Driving change through multi-level engagement: Parkinson's Excellence Network

A recent reshuffle of the Clinical Leadership Team for the Parkinson's Excellence Network, alongside the creation of a new director for engagement within that team, have provided a fresh focus across their four national programmes. We chatted to Associate director of the Parkinson's Excellence Network, Rowan Wathes, and new director Jonny Acheson, to learn more about their priorities across time critical medication, bone health, integrated multidisciplinary care and the nursing workforce.

'Parkinson's services can be proactive or reactive; we need to change the focus to being more proactive,' explains Jonny, an emergency care consultant who lives with Parkinson's. This shift is challenging in an under-resourced and overstretched NHS, but the push to encourage and support it is evident.

Beginning his role as Director of engagement with the Network in September, Jonny's remit is broad: to improve engagement with the national programmes across healthcare professionals, policy leads, NHS management and people with Parkinson's to improve traction on the Network's priorities. 'I'll engage with anyone who is willing to engage with me!' he quips.

Time critical medications

This is particularly evident in the work he has already done around the 'Time critical medications' programme. Perhaps better known to many within the context of the 'Get it on time' campaign, its name now better highlights the urgency of the situation. It is accompanied by a fresh approach to the programme which cements the original campaigning element between influencing policy and service development to create tangible change at both a national and local level.

Jonny describes the dual approach that the Excellence Network is taking, with both top down and bottom up strategies. Top down, every Chief nurse across the UK, as well as key representatives in NHS England, including Professor Stephen Powis (National medical director of NHSE), have been approached and they have all agreed to commit to implementing changes around this issue.

At a grassroots level, tools and resources to compliment those that are already available are being developed for use in emergency and elective pathways.

Better bone health

Jonny's engagement role is being maximised in the Better bone health programme too, where the focus has turned to awareness raising amongst people with Parkinson's. Bone health became a national priority after the findings of the 2019 Parkinson's audit, and the Excellence Network supported the rollout of a service improvement programme, which involved 44 services across the UK to improve bone health for people with Parkinson's, reported on earlier this year.

They are now targeting messaging for people living with Parkinson's to increase awareness of its importance, and of how individuals can support their own bone health. They have developed a short video aimed at the public, and will be running a ‘Ask the experts Q&A session’ later this year in partnership with the Royal College of Osteoporosis.

Integrated multidisciplinary care

A multidisciplinary approach is vital when managing Parkinson's as set out in the Excellence Network's vision, and they are now working on the practical support needed to make this vision a reality for everyone with Parkinson's living in the UK.

With a separate programme dedicated to nursing, their focus for multidisciplinary engagement at present is on therapists. From their induction course for therapists, which trained 161 therapists earlier this year and will run again in 2023, to the new allied health professionals (AHP) pump-priming scheme to get more specialist AHP posts embedded in the NHS, a deal of effort is going into ensuring physio, occupational health and speech and language are accessible to people with Parkinson's across the UK.

The Parkinson's nurse programme, 'Fit for now and the future' is arguably one which has had much of the focus in recent years. It was quieter in its outputs this year, however. The Steering Group, chaired by specialist nurse Prof Annette Hand, took some time to review its priorities and revitalise its approach for 2023.

A multidisciplinary approach is vital when managing Parkinson's as set out in the Excellence Network's vision, and they are now working on the practical support needed to make this vision a reality for everyone with Parkinson's living in the UK.

With a separate programme dedicated to nursing, their focus for multidisciplinary engagement at present is on therapists. From their induction course for therapists, which trained 161 therapists earlier this year and will run again in 2023, to the new allied health professionals (AHP) pump-priming scheme to get more specialist AHP posts embedded in the NHS, a deal of effort is going into ensuring physio, occupational health and speech and language are accessible to people with Parkinson's across the UK.

Parkinson's nursing workforce

The Parkinson's nurse programme, 'Fit for now and the future' is arguably one which has had much of the focus in recent years. It was quieter in its outputs this year, however. The Steering Group, chaired by specialist nurse Prof Annette Hand, took some time to review its priorities and revitalise its approach for 2023.

Jonny, presenting a valuable perspective spanning both sides of the professional / patient coin, is clear that the nurse workforce is under considerable strain and that the Excellence Network needs to work to support existing Parkinson's nurses, and support the engagement and development of the next generation of nurse specialists.

Jonny suggested that the next World Parkinson's Day might be a good opportunity to put the focus on the amazing things that Parkinson's healthcare professionals do. It was on a World Parkinson's Day that Jonny first began thinking about Parkinson's and the workforce more strategically. His 'Who we are' campaign in 2021 reached out to healthcare professionals living with Parkinson's, encouraging them to speak out and come together. It was then World Parkinson's Day in 2022 that launched the shift to 'time critical medication'.

In brief: highlights across the priorities

Time critical medications:

• Letters sent to every CEO and health board executive across the UK

• NHS England representative committed to the programme's steering group

• Care pathways and other tools and resources in development

• Discussions with other organisations representing conditions where medication is time critical to develop an NHS training programme.

Better bone health

• The report across the 44 service improvement projects can be found online.

• A second 'light touch' wave is being offered for those healthcare professionals looking to work on bone health service improvement - sign up to the newsletter for more information.

• A practical tool for clinical use which builds on the BONE-Park algorithm is currently in the pipeline for 2023.

  • the BONE-Park algorithm can be found here, whilst other service improvement projects carried out within a Parkinson's MasterClass are documented in 'Supportive Skeletons (2022)'.

Multidisciplinary care

• An online induction course for therapists trained 161 allied health professionals this year and will run again in 2023.

• A new pump-priming scheme is receiving business cases for a variety of therapist roles to inject much needed multidisciplinary support into the workforce.

• A project to support and analyse 6 multidisciplinary accelerator sites, in collaboration with Sheffield Teaching Hospital.

• A project with University College London to review the health economic case for integrating mental health services with Parkinson’s services.

Parkinson's nursing workforce

• Almost 2 thirds of the Parkinson's nursing posts currently in place were pump-primed by Parkinson’s UK.

• There are currently very high specialist nursing caseloads in the UK; NICE guidance has removed the recommended caseload of around 300 from its policy documents, yet this