Developing a patient group with the Wishing Well Project
Aims
The primary goal of the programme was to encourage, support and develop well-being and confidence for people living with chronic wounds and lymphoedema.
We focused on gaining new skills and having peer support, through the process of co-producing within the structure of a supportive arts programme.
The project was seen as a platform to enable the formation of a strong, sustainable, and empowered patient group at the centre of clinical delivery.
Description and background
Over the last 10 years Accelerate has grown at a rapid rate. One of our key objectives, which is seen as core to our clinical services, is to develop an established patient group and to add value and reinvest in the population that we manage.
Over our 10 years of service development, we have been unable to maintain a patient group for a sustained period because groups have formed and dissipated and there have been ongoing challenges with support and facilitation from our organisation.
We were concerned as we moved towards the end of the peaks with the pandemic, that it was clear talking to our patients that isolation had adversely affected many areas of their lives. Some of the key themes within their narratives are social isolation, limited activity, and ambivalence to self-care.
The clinical services team had the desire to support development with a strong and sustainable patient group.
The reason for proceeding with this type of programme was that it could provide a supportive solution to the perception and experience of life with lymphoedema.
The content of the programme was driven by the participants, a community of people living with lymphoedema.
We recognised the importance and value of supporting our lymphoedema patients to lead fulfilling lives, which cannot always be achieved through understanding of the condition alone. By engagement with their bodies through unique and bespoke movement as well as sharing their stories, the participants were empowered to manage their own health and wellness journey.
The service and patient group worked in partnership with an established Arts in Health company, Rosetta Life, to devise and deliver a performance piece.
Rosetta Life were a perfect partner as they have a history of working with groups with life limiting illness and neurological disability and they have a unique patient ambassador feature within the programme which had been refined over the years.
Programme overview
- 12-weekly workshops led to a creative performance
- Delivering the patient performance to conferences / support groups and venues
- Training members of the group to become connectors or ambassadors for the development of other groups or projects
Watch a short version of the performance – 5 mins
Watch the full performance – 27 mins
Evaluation
The group united immediately, completing the full 12-week programme and ambassador programme. The impact of the performance piece instilled confidence and a sense of community within the group.
Non-traditional exercise through movement and breath exercise was also reported to have a long-lasting, positive impact on their overall physical and mental well-being.
Group achievements and next steps
- Two external performances have been completed
- A group representative was part of a stakeholder interview for a senior member of staff within our team
- Group representatives attended a wound healing conference in East London and participated in a seminar in August 2022
- The group attended an external residency at The Place in Euston 1st-5th August to refine the performance piece working in collaboration with external ambassadors
- The group have begun a patient-led step-down programme to enable prioritisation of their next steps as a fully formed patient group. The group are ambitious and focusing on their terms of reference. Early indications are that they would aim to extend the group and focus on a patient awareness day
References
- Braithwaite, J, Mannion, R, Matsuyama, Y, Shekelle, PG, Whittaker, S, Al-Adawi, S, Ludlow, K, James, W, Ting, HP, Herkes, J, McPherson, E, Churruca, K, Lamprell, G, Ellis, LA, Boyling, C, Warwick, M, Pomare, C, Nicklin, W, Hughes, CF, 2018. The future of health systems to 2030: A roadmap for global progress and sustainability. International Journal for Quality in Health Care 30, 823–831.
- Mortimer, F, Isherwood, J, Pearce, M, Kenward, C, Vaux, E, 2018. QUALITY IMPROVEMENT Sustainability in quality improvement: measuring impact, Future Healthcare Journal.
British Lymphology Society (The BLS) Conference
Caitriona O’Neill, Director of Clinical Services and Lymphoedema from Accelerate was delighted to present a poster for this conference about the Wishing Well project.