Supporting continued access to Parkinson's nurses through the COVID-19 pandemic

Leaders from the Parkinson’s Disease Nurse Specialist Association, the Alliance of Scottish Parkinson's Nurse Disease Specialists and Parkinson’s UK, share their statements of support for Parkinson’s nurse specialists, and all Parkinson’s services, during the coronavirus pandemic.

The UK’s healthcare system is facing one of the biggest challenges in its history. There’s a need for all staff, from consultants to ancillary staff, to pull together and support each other and patients.

People with Parkinson’s are on the government’s list of those at increased risk of severe illness from coronavirus (COVID-19) and have been asked to be particularly stringent in following social distancing measures. Many people living with the condition will also be over 70 and have multiple comorbidities.

During this period of social distancing and self-isolation, it remains vital that people living with Parkinson’s, their carers and families, have access to, and support from, their specialist services. Particularly from Parkinson’s nurse specialists. 

Parkinson’s nurses play a crucial role in the clinical management of Parkinson’s symptoms. They’re a reliable point of contact for information and support - often having built trusted relationships with patients over a number of years. 

Maintained support from Parkinson’s nurses, via telephone or video consultations, during the pandemic is crucial. This support helps to avoid increased distress for people with Parkinson’s, and the people in their lives. It also helps mitigate increased strain on our health system, in both the short and long-term. 

In the short-term, it is crucial that people with Parkinson’s are supported to self-manage symptoms and to strictly follow social-distancing guidance. This will lower their risk of being exposed to coronavirus in the community and through hospital admissions.

The long-term consequences of many people having their Parkinson’s symptoms deteriorate irreversibly during this period could result in a distressing loss of quality of life for this patient group, and their loved ones. It may also lead to a hugely increased workload for the health and care services working with people affected by the condition, just as they start recovering from the fallout of the coronavirus pandemic. 

For these reasons, the Parkinson’s Disease Nurse Specialist Association (PDNSA) and the Alliance of Scottish Parkinson's Nurse Disease Specialists (ASPNS) believe that when managers and commissioners are making difficult decisions about having to redeploy staff, they should consider retaining their Parkinson’s nurse service. This would be achieved through providing a nurse-led remote clinic for ongoing monitoring and support.

We acknowledge that Parkinson’s nurses will need to offer remote telephone or video consultations, and that Parkinson’s teams may need to operate with reduced capacity during the coronavirus pandemic.  We recommend that where a service needs to be temporarily suspended, urgent messages should still be triaged and call-backs facilitated where appropriate. 

All services should be signposting to other local and national sources of support, including Parkinson’s UK. The PDNSA and ASPNS will work with Parkinson’s UK to help our patients, and their family and friends, reach additional support at this time. But third sector support cannot make up for clinical expertise. 

Now is the time that our patients need their Parkinson’s nurses most.

Our priority remains supporting people living with Parkinson’s

Katherine Crawford, Director of Service at Parkinson’s UK, said: 

“Over the last thirty years, Parkinson’s UK has worked closely with the NHS and commissioners to build our current workforce of highly specialist and trained Parkinson’s nurses. We’ve invested over £7 million to increase the number of nurse posts. And we've co-produced resources for nurse development

“We know that many nurses are now facing an impossible choice. Wanting to contribute to the fight against coronavirus, and to continue supporting people with Parkinson’s, and the people in their lives, through an anxious and uncertain time.

“Our priority remains supporting people living with Parkinson’s. We will work closely with the PDNSA and ASPNS, and all members of the UK Parkinson’s Excellence Network to do this. Together we'll ensure that people with Parkinson's, their family and friends, can reach our support and information during the coronavirus pandemic. To provide additional support, we have increased the number of staff on our helpline. We’re providing frequently updated information about coronavirus and Parkinson’s, and have launched a new community facebook group.

“Even with increased support, we cannot replace the expert clinical support, medication management, and trusted relationships provided by specialist Parkinson’s services. 

“So, as we increase our support now, we ask for the support of managers and commissioners in turn, to ensure continued access to Parkinson’s specialists where possible. And, we ask that Parkinson’s nurses are able to return safely and swiftly to their posts across the UK once we’ve overcome the immediate threat of coronavirus.”

How Parkinson's nurses are supporting people during the pandemic

Keeping people with Parkinson's safely at home is the priority for Parkinson's nurses at this time. This can be achieved through continued:

  • clinical management and support via remote consultation, especially where other specialist colleagues have been re-deployed
  • medication management
  • referral to other medical, care and social services when needed, and helping people navigate changing referral pathways 
  • support for other healthcare professionals with expert advice e.g. GPs and non-specialist secondary care teams
  • clear advice on who to contact and what to do in case of medical emergencies
  • signposting to Parkinson's UK and other support organisations

Support for Parkinson's nurses

Relevant guidance and support for professionals, including nurses, is available in the Excellence Network resource centre. Resources include a weekly webinar being provided for Parkinson's nurses by the National Parkinson Foundation Centre of Excellence at King's College Hospital.

The Parkinson’s Disease Nurse Specialist Association (PDNSA) leadership encourage nurses to get in contact for advice and peer support via the PDNSA website.

A forum for PDNSA members to share advice and support is also available on the website. 


Professional coronavirus resources

Find guidance and support for nurses and other professionals to support you through the coronavirus pandemic.

To ensure Parkinson's nurse posts are protected after the current crisis we need a robust evidence-based case for roles. 

You can add to this evidence by taking part in the the Understanding The Scope study, led by Professor Annette Hand and colleagues at Northumbria University, Newcastle, with Parkinson's UK funding. The study will evaluate the role and provide an evidence base for commissioning.

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

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Together, we can give critical support to people with Parkinson’s, their families, friends and carers during the coronavirus crisis. 

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