Partnership working
Contact a Family has and continues to work with many organisations and government departments such as the Royal College of Paediatrics and Child Health (RCPCH), the Royal College of Nursing (RCN), the British Academy of Childhood Disability, the Scottish Executive and the Welsh Assembly, the Social Policy Research Unit in York and voluntary agencies such as the Family Fund.
Linking up parents and professionals
The Parents & Paediatricians Together Project was a joint initiative with the Royal College of Paediatrics & Child Health and funded by the Big Lottery.
The project’s main aim was to improve the experiences of parents whose child is born or diagnosed with a disability or rare disorder through enabling them to access greater support and by providing opportunities for parents to influence paediatric and child health services across the UK.
Early on in the project, a literary review of the evidence base on the role of information and parent groups in supporting families was carried out and a paper published in the Archive of Disease in Childhood in 2005.
Many paediatricians were concerned that families were being misled by poor quality information on the internet, so we developed an internet leaflet to provide advice and guidance to families on this. Paediatricians also told us they wanted written information to give to families to help them manage their child’s sleeping, feeding/eating and behaviour. We developed these working with both parents as well as professionals who had a particular expertise in these areas.
Parents told us they often struggled to understand the roles of the different child health professionals in supporting a child’s development, so a leaflet was published called ‘Concerned about your Child’ to help explain this.
At the end of the project we produced the 'Self Care leaflet, to support health professionals in providing information to families. The research that informed this leaflet is to be included in the training curriculum of future paediatricians'.
Helping professional get parents views
Contact a Family has assisted professionals at a local level, by running consultations to collect parents’ views on services as well as supporting the development of parent forums.
For example:
- Patient safety agency consultation
- Welsh Assembly consultation on hospital car parks
- Tower Hamlets consultation about new ASD pathway
- Sutton – starting up a parent forum
- East Cornwall - designer children’s centre
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