Supporting continued access to Parkinson's nurses and all specialist services 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 continued need for all staff, from consultants to ancillary staff, to pull together and support each other and patients.

We now know that during this period of social distancing and self-isolation, people with Parkinson’s have seen their health deteriorate and have experienced increased symptoms. Increased symptoms of tremor, stiffness, anxiety, hallucinations and more, have all been reported. Family members and friends of people with Parkinson’s have also taken on more caring responsibilities, with reported impacts on their physical and mental health. 

Additionally, many people living with the condition will be over 70 and have multiple comorbidities, putting them at increased risk of severe illness, and of dying from coronavirus (COVID-19).

NHS Rightcare recommend that people with Parkinson’s “should receive co-ordinated multidisciplinary care”. This can include specialist support from Parkinson’s nurses, neurologists, geriatricians, allied health professionals including physiotherapists, speech therapists and occupational therapists, and care providers. 

Access to multi-disciplinary support for Parkinson’s is currently essential to improve self-management, limit any deterioration of symptoms, and lower the risk of exposure to COVID-19 (in the community or via hospital admissions). 

For these reasons, the UK Parkinson’s Excellence Network, are calling for Parkinson’s specialist services to be retained as a priority when managers and commissioners are making difficult decisions about staff redeployments. 

In particular, the role of Parkinson’s nurses is crucial during this period. And, the Parkinson’s Disease Nurse Specialist Association (PDNSA) and the Alliance of Scottish Parkinson's Nurse Disease Specialists (ASPNS) support the call for the retention of Parkinson’s nurse services during the pandemic.

If you need national or regional data and evidence to support your discussions about redeployment, the Service Improvement team can assist you. Please contact [email protected]

Jane Price, PDNSA Chair, adds: “Now is the time that our patients need their Parkinson’s nurses most, particularly as many may have missed out on planned reviews due to disruption or unavailability of their usual service.

Parkinson’s nurses play a crucial role in the clinical management of Parkinson’s symptoms. They should be a reliable and accessible point of contact for information and support during this challenging time - often having built trusted relationships with patients over a number of years.”

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

“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 £8 million to increase the number of nurse posts, as well as investing in nurse learning and development opportunities. 

“We know that many specialist staff 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.

“During the pandemic, we have stepped up the support we offer by increasing staff on our helpline, providing new online and printed information on coronavirus and Parkinson's and launching a new community Facebook group.

“But, 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.”

The crucial role of specialist services

During the pandemic, Parkinson’s nurses and other Parkinson's specialist services have assisted in self-isolation, symptom management and reduced both the risk of hospital admission and risk of extended hospital stays by:    

  • clinical management and support, including provision of therapy and exercise, via remote consultation
  • medication management - errors in medication, without specialist advice, can lead to adverse incidents and life threatening situations
  • 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
  • recognising and advising on Parkinson’s symptoms that could mimic COVID-19, such as loss of smell 

Support for healthcare professionals

For specialists teams, and all NHS staff right now, a focus on supporting mental health and wellbeing is essential. 

Many health and wellbeing resources are available at people.nhs.uk. These include confidential support by phone on 0800 06 96 222 (7am-11pm, 7 days a week), or by texting ‘FRONTLINE’ to 85258 24 hours a day.

Your employer may also have their own support offer in place. Check with your human resources team to see what's available.

Parkinson’s and coronavirus relevant clinical guidance and support tools for professionals are available in the Excellence Network resource centre

For Parkinson’s nurses, the Parkinson’s Disease Nurse Specialist Association (PDNSA) leadership can also contact other nurses for advice and peer support via the PDNSA website.

Professional coronavirus resources

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

More news for professionals

Keep up to date with what’s happening around the Excellence Network