Coronavirus - how we’ve been fighting for people with Parkinson’s

We’re sticking up for people with Parkinson’s. Here are some of the things we’re fighting for during the coronavirus crisis.

This page was originally published on 28 April 2020. It was updated on 18 September with recent activity, including asking volunteers to share their experience of virtual healthcare appointments.

We will regularly update the page when we have new information to share on our campaigning activity.

If you are looking for information and support, see more about Parkinson’s and coronavirus on our dedicated page.

If you have had an virtual healthcare appointment in the last 6 months and would like to share your experience of how it went, please email [email protected] or call 020 7963 9349 and a member of the team will be in contact with you.

The coronavirus (COVID-19) outbreak has meant that UK governments have introduced new laws, policies and procedures to guide how we live during the pandemic. This includes how NHS services, social care and benefits will be delivered. 

Health, social care and benefits must meet your needs. Right now, it’s clear that not everyone’s needs are being met. So, we're listening to your concerns and experiences. And we're talking to the relevant governments and organisations. We demand they take action, to make sure you’re treated fairly.

Here are some of the issues we're fighting for.

Medication

Access to medication

  • Finding out about Parkinson’s medication supply issues.

We’ve heard concerns about access to medication. There are currently no national supply issues for Parkinson’s medication, but there may be local supply problems.

We follow up reports of medication supply issues with the relevant pharmaceutical companies. We make sure major supply issues are raised with government departments in each UK country. We also talk to pharmaceutical organisations to understand issues pharmacists are facing, so we can give you the most relevant and current information.

We had a question asked in parliament about what safeguards the government is putting in place to ensure Parkinson's medications are in stock during the pandemic and beyond.

To report any problems accessing your medication, call our helpline on 0808 800 0303. We’ll need the medication name, manufacturer, strength, and the name and location of your pharmacy.

Prescription charges in England

  • Demand to suspend prescription charges for people with long-term health conditions during the pandemic.

Parkinson’s UK is the Chair of the Prescription Charges Coalition – a group of nearly 50 charities. We wrote to the health minister for England on 19 March to urge the government to suspend the charges for people with long-term conditions. It’s important that people can afford their medication so they can stay well, and out of hospital. 

In September the Department of Health and Social Care responded to our letter saying they would not be suspending the charge. We are reviewing their response and deciding on our future activities with the Coalition.

Vulnerability

Parkinson’s and the extremely vulnerable list

  • Parkinson’s is not on the clinically extremely vulnerable list. We’ve been talking to Public Health England and decision-makers in the other 3 UK countries. 

The majority of people with Parkinson’s do not currently fall into the UK government’s clinically extremely vulnerable category. Most people with Parkinson’s are in the moderately vulnerable group.

The conditions defined in the extremely vulnerable category include a weakened immune system, severe respiratory issues, or people who’ve had an organ transplant. If you meet these criteria and have Parkinson’s, and you haven’t had a letter, contact your GP or specialist and ask them to consider adding you to the list.

Many people are anxious about Parkinson’s not being on the list. We’ve raised questions with Public Health England, and the other UK country counterparts, about this. 

As GPs and Parkinson’s professionals can add people who are extremely clinically vulnerable to the list, we’ll define risk factors for people with Parkinson’s and share with these professionals.

We have also shared these factors and our views with the team developing the risk stratification tool, which will be launched later this year. The tool will help professionals have conversations with their patients about how to reduce their risk of contracting the virus. 

Impact of the Coronavirus Act

  • Voiced concerns and suggested improvements to meet the needs of people with Parkinson’s, their families and carers.

When the Coronavirus Bill was introduced to the UK Parliament on 19 March, we analysed the relevant sections for people with Parkinson’s. We briefed MPs and peers about our concerns and recommended improvements to meet the needs of people with Parkinson’s, their families and carers.

Several MPs raised our concerns during the debates. However, this is now law, with a 6-month review period. We will track the impact of changes announced in the review.

Please share your experiences – by emailing [email protected] – so we can lobby MPs and members of the House of Lords. They can argue for changes when the law is reviewed. We will share your experiences with elected members and officials throughout the UK. This will help decision-makers to understand the impact of the Act on people with Parkinson's, and their families, friends, and carers.

Download our policy position

Our policy position on Parkinson’s and government definitions of vulnerability.

Access to support

Supermarket deliveries 

  • Talking to supermarkets and UK governments to improve shopping and deliveries for people with Parkinson’s.

Many of you have told us that you’re struggling to get online shopping deliveries from supermarkets.

We emailed all supermarket chief executives on 31 March. They all said that they were overwhelmed with demand, and prioritising the 1.8 million people in the extremely vulnerable group.

Along with 24 other charities, we’re trying to influence supermarkets and the UK government. We asked them to look at how they can meet the needs of people with long-term conditions who don’t fall into this extremely vulnerable group.

We’re discussing improvements in access to delivery slots with the UK Department for Environment, Food, and Rural Affairs and people with Parkinson's can now use the NHS volunteer responder scheme to get help with food and medication deliveries.

In Northern Ireland, priority delivery slots have been opened up for those who have been advised to shield by their GPs. Complete the form on NI Direct and retailers will get in touch directly to book a delivery.

We’ve also provided evidence on coronavirus and food supply to a parliamentary committee.

For help with local contacts and resources right now, call our helpline – 0808 800 0303.

Benefits

  • Backing the campaign to increase disability benefits by £20 a week.

Since the outbreak there have been changes and delays to benefit services. We’ve raised the issues faced by people with Parkinson’s and families, friends, and carers with the government, and assessment providers. We’ve also responded to the work and pensions committee inquiry into the impact of coronavirus on people claiming benefits.

We share developments with our helpline (0808 800 0303) and local advisers so that they have the best advice and support for you. 

We’re members of the Disability Benefits Consortium. We back their demand to extend the £20 per week Universal Credit emergency increase to other disability benefits, like Employment and Support Allowance. Please support the call to #IncreaseDisabilityBenefits

Parkinson’s services and our helpline

  • Parkinson's specialist nurses are not able to offer face-to-face appointments right now. Many Parkinson's specialist nurses are having to reduce their service. We’re listening and responding to make sure services continue.

Specialist Parkinson’s services have changed the way they’re working. Many professionals, including consultants, are also being redeployed to help the NHS respond to coronavirus. 

On 16 April, we attended the National Neurology Advisory Group and NHS England Neurosciences Clinical Reference Group. We shared your concerns about changes and reduction in services, especially physiotherapy and speech and language therapy. We will continue to share feedback with these groups in England, and the equivalent bodies in Scotland, Northern Ireland and Wales, to make your voice heard.  

We’ve worked with the Parkinson’s Disease Nurse Association and the Alliance of Scottish Parkinson's Nurse Disease Specialists, to develop a statement of support. This will help nurses to encourage their managers and commissioners to retain a Parkinson’s nurse service. We also have a weekly virtual call with Parkinson’s nurses to understand the challenges they’re facing. On the call we share the work we’re doing so they can signpost their patients to the support we provide.

Your questions are helpful for this work. We took your most common questions and developed our online guidance. We also ran an online Q&A with Dr Donald Grosset, neurologist and Clinical Director of the UK Parkinson's Excellence Network.

  • Conducted interviews with our community on their experience of virtual appointments

Our coronavirus survey showed that a third of respondents with Parkinson's had their appointments cancelled during the lockdown. Many respondents were not offered a phone or video appointment, however we know some people were.

We believe it is important that every person with Parkinson's has a choice about how their healthcare appointments are conducted.

We want to hear from those who had a virtual appointment to understand what worked and what could be improved in the future. If you'd like to share your experience, please email [email protected] or call 020 7963 9349 and a member of the Campaigns team will contact you.  

  • Improved our guidance on hallucinations and delusions

We heard that Parkinson's nurses and our local advisers were seeing an increase in people with Parkinson's and their carers reporting distressing hallucinations since the lockdown began. 

We spoke with neuropsychiatrists and improved our advice on helping people with Parkinson's and carers to manage distressing hallucinations and delusions.

Download our policy position

Our policy position on Parkinson's and financial health during the coronavirus pandemic.

Social care and healthcare

Access to critical care

  • Contacted health authorities to raise concerns over access to critical care in hospitals.

Some people are worried about whether Parkinson’s would stop them accessing critical care if they were taken to hospital with coronavirus (COVID-19).

We’ve joined forces with other long-term condition charities to raise these concerns with NHS England and NHS Improvement, the Care Quality Commission, and governments in Scotland, Wales and Northern Ireland. We will continue to raise concerns on an ongoing basis.

Critical care and ethical treatment

  • Demand that treatment decisions are based on someone’s likelihood of recovery.

We’ve signed up to the National Voices joint statement on coronavirus. Throughout the UK, we’re calling for treatment decisions to be made based on someone’s likelihood of recovery, and not because of any health condition or disability.

We also supported the joint statement released on 30 March on advance care planning, that covers ethical treatment.

We’re listening to people with Parkinson’s and the people in their lives. We act on the most pressing needs, and these continue to direct and develop our influencing work over the coming months.

Changes to care provision

  • Proposals in the Coronavirus Act mean that there’s a threat to continuing healthcare and social care for people with Parkinson’s in England. We’ve told the government and relevant organisations about our concerns. 

When we read the proposals in the Coronavirus Act, we saw that care for people with Parkinson’s would be threatened. We’ve briefed MPs about our concerns and raised them with government departments throughout the UK.

We’re working to understand the health and social care issues that people with Parkinson’s, and the people in their lives may face. We will use our findings to influence governments across the UK.

We've been reviewing and summarising government and NHS guidance on social care so our helpline and advisers can give accurate advice and guidance about what people with Parkinson's can expect from the social care system. Visit our dedicated page on coronavirus and social care to help understand what you can expect.  

We’ve also written to NHS England and NHS Improvement and met with them to share our concerns about stopping continuing healthcare assessments. We’re worried that people may not receive the care they need if Clinical Commissioning Groups cancel assessments, or reduce care packages. 

We had several questions asked in parliament about what mental health support the government is providing people with Parkinson's and carers and also those living with Parkinson's dementia.

We record the impact of health and social care changes on people with Parkinson’s – so we can share with decision makers across the UK and argue for changes when the laws are reviewed. Share your story with us by emailing [email protected].

Download our guidance

Our guidance for people with Parkinson’s and carers about care packages they can ask local authorities/providers 

Download our policy positions

Our policy position on Parkinson's and health services during the coronavirus pandemic.

Our policy position on Parkinson’s and ethical decisions on access to treatment during the coronavirus pandemic.

Share how coronavirus has affected you

It’s important that we hear how this coronavirus pandemic is affecting you. The more voices we hear from, the more clearly we can make your case to governments and decision-makers across the UK.

We're here for you

We have a range of information and support to help you during this challenging time. Our friendly helpline advisers are also available to take your call if you have any concerns, questions, or need further advice.

Join our Network

Join our movement of over 12,000 people. Every month supporters help by signing a petition, completing a survey or emailing a decision maker.

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