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About us

Useful links

Related and useful links for families, professionals and researchers

In 2016 we published a paper for the journal Paediatrics and Child Health on resources for parents raising a disabled child in the UK that has been published online. The paper aims to inform UK paediatricians and child health care specialists about resources that can help to support and empower parent carers of disabled children so they can signpost families to them. PenCRU and some members of our Family Faculty have created a plain language summary of this paper which highlights the useful resources. Please click on the image below or this link to view this: Resources for parents raising a disabled child in the UK. 

 Resources paper PLS image

To find out more about medical conditions and treatments available

Contact a Family provide a directory of medical condition affecting children, with information on diagnosis and treatment, together with details of the related support networks and groups, where available. There is also a glossary of medical terms. www.cafamily.org.uk/medical-information/

NHS Choices is the online 'front door' to the NHS. It is the country's biggest health website and gives all the information you need to make choices about your health. www.nhs.uk/Conditions/Pages/hub.aspx?tab=Condition

Organisations that campaign for better services for disabled children

Every Disabled Child Matters (EDCM) is a campaign to get rights and justice for every disabled child. www.edcm.org.uk

Searching for evidence on the Internet

The Cochrane Library is a collection of databases that contain different types of high-quality, independent evidence to inform healthcare decision-making. The evidence has been appraised using strict methods, so the conclusions are the best available. www.thecochranelibrary.com

NHS Evidence provides free access to clinical and non-clinical information - local, regional, national and international. Information includes evidence, guidance and Government policy. www.evidence.nhs.uk

Trip Database is a searchable database of clinical evidence information www.tripdatabase.com

Tip: when using Google and other search engines to find out about treatments or therapies - adding "evidence" or "guideline" into the search with the name of the treatment or therapy will often help to find more authoritative & unbiased search results.

For further information on this topic, please click here.

Supporting public and patient involvement in research

INVOLVE is a national advisory group which supports greater public involvement in NHS, public health and social care research. INVOLVE is funded by the National Institute for Health Research www.invo.org.uk

Legal Issues

http://www.direct.gov.uk/en/DisabledPeople/index.htm: An excellent government site which gives information on all public rights and services. This section deals with all aspects of services and rights of disabled people with guides for parents and individuals, links to other sites and a lot of information to help you find what you need. This includes subjects such as education, transport, financial support etc.

https://www.cafamily.org.uk/advice-and-support/education-health-social-care/social-care/: This section on the 'Contact a Family website' deals with the support and services your child is entitled to, and https://www.cafamily.org.uk/advice-and-support/money-benefits-work-and-childcare/benefits-and-tax-credits/ covers advice around benefits, work and childcare.

Information services for local families




Parent Carers Voice