19. Evidence submitted by Contact a Family
(PPI 8)
1. SUMMARY
1.1 It is impossible for one small group
of individuals to be able to represent all the different groups
of service users. In our view local LINk groups could facilitate
a process whereby commissioners and providers are made aware of
patients' experiences of local health services, appropriate action
agreed and resulting outcomes fed back to the local community.
1.2 Voluntary organisations and community
groups are often aware of the difficulties their members have
in accessing services and can assist in facilitating this. Individuals
from these organisations could be co-opted onto the LINk to work
on specific projects.
1.3 Commissioners, members of LINk and local
community groups need to know how to make participation work effectively.
If patient/carer participation is carried out poorly and not seen
as being effective, people will not wish to get involved. By contrast
where patient participation is seen to work well and influence
the way services are delivered people will be motivated to continue
to be involved.
2. CONTACT A
FAMILY
2.1 Contact a Family is the only UK wide
voluntary organisation supporting all families of disabled children,
regardless of the child's medical condition. As an organisation
we are committed to empowering parents and helping them to become
involved in shaping the services that their disabled children
need. We recognise that in order to develop better health services
it is necessary to get feedback from people receiving services
as to what their needs are and how well they are being met.
2.2 Contact a Family has a great deal of
experience of consulting with families of disabled children and
have developed various information resources on the topic including
a Parent Participation: professionals' guide, which covers the
key principles involved in successful participation. (Parent Participation—improving
services for disabled children: Professionals' guide (2004) published
by Contact a Family and Council for Disabled children).
2.3 Contact a Family is currently engaged
in a three year project with the Royal College of Paediatrics
and Child Health—"The Parents and Paediatricians Together
Project". The project's essential concept is to create effective
partnerships between the parents of disabled children across the
UK and the paediatricians and other paediatric health care staff
who work with them. The project has two main aims—to ensure
that every parent across the UK whose child is born or diagnosed
with a disability or rare disorder is automatically put in touch,
through their paediatrician, with Contact a Family and to open
up new opportunities for parents of disabled children to influence
paediatric and child health services across the UK, by creating
new frameworks for cooperation between parents and paediatricians.
The author of this submission, Sheila Davies, is currently the
England lead for this project.
3. KEY ELEMENTS
TO PARTICIPATION
3.1 To understand how services are delivered
and identify shortfalls in services it is necessary to seek feedback
from a range of patients, including different groups of service
users such as older people, children and adolescents who all have
their own specific needs. They can receive services for both acute
and long term conditions in a variety of settings, including the
home, GP, community centres and hospital. There are particular
obstacles for certain groups such as disabled people, asylum seekers,
and looked after children and extra resources may be needed to
hear their views. Parents of children with long term medical conditions,
including those with complex health needs, are another such group.
Their children often receive care from more than one health professional,
who can be working in different settings and their care can requires
coordination across different agencies. However parents of children
with long term disabling medical conditions are least likely to
have time to get involved with ongoing participation as much of
their time is taken up in caring for their child.
3.2 It is impossible for one small group
of individuals to be able to represent all these different groups.
Patients who want to get involved with participation are often
motivated to do so as a result of their own personal experiences.
For example, the parents of a disabled child might be motivated
to get involved to improve services for other disabled children
but be less interested in committing personal time to improving
services for another section of the community. Yet quite clearly
LINk needs to be able to consider all aspects of local community
health services.
3.3 The members of LINk should therefore
not try to represent all patients views, but facilitate a process
whereby patients' experiences are fed back to the appropriate
strategic committees and where necessary action taken to address
problems. LINk should have the flexibility to co-opt individuals
to work on particular projects. Voluntary organisations and community
groups are often aware of any difficulties that their members
have in accessing services. They can also provide a mechanism
through which service users can feedback their experiences of
services anonymously.
3.4 Though Patient Advice and Liaison Services
(PALS) provide such a service, we are aware that many parents
are reluctant to feedback negative experiences through this channel.
Parents are often grateful for much of the help received and do
not want to appear to be complaining about aspects of care that
did not work well. Parents also often tell us they are worried
that talking to PALS is seen as complaining and might have a negative
impact on the way they and their child are treated when returning
for future treatment. PALS could address this by being more proactive
in seeking suggestions to improve services, carrying out a sample
of patient interviews in different settings, as well as providing
other mechanisms such as suggestion boxes to enable anonymous
feedback about services. However, local groups also provide an
easily accessible source of a particular patient group whose needs
might not be picked up through other channels.
3.5 Contact a Family provides details of
various national condition support groups through their directory.
Many of these have local or regional groups who could provide
contact with local families affected by long term conditions.
3.6 Very often within the NHS consultations
are carried out when services are being closed, rather than to
find out how services could be improved. Parents sometimes report
that their views are being sought and then ignored. If patient
participation is carried out poorly and is not seen as being effective
then members of the public will not be motivated to get involved.
3.7 Health professionals are sometimes too
busy to make time to seek patients' views. They may also be reluctant,
due to concerns that their patients will ask for services they
cannot afford. Yet our experience of parent participation shows
that solutions can often be found to problems through better understanding
of individuals' needs, without necessarily requiring needing extra
funding. (Parent participation - improving services for disabled
children in health settings, 2005, published by Contact a Family).
3.8 Where patient participation is seen
to work well in influencing how services are delivered, patients
and carers are motivated to continue getting involved. Training
is required to ensure Commissioners, members of LINk and local
community groups understand how to make participation work effectively.
4. RECOMMENDATIONS
4.1 The LINks should:
— Build up contacts with local community
organisations, and find out from them their concerns over health
service provision.
— Understand the variety of approaches
available to consult with patients and carers and what is required
for participation to work effectively.
— Co opt individuals from the local
community to work with them for specific projects which might
be time limited.
— Provide practical support, including
financial help, to assist groups in consulting with members and
support patient representatives from these groups to report back
their findings to commissioners and providers.
— Provide practical support so that
parents, carers and patients are able to participate in this work.
— Identify suitably qualified individuals
who can assist when consulting with young children who require
a particular expertise.
— Ensure that all patient groups needs
are being considered, including hard to reach groups.
— Report to the overview and scrutiny
committees on how the process is working
— Publicise to the local community
how patients views have influenced the way services are delivered,
to motivate members of the public to continue participating.
See attached page for diagram representing our
vision for LINk.
Contact a Family
January 2007
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