Involving patient, carer and citizen networks

A range of citizen forums and networks exist across the NHS to ensure people’s voices are at the heart of the planning and delivery. At a national level, there is a growing number of forums that are delivered by, commissioned by or connected with NHS England and NHS Improvement (NHSEI).

NHSX and NHS Digital teams can work with these forums to seek views and inputs, by attending regular, scheduled meetings, by hosting webinars, by commissioning specific workshops, arranging interviews or other types of activity.

Many of these forums also have patient and public voice (PPV) partner representatives who attend bi-monthly meetings of the NHS Citizen Advisory Group. This group can act as a critical friend to help develop thinking and planning at an early stage.

However, you shouldn’t rely on the NHS Citizen Advisory Group or the individual forums as being the only part of your engagement strategy. Consider how you will include autistic people and people with a learning disability. Has information been produced in an easy read format? You can read more about involving autistic people and people with a learning disability on the NHS England website. You can also get further advice from the Learning Disability and Autism Engagement Team by emailing engage@nhs.net. There’s a need for wider consultation outside of these existing groups, and there are many other ways to involve people and communities in your work.

Whoever you choose to engage with, we encourage you to think about a long-term engagement strategy, rather than treating engagement as a one-off activity.

Work with an existing patient, carer or citizen network

If you are interested in working with one of the groups below, email england.engagement@nhs.net.

You will need to be clear about:

  • who you would like to engage with
  • how you plan for people to be involved in your work
  • what level you would like to see people and communities involved

Send through as much information as possible to ensure that a member of the team can help you most effectively.

Involving charities

Charities and community groups can act as advocates for patients and carers, and as networks and routes by which to reach and ‘recruit’ patients.

Where there are multiple charities with a stake in a particular service or area of work, it can be helpful to engage with broader third sector representative groups such as:

Principles around patient involvement apply as much to these forums and representative groups as they do for individuals.

Your organisation may already have established links within charities. Otherwise, if you want to discuss linking up with charities, please contact feedback@nhsx.nhs.uk.

Existing patient, carer and citizen networks

Existing networks include:

Representation within the NHS

NHS Citizen Advisory Group

The NHS Citizen Advisory Group brings together a diverse range of people who are committed to involving people and communities, to share knowledge, expertise and engagement approaches. Members are mostly patient and public voice (PPV) partners, or ‘experts by experience’, who are involved in NHS England and NHS Improvement work programmes, and those of other Arm’s Length Bodies (ALBs).

Internally, the Advisory Group acts as a critical friend within a safe space, providing constructive challenge and feedback on our work programmes, policy areas, and the engagement approaches used to inform them. Meetings of the group are relatively informal, and members are encouraged to share their reflections and feedback with colleagues who come to meetings.

Other organisations

Healthwatch England and Local Healthwatch

Healthwatch England is the independent national champion for people who use health and social care services. There is a local Healthwatch in every area of England. Healthwatch England supports local Healthwatch to find out what people like about services, and what could be improved, and they share these views with those with the power to make change happen. Nationally and locally, they have the power to make sure that those in charge of health and social care services hear people's voices and they also encourage health and social care services to involve people in decisions that affect them.

NHS Youth Forum

The NHS Youth Forum is now in its eighth year and brings together a diverse group of 25 young people to help shape healthcare policies and practices. NHSEI works closely with the British Youth Council (BYC), who are commissioned to deliver the NHS Youth Forum.

The young people are recruited from a wide range of backgrounds from across the country, often living with or having experienced a diversity of health conditions.

Each year the young people work on 3 different youth-led projects, as well as responding to a wide variety of requests for advice and input from across the whole organisation and beyond.

Read more about the NHS Youth Forum on the BYC’s website.

Older People’s Sounding Board

NHSEI supports the Older People's Sounding Board, provided in partnership with an external organisation. The sounding board enables older people to participate and inform NHS policy and practice, based on their shared experiences and insight. The board meets once a quarter (as well as having monthly themed conversations based on emerging policy or programme topics) and prepares papers on various policy issues that are of interest to them.

Leaning Disability and Autism Advisory Group and Forum

The Learning Disability and Autism Advisory Group reviews programmes of interest, such as budgets and social prescribing. It also helps NHS England and NHS Improvement with work that affects people with a learning disability, autism or both, and their families. The group is made up of 15 to 20 experts by experience, which includes people with a learning disability, autism or both, and their families. Members are used to speaking out and have lots of connections with local and national learning disability and autism groups. Meetings are held 3 to 4 times a year.

The Learning Disability and Autism Forum is a wider network of people with a learning disability, autism or both, their families, carers, and supporting organisations who want to have a say in the work of NHS England and NHS Improvement. This includes:

  • organising a meeting of the forum on an annual basis
  • 3 easy-read newsletters per year, sharing what the forum is doing to make the NHS better for people with a learning disability, autism or both

LGBT+ Sounding Board

The LGBT+ Sounding Board is a new forum that will be starting in Q3/Q4 of 2021/22. The Sounding Board has been commissioned by the Public Participation Team and the LGBT+ Health Team. The new delivery contract has recently been awarded to a partnership of LGBT+ organisations, being led by the LGBT Foundation.

Citizens on the Margins

Citizens on the Margins is a forum of people who often face marginalisation and higher health inequalities, such as those who use drugs, domestic abuse survivors, sex workers, refugees and asylum seekers, ex-offenders, and people experiencing homelessness. If we get digital services right for these groups, the chances are we get it right for the rest. NHSEI can support the commissioning of engagement sessions through ‘Working with Everyone’, who deliver and support this forum. There is an associated cost for organising and running workshops, with the amount depending on what is needed.

Find out more about Working with Everyone.

Commitment to Carers

This is a new group, currently in the process of being set up. More information will follow, once the group is established.

Families/Parents/Carers Forum

This forum is currently in its infancy, and its name is yet to be confirmed. So far, it has brought together interested partners. At the first workshop, it was agreed that the forum would be limited to parents of young people under the age of 25. The forum is being established to engage families/parents/carers in the work of the Children and Young People’s Transformation Board. It will help families to have a voice in the shaping and delivery of the objectives set out in the board’s long-term plan. More information to follow.

Cancer Alliances

The Cancer Alliances (of which there are currently 19) bring together different stakeholders to achieve their ambitions. Targets for improvement for patients with cancer across England include:

  • early diagnosis
  • survival rates
  • quality of life
  • patient experience