A review of Transforming Care After Treatment (TCAT) programme activities over 2018 for our annual report.
The TCAT programme has successfully concluded and published a final report that captures the learning from the programme to support others hoping to set up projects involving people in decisions.
The TCAT programme provided an opportunity to push the boundaries further so that user involvement could be defined in terms of the amount of influence exerted by users in decision making processes throughout the programme. This needed to be achieved without passing judgement on different experiences of involvement, which staff and users may bring with them to the programme, so an aspirational approach was described, encouraging staff and users to go beyond involving to influencing, so people with experience of cancer genuinely participate in decision-making processes.
Strategically, a national group consisting of patients and carers with recent experience of cancer pioneered a consultative role within the programme. Called the Cancer Experience Panel (CEP), this group has been an integral part of steering the programme.
The CEP has played a significant and influential role in the development of TCAT. Some key examples of this include:
- Sharing responsibility for the project funding process. The panel shared responsibility for decisions about project funding on an equal basis with professionals.
- Working with the TCAT programme evaluation team to ensure the effectiveness of user involvement within TCAT gets measured. The final report demonstrated the success of the User Involvement model used by the Panel and was another co-produced piece of work.
- Providing support to project volunteers and staff on how to make their user involvement effective. Peer to peer support to people with experience of cancer who were involved at local project level was an important part of the Cancer Experience Panel’s function and ensured responsibility for momentum and initiative in user involvement at project level did not rest solely with staff.
The achievements springing from TCAT user involvement, the valuable learning and positive outcomes, provide clear pointers towards future success in user voice. The remaining challenge is to ensure this legacy contributes positively to future developments in user involvement, from the perspective of people with lived experience as well as professionals.