Select Committee on Health Written Evidence

19. Evidence submitted by Contact a Family (PPI 8)


  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.


  2.1  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.


  3.1  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.


  4.1  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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