Between 2008 and 2010, PPI was limited by the ability to recruit service users. Following the establishment of PURSUN UK in late 2010, involvement activities increased across the programme. Furthermore, the methodology and focus of each work package have guided the nature of involvement.

The Pressure Ulcer Research Service User Network UK (www.pursun.org.uk) has a minimum of two management meetings a year at which a core group of the most active members consider the direction of the network, the terms of reference, recruitment, the website and other network materials. Research involvement opportunities are sent out by way of the mailing list, as they arise. For example invitations to help interpret data, become co-authors or input into the study methods.

All members of PURSUN UK are prepared for involvement through a minimum of one induction meeting with the PPI officer (either in person or by telephone). During this meeting, service users are encouraged to discuss the skills and experience that they bring to the group, as well as any support that they may need.

The value of the Pressure Ulcer Research Service User Network UK to the service users involved

As a PURSUN researcher, I have definitely benefitted from the virtual conferences, Zoom calls and emails about Pressure Ulcer Prevention at Home, pressure relief and an app to help people with general healthcare. I’ll also be joining a focus group and I’ll be partly responsible for creating an app to ‘stop the pressure’. Delia Muir and Holly Schofield take turns leading the Zoom calls. I started my role as a PURSUN researcher in 2020, and I believe that Bermuda needs to be included in the network and the impact that it is making. Maybe I should start a sister branch there.

Wider impact of the Pressure Ulcer Research Service User Network UK

In addition to PPI throughout the programme, PURSUN UK has begun to impact the wider tissue viability and PPI communities. For example, members of PURSUN UK have been invited to speak about their experiences at several events.

Locally, this has included training for tissue viability link nurses, presenting to PURPOSE principal investigators, speaking at the launch of the NIHR Bradford Wound Prevention and Treatment Healthcare Technology Co-operative and working with medical students. Nationally, members have presented at the Tissue Viability Society conference, tissue viability education events and the INVOLVE (a national PPI advisory group) conference.

They have developed an effective model for presenting service users’ experiences in which the PPI officer, interviews a member of PURSUN UK in front of a live audience. This provides an alternative to a traditional presentation for people who do not feel confident presenting personal experiences in that way. This model has received very positive feedback from both audiences and the service users involved. They have found that real-life stories are extremely powerful and can create a common focus for professionals from a variety of backgrounds.

Collaboration with industry

Medical devices also play an important role in pressure ulcer prevention and treatment. With this in mind, PURSUN UK has collaborated with industry partners on projects such as education days and product development workshops. This collaboration has helped to diversify the involvement opportunities offered to PURSUN UK members and has been useful in terms of members’ personal development, as it has given people an insight into another aspect of tissue viability research. This work has also generated some funds for PURSUN UK, moving the network towards a sustainable model post PURPOSE.

Developing and sharing patient and public involvement methods

• the use of role play and video to facilitate PPI in the interpretation of data from the severe pressure ulcer study
• the adaptation of the Patient Learning Journey model for use in a research context
• the use of a live interview model as an alternative to traditional presentations
• the addition of a service user group to the consensus methodology used in the risk assessment study
• individualised support for steering committee members, including one-to-one debriefs with the PPI officer
• the integration of service user narratives into the dissemination of the quantitative pain studies.

Further developments include a completely new service user network, which has given them the opportunity to be creative in their approach and develop innovative involvement models. These models have been shared with the UK PPI community. The PPI model used as part of the severe pressure ulcer study, has been presented at three national conferences (Involving People Wales and Tissue Viability Society) and forms part of an INVOLVE video resource on PPI in data interpretation and analysis [see www.invo.org.uk/resource-centre/conference/involve-conference-gallery/ (accessed 20 February 2015)].

A video about the Severe Pressure Ulcer PPI event was also made by PURSUN UK and has been widely disseminated online [see https://youtu.be/bgg6zkbILrg (accessed 21st July 2015)]. The novel approach of using the Patient Learning Journey as a model for service users contributing to research rather than health education has also been included as a case study in the INVOLVE training and development guidelines [see www.invo.org.uk/training-case-study-13-2/ (accessed 20 February 2015)].

Supporting further research

http://medhealth.leeds.ac.uk/info/423/skin/1717/pressure_2 (accessed 31 August 2015). www.jlapressureulcerpartnership.co.uk (accessed 20 February 2015).

A website has been developed by PURSUN UK www.pursun.org.uk (accessed 20 February 2015).

In addition, PURSUN UK has contributed to the international consensus document Optimising Wellbeing in People Living with a Wound, published by Wounds International www.woundsinternational.com/clinical-guidelines/international-consensus-optimising-wellbeing-in-people-living-with-a-wound (accessed 20 February 2015).

Working with service users has also enabled them to more effectively engage with local and national media. Yorkshire Evening Post www.yorkshirepost.co.uk/news/at-a-glance/general-news/yorkshire-group-spearheads-bedsores-care-drive-1-3786988 (accessed 20 February 2015).

Daily Mail www.dailymail.co.uk/health/article-2093904/Bed-sores-How-does-local-hospital-compare.html (accessed 20 February 2015).

https://www.ncbi.nlm.nih.gov/books/NBK321107/#s2-5