On this page we list some of the research which is relevant to our families. 

The need for local, co-ordinated support and information: 

“[what families need is] one source of information…on all the issues about which a parent may have concerns … recommended by a range of health professionals, and handed to all parents who come into their contact with a problem of any type…in order to ensure that ...they know where to turn”.

“It should be made clear that even if a child does not have a definitive diagnosis…some provision must be made within the system for this group of parents, who currently struggle to gain the help they need.”

This study from 2010[1] found that 74% of families felt that they had received inadequate information from their local authority, and 62-64% said the same about their GP/hospital. Other parents and charities were reported as the best sources of information. These findings have hardly changed since a similar study in 2001.

More recently, in a 2017 study of young disabled people moving from childhood to adult life[2], a parent observed:

“Local information and guidance for parents could be improved – and someone to talk through what different services do… and help with planning or networking... it is not sufficient to be given a leaflet or a website. Ideally we need someone who could be alongside in crucial stages and knows our family”

Signpost is parent-led, and operates exactly as described above. We want all families to have, as one parent said:

“an ordinary life, where the disability doesn’t get in the way of what we want to do, with the same choices and chances as anybody else”

[1] ‘In the Dark’, Cerebra, 2010

[2] ‘Experiences of Transitions to Adult Years', Health and Social Care Alliance, 2017