Directorate of Women & Children’s Health
Community Children’s Health Partnership
Westgate House
Southmead Hospital
Bristol BS10 5NB
Tel: 0117 323 5360
Fax: 0117 323 5363
Trust website: www.nbt.nhs.uk/cchp
How to set up a parent participation group.
Specialist Service for children with a learning disability parent participation group
North Bristol NHS Trust
Summary
NHS England has made a commitment to ensuring that public, patient and carer voices are
at the centre of healthcare services, from planning to delivery stages (NHS England, 2013).
North Bristol NHS Trust Community Children’s Health Partnership (CCHP) echoes this
commitment through it’s partnership with Barnardos, a charity with a specific role to
promote participation across all areas of the partnership. Feedback from staff from within
the Trust however, suggests that although staff are committed to participation in theory, in
practice it is hard to find the time to implement and integrate ideas of participation.
Our parent participation group began life four years ago as a small group of parents
advising on the layout of a leaflet. The growing success and impact of the group has been
recently recognised when we won the ‘NHS Leader of Patient Inclusivity’ category at the
South West Regional NHS Leadership recognition awards. This case study summarises
our ideas about what makes a parent participation group work well.
Who we are
We are a parent participation group linked with a community mental health team for
children and young people with learning disabilities. At any one time our group is made up
of parents of children and young people with learning disabilities, a practitioner from
Barnardo’s and practitioners from the community child mental health team. We also partner
with children and young people with learning disabilities for specific projects.
Our aims
We were set up four years ago with the aim of asking parents to advise on the creation of a
user friendly leaflet about the service. Since then we have grown and developed and are
now viewed as an integral part of the service, which advises the team on all new
developments, and provides training on participation throughout the community children’s
health partnership and within conferences and training courses.
What helps parent participation groups work well?
We held a focus group to discuss what we learnt about what worked and didn’t work in
setting up our group. This resulted in the creation of guidelines entitled ‘Everybody brings
something to the table: Eight steps for setting up a parent participation group’.
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Peter Rilett
Chairman
A University of Bristol Teaching Trust
A University of the West of England Teaching Trust
Andrea Young
Chief Executive
1. Everybody bring food and share it
Bringing and sharing food allows people to make a contribution and feel valued and creates
a sense of community.
2. Use clear tasks with tangible outcomes
Clear tasks create a focus for the group and, as each task is completed, a sense of
achievement.
3. Think big, start small
Have faith that what the group says is important and will have an impact on much wider
systems, but start with a small manageable task, such as creating or changing a service
leaflet, in order to gain confidence and momentum.
4. Mix informal style with formal purpose
Be warm, be enthusiastic, have fun, whilst taking views seriously and acting on them.
5. Share experiences and translate them into action
People coming to the group have often experienced services as a place where they come
for advice on problems, but this is not the purpose of the group. Listen to both positive and
negative experiences and then use them to influence service development.
6. Give positive feedback
Let the group hear how what they say has impacted positively on the service and regularly
express appreciation.
7. Be flexible and think laterally
Be stoical about what can and can’t be achieved then take a ‘can do’ attitude and try
something different!
8. Let it grow organically
Don’t force a framework onto people. Use facilitators who want to be part of the group, take
note of what fires people’s imaginations and work with motivation.
The difference our group has made
To date our group has influenced a service leaflet for parents and one for children and
young people, our initial appointment letter, our compliment slip, our consent form,
feedback forms, our website, our accreditation as a ‘Young people friendly service’
(Department of Health, 2011) and all interviews of new staff members since the group
convened. The group also provides participation training to community staff and students
from across the region and presents at conferences.
In addition, feedback from the group about the structure and content of care pathways has
led to a shift in strategic thinking about collecting and disseminating information about
patients’ pathways through services. Interviews with service users are now used to portray
‘alternative care pathways’ in narrative form and to provide feedback to services about how
they might develop and improve.
Where next?
The parent participation group is a fundamental part of the service and has an influence,
both in terms of service development, and also more generally as clinicians ask
themselves, ‘what would the parents and young people say about that?’. In recent months
a similar group has been set up for children and young people with learning disabilities and
already this is informing and influencing the work of the service. Young people, parents and
staff continue to work together to develop and improve in order to keep learning disabled
children at the centre of our thinking.
Contact details
Jennifer McElwee
Julie Bugler
Andy James
Jennifer.mcelwee@nbt.nhs.uk
Julie.bugler@nbt.nhs.uk
andy.james@nbt.nhs.uk