Agenda item

To consider an update on the role and impact of the Trust's Lived Experience Directors.

The Committee received a Lived Experience and Co-creation presentation (circulated in advance) from representatives of Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV), which included an update on the work and impact of the Trust’s Lived Experience Directors.  Introduced by the TEWV Assistant Chief Executive, and supported by colleagues including the TEWV Lived Experience Director for Durham, Tees Valley and Forensics, content highlighted:

 TEWV Journey to Change – Progress

 The role of our Lived Experience Directors

 Durham, Tees Valley and Forensic Co-creation Board – Terms of Reference

 Co-creation Board – Overview / Early Action Areas

 Lived Experience Forums – Aims / Journey So Far / Future Plans

From the beginning, it was emphasised that a lived experience and co-creation focus was at the heart of everything which TEWV was doing, and that this approach was a crucial feature of the strategic and cultural shift within the Trust which began a couple of years ago (indeed, co-creation was one of the five key pillars identified).

Reflecting on a poor personal experience of past care and a subsequent desire to help others have more positive involvement with health services, the TEWV Lived Experience Director for Durham, Tees Valley and Forensics gave a brief outline of the role, a vital element of which was to check and challenge ongoing provision to ensure the patient voice was heard.  Driving forward what patients / carers wanted to see was fundamental, though it was important to acknowledge that TEWV were just one member of the overarching mental health offer, and that partnerships with other relevant organisations (e.g. Rollercoaster, Pioneering Care, etc.) were also significant.

A critical aspect of the Co-creation Board was around the concept of how people can challenge and speak to ‘power’ – to this end, membership included service-users, patients and carers, as well as TEWV staff.  A host of aims and objectives were outlined, central to which was the creation of safe, informal creative spaces where people were equal, could speak openly and honestly, and could challenge the status quo.

Aided by representatives of two voluntary, community and social enterprise (VCSE) organisations, Red Balloons and Starfish Health and Wellbeing, an overview was given of Lived Experience Forums – collaborative platforms for using people’s experience and knowledge to help services be the best they could be.  With the intention of being independent from such services, seeking and enabling input from a wider cohort of voices also fed into the community transformation agenda.

Already established in Stockton and Hartlepool, work to ensure Forums were operational across the whole Tees Valley footprint continued.  In addition, the recent Lived Experience Conference which took place in June 2023 was highlighted – a collaborative event which celebrated numerous Tees Valley organisations and used lived experience to inform future service delivery.  From a TEWV perspective, listening and acting upon the work of the Forums represented an approach which went beyond the usual meaning of ‘engagement’ and was being adopted across all levels of the Trust.

The Committee was highly encouraged to hear of the work of the Lived Experience Forums and asked a number of questions around their composition and meetings.  In response, Members were informed that anyone 16+ can attend and that for those who cannot physically be present, other mechanisms (emails, surveys, etc.) were used to connect individuals.  There was also a dedicated lead for the younger Forum cohort as it was recognised that the usual adult model of connecting may not always be appropriate.

The value and importance of the Forums being independent from services was emphasised by the Committee who also queried where people were being referred from.  Members heard that Red Balloons and Starfish Health and Wellbeing were linked-in with Catalyst (as the conduit for the wider VCSE sector), Stockton-on-Tees Borough Council (via an employee with lived experience) and TEWV (utilising a mailing list of around 200 individuals which information was relayed to) – a video had also been produced to highlight the Forums and invite input / attendance.  TEWV officers noted that its Lived Experience Director was trying to be an enabler for the charities’ endeavours and that the Trust wanted them to be involved in some programmed TEWV work too.  The importance of connecting voices to wider mental health provision (not just TEWV) was emphasised, possibly via the new Tees Valley Integrated Care Partnership (ICP) ‘place-based’ group.

Involvement from Healthwatch into each of the Forums was noted, and it was stated that should any individuals wish to lodge an official complaint to a service, Healthwatch was there to support / signpost.  TEWV officers added that the Trust had partnered with Healthwatch for its community transformation work as it attempted to seek views from those who did not already access its offer.

Highlighting a case of a retired older person struggling to get mental health support, the Committee probed whether older adults were getting appropriate access to services and were having their voices heard.  In response, it was confirmed that there was no upper age limit for involvement in the Forums and that older adult support was certainly available depending on an individual’s circumstances.  Members were encouraged to relay relevant details of any specific cases which could be followed-up outside of this meeting.

Finally, the Committee commended the Lived Experience Conference initiative and welcomed any feedback which could be provided on this annual event.  It was stated that Members were very much welcome to future conferences, particularly those with lived experience themselves.

AGREED that the Tees, Esk and Wear Valleys NHS Foundation Trust update on Lived Experience and Co-creation be noted.