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 and was updated on 6 May with developments around access to supermarkets in England and Northern Ireland.

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.

Because of the coronavirus (COVID-19) outbreak, 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 listen to your concerns and experiences. And we talk 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.

To report any problems accessing your medication, call our helpline 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 this pandemic. We’re awaiting a response.

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. 

Sadly, we’ve not had a response. Shadow health secretary for England, Jon Ashworth MP, reiterated our call in parliament on 24 March. And we’ll carry on chasing a response, demanding the government addresses our concerns, and raise this issue in parliament over the coming weeks.

Vulnerability

Parkinson’s and the extremely vulnerable list

  • Parkinson’s is not on the clinically extremely vulnerable list. We’re talking to Public Health England and decision makers in the other 3 UK countries. We will develop clear information for people with Parkinson’s, including what to do about being included on the list.

The majority of people with Parkinson’s do not currently fall into the UK government’s clinically extremely vulnerable category. Most people with the 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. We hope to work with the Association of British Neurologists and British Geriatric Society to submit a joint statement to the Royal College of General Practitioners. This will help them to understand the risk factors and apply them to patients with Parkinson’s.

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 ([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.

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 also written to NHS England and NHS Improvement 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 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].

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 with these people 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 support we provide.

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

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.

Emergency Appeal: help deliver what people need, when they need it most

Because of the coronavirus crisis, over a million people with Parkinson’s, their families, friends, and carers in the UK need us more than ever. Help us be here when people need us most.