NHS England is consulting community members and community-led organisations on their Long Term Plan. The Local Healthwatch in Hounslow has been commissioned to undertake consultations to hear from "disadvantaged groups" about their experiences with the NHS.

Being consulted is not a new experience for our partner organisations on the Active Lives, Healthy Minds project, a mental health and wellbeing project that is being implemented in West London focusing on the Eritrean, Nepalese, Somali and Tamil communities. Many community-led organisations feel frustrated with what often feels more like tick box exercises rather than genuine involvement that leads to improved services and reduced inequalities. Consultation fatigue is a serious thing.

While we are content to see a move away from just using online surveys (which leads to digital exclusion) to consultation meetings, much needs to improve before community organisations and members are taken seriously and respected for their expert knowledge and experiences.

If NHS England are to genuinely improve services for people from Black Asian Minority Ethnic and Refugee (BAMER) communities, they will need to consult effectively but also make changes to service commissioning and delivery in response to the findings.

These are our recommendations for meaningful engagement with refugee communities:

  • Involve community organisations and members from the very start of the process and in the design of the consultation
  • Take serious action to reduce the power imbalance between those experiencing mental health inequalities and those making decisions about their care and running consultations
  • Value the contribution of community organisations and their members equally to those of professionals
  • Commission community organisation directly or in partnership to do the work
  • Offer appropriate support and training to community organisations and their members to do the work
  • Respect the time that coordinators, activists and community members take to provide their expert feedback
  • Pay community organisation and members for the organisation of the consultation and for sharing their expertise and experiences. Community coordinators are expected to do the work of recruiting community members without any reimbursement, taking away from their pressured time available to support community members.
  • Budget for reimbursement for travel to the venue.
  • Budget for financial resources to rent local community centres for the consultation. Many refugee-led community centres are struggling to keep their head above the water and keep their centres running.
  • Provide a clear statement of the purpose of the involvement and how this may improve health and mental health services for people from a refugee background and make a difference to their lives.

For a good guidance on involving service users and carers read National Survivor User Network (NSUN)’s 4Pi National Standards. These standards have been developed by people with lived experience as part of the National Involvement Partnership (NIP) project and ensure effective co-production, thus really improving experiences of services and support.

If you are a community-led organisation or activist and you would like to comment on or add to this list, please get in touch with Laurie Lijnders, our Project Manager on the Active Lives, Healthy Minds project at