Involving Service Users & Carers
Engaging service users, experts by experience and carers is vital not only for the improvement of services and the quality of care that they provide but also in adding value to people’s lives. The value that these individuals bring is a result of having first-hand experience with mental health issues and engaging in treatment for the issues.
Many IAPT services have strong service user and carer input and engagement, in various roles and for different functions – for example:
Southwark co-produced an African/Afro-Caribbean wellbeing workshop with the established IAPT Independent Advisory service user group.
Kensington and Chelsea’s ‘Community Living Well’ service was co-produced with service users and carers. They are still very much involved – there is a ‘Board of service users’ for Community Living Well (patients commit for at least a year, and are paid for their input), as well as a service user focus group for IAPT which requires less commitment – case study
In Waltham Forest IAPT, service users sit on job interview panels. Discussions are ongoing on further engagement with service users.
Bromley IAPT invite all service users who have completed a course of treatment or assessment, to be an associate with the service for 1-2 years. Associates participate on recruitment panels, are trained to facilitate focus groups and speak at PWP training courses. They are paid for their engagement and it helps develop their skills for future employment.
Hammersmith & Fulham service users actively participate and contribute to service redesign and also sit on recruitment panels. The service users are paid for their engagement.
Camden and Islington have ‘Advisory Groups’ of service users and carers which meets every few months, to advise on a variety of topics – for example the website content and design. When service users complete their IAPT treatment they are asked whether they would like to be involved in the Advisory Group; there is a waiting list to be part of the groups. Feedback from the Advisory Groups has resulted in ‘discharge packs’ produced for service users including signposting to other services, and also the creation of peer wellbeing workers (experts by experience who support groups and workshops, and tell other participants how they found the therapy, which can alleviate anxieties) – case study
Merton Wellbeing service has a service user forum; service users co-design, produce and co-deliver workshops. The service has also polled residents through social media and the ‘Nextdoor’ website requesting for topics that they would like discussed via webinars or workshops.
Newham: In response to patient feedback the service set up groups for patients to share learning after completing their treatment.
Bexley set up a Recovery College in June 2014 with the aim of ‘empowering people with mental health problems to become experts in their own recovery.’ The college courses and workshops help individuals develop their skills, understand their own mental health, identify personal goals and ‘support access to opportunities’
Lewisham IAPT have used a local Independent Advisory Group of residents to understand the concerns of the ethnic minorities’ community and the lack of trust in local MH services by that group. They have undertaken a Quality Improvement project with that group to improve pathways and ensure that questions and examples used in therapy are ‘culturally sensitive’ for the local ethnic minority community – Case study
Greenwich are recruiting a Lived Experience Practitioner (LXP) to increase service user involvement and setting up peer support groups for people when they finish their treatment.
Touchstone – Leeds IAPT work with refugees has been very effective in engaging with this community and offering them Step 2 skills workshops for mindfulness and managing anxiety as part of a pilot. The new re-contracted IAPT service have also created new posts Mental Health Support Workers who have a focus of working with different communities to liaise with community groups to understand the current barriers to referral and to lead ‘helpful conversations’ with groups about what the service can offer. To do this they will be carrying out drop ins in the community alongside peer supporters to help de-stigmatise accessing mental health support.
County Durham perinatal IAPT service is going to have a ‘mum champion’ co-facilitating the group therapy sessions run for new mums.
Touchstone – Leeds IAPT are a newly commissioned service which represents an example of IAPT+ service bringing together Primary Care, MH services and two charities supporting perinatal work. The service has been developed to include a new focus on co-production and integrating lived experience through peer support. The Peer Support team has a co-ordinator, 1 peer and volunteer development worker, 2 paid peer support workers and currently have 28 volunteers to support those who are going through therapy. They have developed their own resources to share lived experience across the service and de-stigmatise accessing support, including newsletters, blogs and videos explaining their journeys and in some cases their experiences through the service.
- Some services have set up patient forums, but nobody attends.
- Peer wellbeing workers (experts by experience who run support group therapy sessions or workshops) require lots of supervision and support, which is time-consuming for the PWP.
- 4Pi National Involvement Standards developed by people with lived experience as part of the National Involvement Partnership (NIP) project. The 4Pi National Standards ensure effective co-production, thus really improving experiences of services and support. The framework established some basic principles to encourage people to think of involvement in terms of principles, purpose, presence, process and impact (4Pi). IAPT services can draw from this resource to further enhance engagement with service users and carers.
- Case study: Lincolnshire IAPT – Involving patients to improve mental health care
- Case study: Oxfordshire, Bedfordshire, Luton and Milton Keynes Patient Forum