Coronavirus: how we’ve been fighting 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 27 July 2021.

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.

The coronavirus (COVID-19) outbreak 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.

Legal restrictions lifting

Some restrictions and social distancing guidelines are beginning to lift in all 4 UK nations. This has caused concern for many people in our community. They feel measures such as social distancing and face masks have helped them to feel more confident while going about their daily lives.
 
We have worked with health and care charities to raise these concerns with the Prime Minister. We have also sought advice from clinical experts to provide reassurance to people with Parkinson's, their friends and carers.
 
If you do have any questions or concerns get in touch with us via email [email protected] or call 0800 138 6593.

Vaccine concerns   

Once coronavirus vaccines were approved, we used concerns from the Parkinson’s community to engage with the Department of Health and Social Care.

We have been able to reassure you about the safety of the vaccine, when you’ll be able to get it and also what to do if you experience any side effects. We also worked with other charities to make the case that unpaid carers need to be prioritised for the vaccine.

Read more about the coronavirus vaccine and Parkinson’s.

We escalated and resolved concerns from the Parkinson’s community where you faced issues getting the vaccine. In Scotland our work has helped to clarify guidance for vaccinators who had, in a small number of cases, turned away people with Parkinson’s.

We shared this information via a Q&A on Parkinson’s and the COVID-19 vaccine with Parkinson’s professionals.

Access to health and care services

Specialist Parkinson’s services changed the way they worked during the pandemic as many professionals, including consultants, were redeployed to help the NHS respond to coronavirus. 

We continue to monitor health and care services as we know that people with Parkinson’s may face delays to access their appointments.

We are working with other charities and professional bodies to urge the NHS to ensure that neurological services are given the resources they need to provide the care and support that people with Parkinson’s need. This is especially important as many people have told us their symptoms have deteriorated.

Access to medication

We’re keeping an eye on medication supplies as there have been some reports of people having issues getting some of their medication. There are currently no national supply issues for Parkinson’s medication, but there may be local supply problems.

What we’re doing:

  • 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 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 on 0808 800 0303. Please tell us the medication name, manufacturer, strength, and the name and location of your pharmacy.

Access to food 

Throughout the pandemic many of you have told us that you’re struggling to get online shopping deliveries from supermarkets.

Along with 24 other charities, we continue to try and 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 the clinically extremely vulnerable group.

We’ve also worked with the UK Department for Environment, Food and Rural Affairs. 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 people 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.

Benefits

Since the pandemic there have been changes and delays to benefit services. We’ve raised the issues faced by people with Parkinson’s, and your families, friends, and carers, with the government and assessment providers. 

As members of the Disability Benefits Consortium, we’ve backed their demand to extend the £20 per week Universal Credit emergency increase to other disability benefits, like Employment and Support Allowance. The Chancellor confirmed in the recent Budget that the Universal Credit uplift will be extended until the end of September, but it will not be extended to other benefits.  

However, we are delighted that the High Court has granted permission for a Judicial Review to challenge this decision, which we will be watching carefully.  

Access to care homes

We've heard concerns from family, friends and carers of people with Parkinson's who have not been able to visit, or had difficulty visiting, their loved one in a care home.

Throughout the pandemic we've ensured that our helpline and Parkinson's local advisers have the information on the latest government guidance, as well as advice from other organisations, on how different ways of visiting can be facilitated within the rules.

We've also provided advice from a former carer on how to make the most out of your visit, when it's able to go ahead. And following the recent introduction of testing care home visitors for coronavirus, we've updated our guidance for carers and families of people with Parkinson's about visiting them. You can download it below.

We updated this guidance on care home visiting following the most recent changes in England.

Improved 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.

Other issues we’ve taken action on during the pandemic

From the outset of the pandemic we listened to our community and raised your concerns and possible solutions with the relevant governments and their departments. 

Here are some of the issues we’ve raised concerns about: 

  • The Coronavirus Act

We analysed the Bill and 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. We are tracking the impact of changes on the Parkinson’s community so we can raise this when the Act is reviewed.

  • Parkinson’s and the clinically vulnerable list

Parkinson’s is not on the clinically extremely vulnerable list as most people on this list have a weakened immune system, severe respiratory issues, or had an organ transplant. A risk stratification tool has been developed, which we fed into. However, people with more advanced Parkinson’s or other health conditions may feel they are clinically extremely vulnerable and so they can contact their GP or their consultant to be added to the list. We also developed a policy statement about this using the views of our community. 

  • Safeguarding research funding 

We have supported a joint charity campaign that calls on the government to support medical research charities following the reduction of income. This includes encouraging supportive MPs and peers to back the campaign in parliament, showing our support on social media and also encouraging our supporters to email the Prime Minister.  

  • 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.

  • Reductions in care provision

We raised concerns about proposals in the Coronavirus Act to reduce access to continuing healthcare in England and also social care. We met with NHS England and NHS Improvement to raise issues about continuing healthcare. We have also raised concerns and successfully influenced governments not to reduce their social care provision. 

We also reviewed and summarised government and NHS guidance on social care so our helpline and advisers could 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 also produced guidance for people with Parkinson’s and carers they can use to ask local authorities and providers about care visits 

We had several questions asked in parliament about what mental health support the government is providing for people with Parkinson's and carers, and also for people living with Parkinson's dementia. We also produced a policy statement on Parkinson’s and health services during the pandemic in consultation with our community.

  • Concerns over access to critical care

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 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.

  • Ethical treatment in hospital

We signed up to the National Voices joint statement on coronavirus. Throughout the UK, we’ve been calling for treatment decisions to be made based on someone’s likelihood of recovery, and not because of any health condition or disability. We supported the joint statement on advance care planning, that covers ethical treatment. We also developed our own policy statement on ethical treatment in consultation with our community. 

  • Prescription charges suspension

As the Chair of the Prescription Charges Coalition, we wrote to the health minister for England in March urging the government to suspend the charges for people with long-term conditions. It’s vital that people can afford their medication so they can stay well and out of hospital. Sadly the Department of Health and Social Care responded to our letter in September saying they would not be suspending the charge. Even so, we won’t stop calling on the government to make prescriptions free for people with long-term conditions.

  • Ensuring there is employment support for those at higher risk 

We worked with other charities to lobby the government to safeguard employees in the clinically vulnerable group who might be at higher risk of being seriously unwell if they caught coronavirus. Our efforts helped to persuade the government to extend the furlough scheme and ensure ongoing support is provided by local authorities. We also produced our policy statement on financial health during the coronavirus crisis in consultation with our community. 

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.

Email your story to [email protected]

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.

With a few clicks you can help make a real difference for people living with Parkinson's.