User Involvement in Voluntary Organisations Shared Learning Group
SHARED PRACTICE PAPER 3:
PROMOTING SERVICE USER AND CARER INVOLVEMENT
WITHIN YOUR ORGANISATION
If your job is to promote and support service user or carer involvement in you
organisation, you’ll need to persuade colleagues of the importance of doing this. This
paper aims to share our experience of promoting service user and carer involvement
within an organisation, in order that it can become a mainstream activity. In this
paper, we focus on the experience of three member organisations: BLISS, Breast
Cancer Care and the National Council for Palliative Care, but also refer to the work
of a number of other member organisations.
How do members promote service user involvement within their organisations?
BLISS
BLISS is dedicated to making sure that more babies born prematurely or sick in the
UK survive and that each one has the best quality of life. BLISS aims to realise this by:
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supporting parents and families
promoting new developments and innovations in care
campaigning for improvements in neonatal care
BLISS has a project to support parents to get involved in the NHS, but to date has
done less work on involving parents within the work of the organisation. So Laura
Dunkeyson, the Innovations Projects Officer, set up a small working group to look at
this. The aim of this group is to develop an internal user involvement policy to cover
all aspects of BLISS’s work.
The group carried out an audit to see how BLISS staff were involving parents at the
moment, They were pleased to see that there was more going on than they thought.
The audit served to raise awareness of staff about the importance of involvement.
BLISS now plans to have user involvement targets for all departments.
Performance figures collected on a monthly basis will include information about how
users have been involved in BLISS’s work. It is hoped that collecting figures in this
way will prompt staff to think about involving users in every aspect of their work.
Breast Cancer Care
Breast Cancer Care (BCC) is the UK’s leading provider of information, practical
assistance and emotional support for anyone affected by breast cancer. Every year
the charity responds to over two million requests for support and information about
breast cancer or breast health concerns. All services are free.
BCC is committed to campaigning for better treatment and support for people with
breast cancer and their families. The charity’s vision is a world in which every person
affected by breast cancer gets the best treatment, information and support whenever
they need it.
Amarjit Kaur and Vicky Lane, who lead on user involvement for BCC, have set up a
Champions’ Group, chaired by the Chief Executive, to take forward user involvement.
It consists of 12 senior staff from across the organisation, and meets every 6 weeks.
The role of the Group is to champion user involvement. At each meeting staff are
required to report back on what they’ve been doing. The Group is also used to
showcase new or novel involvement that’s going on in BCC, and to demonstrate
different methods of involving people.
The Group has been a really powerful tool. It has been key in the adoption of:
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Key performance indicators about user involvement for every team
User involvement looked at within each staff appraisal
User involvement in the planning process
Vicky and Amarjit have also developed an internal communications strategy for user
involvement. This includes ensuring that user involvement is an agenda item at team
meetings. Vicky regularly drops in on different team meetings to keep the profile of
user involvement high. BCC has an organisation briefing once a week, and there is
always a user involvement slot, with key updates from different teams. This ensures
that the whole organisation is kept up-to-date on what’s happening.
Amarjit and Vicky have developed an intranet page on user involvement. They used a
consensus conference method to encourage staff to tell them what would be helpful to
include on the page. They produce a bulletin on user involvement that goes out to all
staff and an annual user involvement report to update on progress.
The National Council for Palliative Care
The National Council for Palliative Care (NCPC) is the umbrella organisation for all
those who are involved in providing, commissioning and using palliative care and
hospice services in England, Wales & Northern Ireland. NCPC promotes the extension
and improvement of palliative care services for all people with life-threatening and lifelimiting conditions. NCPC promotes palliative care in health and social care settings
across all sectors to government, national and local policy makers.
Jo Black, the Project Manager for User and Carer Involvement at NCPC, looked at
how her organisation is structured and, planned user involvement to ‘match’ this
structure. One of the key ways NCPC works is through a number of policy working
groups, which look at palliative care in different areas ( for example cancer,
neurological conditions and older people). Each of these groups has a different
approach to and history of user involvement – so the cancer group has a history of
involving people affected by cancer because cancer is an area where this has
traditionally happened. This means that Jo has adopted different approaches with
each working group, developing user involvement at a pace that’s appropriate to each
group. She keeps user involvement on the agenda by going along to each working
group meeting, and she encourages the group to build on activity already undertaken
or issues already discussed.
Jo has produced a profile of each policy area, detailing who NCPC is trying to engage,
who is affected by a condition, which organisations are working with these people and
what the barriers might be to working with these people. For example, if a group is
working on palliative care for people with neurological conditions, Jo will be aware of
the charities and self-help groups working in this area. One of the barriers might be
mobility – so it may be more appropriate to involve people in ways that do not involve
lots of face-to-face meetings.
Lessons about promoting user involvement internally
We identified a number of lessons that have been learned across these and other
member organisations. These are:
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It’s essential to build good, constructive working relationships with other staff
Start with where people are, and not where you think they should be
Don’t tell people what to do – offer help and suggestions
Work at the pace of the people you’re working with – don’t try to rush things.
Encourage people to start by involving service users in a way that doesn’t
frighten them, and then build up the level of involvement as staff gain more
confidence
Senior level support is crucial –this might come from the chief executive, the
board and/or staff working at director level
Identify and support your champions – wherever they are within the
organisation
It’s important to have a strategic approach to user involvement. But you then
need to ensure that the strategy gets put into practice. This is likely to involve
attending lots of team meetings to encourage staff to take this issue forward.
Buy-in from the HR team is important if you want to include user involvement
within job descriptions, objectives and appraisals
You need to be honest with colleagues about the support you can offer and
about the fact that involvement isn’t always easy and can be challenging and
time consuming
Recognise that this work is about culture change – this means it will take a
long time
How some other member organisations promote user involvement within their
organisations
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Breakthrough is developing a toolkit for staff
The British Heart Foundation runs user involvement ‘taster’ training sessions
for 2 hours to give staff an initial taster about user involvement. This has
worked well.
Rethink has supported service users to deliver a one day raining course for
staff.
User Involvement in Voluntary Organisations Shared Learning Group
June 2008