Built on partnerships: we dig deeper into the Parkinson's Excellence Network

News
10 Dec 2021

Launched in 2015, the UK Parkinson's Excellence Network began at an event in Leeds where healthcare professionals came together to formally recognise the strength that comes from sharing good practice, providing support and working to common goals.

Parkinson's Academy spoke with consultant geriatrician Professor Richard Walker, who has been with the Network from that first conference, and Rowan Wathes, Associate Director of the Excellence Network, to find out more about the Network's past and its focus today.

'We all have our own professional organisations - the British Geriatrics Society, the Association of British Neurologists, the Parkinson's Disease Nurse Specialist's Association, organisations for various allied health professionals - but this is one that brings everyone together. It's unique in that it brings people with Parkinson's and their carers into the work as equals.'

Prof Richard Walker

Initially identifying a handful of core areas to focus on - including Richard's own group looking at under-served communities within Parkinson's care - and launching working groups to address these needs, the grassroots Network has continued to grow to encompass Parkinson's specialists at every level.

Today, it is clear that the Network's core strength lies in its partnership mentality, and the impact that these partnerships can have at a national, regional and local level in effecting change and improving outcomes for people with Parkinson's.

'This Network is for everyone, in terms of healthcare professionals and people affected by Parkinson's. There isn't a hierarchy. I hope that everyone feels they're equal within this, that everyones' voice counts.'

Prof Richard Walker

Meaningful partnerships

The Network's current priorities have been identified using the recent 2019 Parkinson's UK audit, drawing on the amassed evidence across clinical practitioners and people affected by Parkinson's to inform the areas of greatest need (fig 1). These contribute to the delivery of the ‘Better support, every day’ theme of the Parkinson’s UK strategy.

Figure 1: Parkinson's Excellence Network national programmes, taken from the PEN slideset

Whilst working closely with Parkinson's UK and able to draw on the evidence they gather, this is very much a partnership rather than an ownership, which sits squarely with healthcare professionals who volunteer their time and energy where needed, and who align their working goals with the Network's values.

'The assumption is that the Network is owned by Parkinson's UK - and there's no doubt that without them it wouldn't work - but the value in it, from shared ideas and from driving local change - that comes from clinicians and people with Parkinson's.'

Richard Walker

As with all partnerships, there is a benefit to both organisations, as Rowan shares clearly.

'This is a two-way thing. As Parkinson's UK, we're representing people with Parkinson's and we can benefit from engaging with the Excellence community to improve services and outcomes for people with Parkinson's.

At the same time, we're supporting people within the Network. We support health and social care professionals with the data, learning opportunities and tools they need to thrive in an ever-evolving health and care system. We also play a pivotal role in building up the workforce, for example through our work in pump-priming specialist Parkinson’s posts.'

Rowan Wathes

Historically, the Excellence Network has pump-primed specialist nursing posts, but recently the network has also funded Parkinson’s practitioner posts and a Clinical and Research Fellowship in Cumbria (a region that has historically struggled to recruit medics).

The importance of partnership is highlighted further when viewed alongside the Network's underpinning principles, of which 'To involve people with Parkinson’s at every stage' is the first. Rowan explained how partnering with people with Parkinson's is integral to the work of the Network, and how individuals affected by Parkinson's have an equal role on the national steering groups and increasingly within regional networks, and in contributions at a local level.

'As an example, the programme for the 2021 Excellence Network conference (held on 4 November 2021) was co-designed with people with Parkinson’s. Each session was co-chaired by a person living with the condition.'

Rowan Wathes

After a discussion of what meaningful involvement can look like and the importance of having involvement from people with Parkinson's who can take a broader view of the issues being addressed, Richard shared the incredible work done by Jane Rideout who lives with Parkinson's and led the Regional Network for the Southwest of England until recently. He also gave a clear example of how people with Parkinson's bring a unique perspective and understanding as well as an ability to communicate in ways that healthcare professionals cannot.

'It's critical to have people with Parkinson's in any working group. With the work we did around under-served groups, it was difficult to engage anyone within the care home community, but it was also essential to get the patient and carer perspective. As clinicians, we're not allowed to advise about different care homes, and this was a great space for patient advocacy - there are things that people with Parkinson's and their carers and loved ones can achieve that we just can't.'

Prof Richard Walker

It can be difficult to find people who are both willing and able to partner with professionals to effect change, but Richard notes that 'proactive people often self-select themselves'. As an example, he spoke of Omotola Thomas, a younger woman with Parkinson's who is originally from Nigeria, and who has now contributed a great deal to the Parkinson's community as a spokesperson.

'She provided incredible insight into work that was done in London around the importance of understanding cultural and ethnic backgrounds when seeking to support people with Parkinson's well.'

Prof Richard Walker

Local services, national improvement - sharing learning to instigate change

The grassroots initiative from healthcare professionals operates at three levels - national, regional, and local. With multiple disciplines involved at each level, information is shared both top-down and bottom-up, depending on what is most appropriate.

'Sharing local or regional practice nationally is so important. We might - for example - have a problem with identifying and tracking inpatients, whilst another area has a brilliant system for doing that. Rather than reinvent the wheel, we can learn from them and do what they're doing, or a variation on it.'

Prof Richard Walker

A local initiative might be shared at a regional meeting and then be featured at a national conference or in the Network's newsletter, whilst national evidence or guidance might be shared at a regional level and then used to implement change locally by individual teams. Any network is only as strong as its members and it is through partnership working that the Excellence Network can really benefit those with Parkinson's.

Bone health

One of the priorities of the network this year is bone health. Highlighted as an issue by the Parkinson's UK's 2019 audit, and known to be an issue clinically, the work around bone health has led to a national piece of work to develop a clear guidance framework for supporting bone health in Parkinson's in the form of a flowchart.

'We have a national advisory group developing this with representation from experts in the field and people with Parkinson's. We've developed a tool to help clinicians systematically manage fracture risk, which is now being piloted in 47 services across the four nations.'

Rowan Wathes

The bone health improvement initiative highlights evidence that people with Parkinson’s are more than twice as likely to have osteoporosis and are twice as likely to have a fracture than those unaffected with 50% of fractures in Parkinson's hip-related. In addition, 50% of people with Parkinson’s report falling more than once during a 3-month period and 13% report falling more than once a week. Finally, the evidence shows that fractures are a major cause of emergency hospital admission for people with Parkinson’s, who are more than twice as likely to be hospitalised due to a hip fracture than those without Parkinson's.

'There's evidence that bone health's a problem and evidence that we're not very good at looking after it. It sort of falls between primary and secondary care, but as geriatricians, we have the specialist knowledge to do something about it. It's so helpful to have clear, evidence-based guidance and practice-based examples that we can use to instigate change.'

Prof Richard Walker

Driving

Driving and Parkinson's is another area of care and support that can be challenging to manage well. Evidence on whether a person with Parkinson's can drive safely is self-reported, or relayed by a carer, and much of a person's safety around driving is to do with personal insight and good self-management.

Richard shared how meaningful it was to listen to people with Parkinson's at a national meeting as part of research into driving, noting that individuals shared insights into their condition and driving in an open and honest way, as perhaps they would not be likely to do in a consultation.

He highlighted the benefit of hearing how people manage themselves by driving in 'on' times, for example, or have an awareness of how their impulse control disorder leads to faster driving. This, coupled with people with Parkinson's hearing how a driving assessor aims to enable them to adapt whilst still keeping their independence, was helpful to everyone in the room.

The paper resulting from this work, when reviewed alongside recent driving assessment guidance which has come out of a working group in Wales, demonstrates the benefit of sharing local work at a national level, creating a combined body of evidence which can in turn improve working practice or patient outcomes.

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