carers and family has a story to tell about the condition. We are encouraging our community to write a limerick or five-line poem to share what it’s like to live with Parkinson’s. We want to tap into the creativity of the Parkinson’s community and share how the condition affects them, to improve awareness. Here are some examples from our Cherry Hill Parkinson's cafe on Teesside.

Parkinson's nights have hours to kill
Did I forget to take a pill?
Stand sit, Stand and sit,
Twirl around a little bit 
FOR GOODNESS SAKE, KEEP STILL! JUST CHILL!

Saturday night and Strictly’s on telly
If I could dance I’d give it some welly
But my Parkinson’s shuffle
Has got me in a kerfuffle
And I’d end up like wobbly jelly

Light Up Blue for Parkinson’s

Iconic landmarks across the country have been lighting up blue to mark World Parkinson’s Day for several years. 

Our volunteers are asking more iconic public buildings to light up, but also some of our community are also lighting up their own homes blue to mark the day. They’ll then share this on social media and tell their local press, to spread awareness of Parkinson’s.

How you can show your support for World Parkinson’s Day

• Light up blue at home or at work. Use this guide to find out more.
• Follow @ParkinsonsUK on Twitter and retweet any content we share on World Parkinson’s Day.
• Sign up to the Excellence Network newsletter for health and care professionals who want to work together to improve care for people living with Parkinson’s

Further blogs in the Parkinson's series

• Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff 
• Preparing to go into hospital – tips for people with Parkinson's and their carers 
• Medication delays: A huge risk for inpatients with Parkinson’s