87. Evidence submitted by the Royal College
of Paediatrics and Child Health (PPI 19)
1. The main objects of the College are to
advance the art and science of paediatrics, improve standards
of medical care to children, and to educate and examine doctors
in paediatrics. Additionally, the College has a function in providing
information to the public on the health care of children.
2. The Royal College of Paediatrics and
Child Health welcomes the opportunity to provide evidence for
the above consultation. The College's response was developed with
input from Mrs Sally Carroll, Chair of the College Patients' and
Carers' Advisory Group, and members of the PCAG.
3. The College welcomes this parliamentary
review of patient and public involvement and consultation by the
NHS in England. There are a number of important points that we
feel the Committee should consider in its deliberations.
4. The College is concerned that the most
organised and articulate groups representing the interests of
patients with a specific condition can be influential on health
policy and service provision to a degree disproportionate to the
numbers they represent which can actually risk increasing health
inequalities and relative neglect of groups of patients in great
need of increased resources for their care. We would ask the Committee
to consider practical ways to address this problem of inequality
to ensure equitable attention is paid to the range of needs suffered
by children and young people with different health conditions.
5. The College feels young people have a
right to have a voice separate from that of adults and structures
must be put in place to ensure this. Therefore, we suggest that
young people's focus groups, special young people's committees
or other appropriate groups should be set up and resourced to
act as the PPI representatives for children and young people.
In Scotland the Children's Commissioner has set up just such a
group although it is still in its infancy.
6. The College is also aware that some service
users feel that the current Patient Advice and Liaison Services
(PALS) provided to them can be more concerned to give information
and support than to work to change and improve services.
7. The College also wishes to bring to the
Committee's notice that there is an extensive literature on how
children, young people and parents are frequently consulted but
that little or no use is made of their responses and we would
ask the Committee to ensure that at least as much time and funding
is invested in implementing the findings from consultations as
in conducting the consultations. We feel that those undertaking
PPI should commission reviews of the research about service users'
(in our case children and young people's) views and how they can
voice their needs.
8. The Committee should also be aware of
the increased dependence of many patients' groups, as well as
health professional organisations, on pharmaceutical companies
for resources with the potential for consequent influence on the
public statements and agendas of these groups and we feel that
this is an area that should be scrutinised in the future.
9. This College is aware that the charity
Contact a Family, with which this College works closely, is also
to submit evidence to the Committee and we wish to specifically
endorse the following points that are made in the Contact a Family
submission.
10. The College wishes to point out the
position of parents of children with long term disabling medical
conditions and that it is these parents, who are regular health
service users, who 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. Moreover, the College would add that there
needs to be appropriate mechanisms for ensuring the voices of
children and young people with long term medical conditions are
heard.
11. It is not possible for one small group
of individuals to be able to represent all the different groups
who use health services. 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 with similar health problems but be less
interested in committing personal time to improving services for
another section of the community yet clearly Local Involvement
Networks (LINks) need to be able to consider all aspects of local
community health services. The members of LINks 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. LINks should have the flexibility to co-opt individuals
to work on particular projects. Voluntary organisations and community
groups are often aware of what difficulties their members have
in accessing services. They can also provide a mechanism through
which service users can feedback their experiences of services
anonymously.
12. Provision of training is required to
ensure commissioners, members of LINks, and local community groups
understand how to make participation work effectively.
13. The College also wishes to present as
evidence to the Committee the response produced by this College
to the recent Department of Health consultation document A Stronger
Local Voice: A Framework for Creating a Stronger Local Voice in
the Development of Health and Social Care Services. This two page
document is included with this submission to the Health Select
Committee.[58]
Dr Hilary Cass
Registrar, Royal College of Paediatrics and Child
Health
9 January 2007
58 Not printed here. Back
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