Select Committee on Health Written Evidence

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

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