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

News
08 Nov 2022

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.

'Time critical medication access is an issue for a number of different conditions, including diabetes and epilepsy, and it's something that really needs to be addressed in medical and nursing training. We're working at various levels to make that happen.'

Jonny Acheson

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.

'We need to engage emergency services - it's not just about on the wards. With the time delays in A&E, a person with Parkinson's might have needed 2, 3 - even 4 - doses before they even get assessed and ultimately admitted to a ward. Those delays can lead to falls, a failed physio assessment, longer stays - it has a really significant impact.'

Jonny Acheson

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.

'We're really thrilled with the national service improvement project. Quality improvement methods were applied to increase knowledge among Parkinson’s healthcare professionals about how to assess bone health in Parkinson’s, and to improve rates of assessing and treating bone health in Elderly Care and Neurology services. 1,131 people with Parkinson’s were assessed by 80 healthcare professionals. Around three quarters of cases needed an updated assessment of bone health. The percentage of cases on specific bone health treatment increased from around 16% at baseline to around 26% at the end of the project. The treatments introduced in this project alone would be expected to prevent around three vertebral fractures and two non-vertebral fractures.'

Rowan Wathes

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.

'We recognise that the vision is ambitious but we’re committed to helping make it happen. We're currently working with 6 accelerator sites across the UK, which are working to transform their care pathways in line with the Network's vision. We’ve also had huge interest in the new AHP pump priming scheme, which is exciting.'

Rowan Wathes

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.

'We're extremely proud of the role the charity has played in developing the Parkinson’s nurse workforce. Over the past 3 decades, Parkinson’s UK has pump-primed almost two-thirds of all the Parkinson's nurse posts in the UK. Technically this means that everyone with Parkinson's now has access to a nurse, which is great. But there is still more to do. We know some nurses have a caseload of up to 1,000, which really affects the kind of support they can offer.'

Rowan Wathes

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.

'We recognise that the vision is ambitious but we’re committed to helping make it happen. We're currently working with 6 accelerator sites across the UK, which are working to transform their care pathways in line with the Network's vision. We’ve also had huge interest in the new AHP pump priming scheme, which is exciting.'

Rowan Wathes

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.

'We're extremely proud of the role the charity has played in developing the Parkinson’s nurse workforce. Over the past 3 decades, Parkinson’s UK has pump-primed almost two-thirds of all the Parkinson's nurse posts in the UK. Technically this means that everyone with Parkinson's now has access to a nurse, which is great. But there is still more to do. We know some nurses have a caseload of up to 1,000, which really affects the kind of support they can offer.'

Rowan Wathes

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.

'We need some really good promotion around Parkinson's nurses. They're the glue that sticks everything together, they are holistic and they treat the whole family.'

Jonny Acheson

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'.

'World Parkinson's Day often focuses on the people with Parkinson's. I think it's time that we use it to focus on professionals as well.'

Jonny Acheson

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.

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

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