Do any official bodies in the UK care very much about babies and young children who have very special needs?
Peter Limbrick writes: My work in the UK suggests to me that the whole subject of early child and family support (‘ECI’) when a baby or infant has disabilities is a neglected area. I meet very many committed practitioners and many parents who are active in service development. I do not meet executives or senior managers who are addressing the issues. I do not meet academics who are researching support systems. I do not meet interested politicians.
This is depressing. We had good practice in the early 2000s with government-backed ‘Early Support’. This was allowed to go into decline when the government changed and, strangely, when we had a new Prime Minister who was father to a disabled infant.
Before learning of the Report: Key Data on Early Childhood Education and Care (ECEC) in Europe, I wrote to NICE (National Institute for Health and Care Excellence - UK) with the simple question:
"Do you have NICE guidelines about care of babies and young children who have disabilities or about care for their parent?"
"NICE publishes a range of guidance including technology appraisals, which are recommendations on the use of new and existing medicines and treatments within the NHS, and clinical guidelines which are evidence-based recommendations on the care suitable for most people with a specific condition or need. We also produce interventional procedures guidance, which looks at the safety and efficacy of specific procedures and medical technologies guidance, which makes recommendations about whether the adoption of a new, innovative device or diagnostic is likely to deliver improvements in services.
"Topics for our work programmes are typically referred by the Department of Health and Social Care and NHS England. Our guidelines topics tend to health condition specific, although we do produce some guidelines for people with a specific need. We have not been asked to produce any specific guidance on the care and support of young carers, however we have published guidance relevant to children and young people, some of which applies to children and young people with disabilities (please click on the ‘published guidance on this topic’ to access the full list).
"To see if another organisation has published any guidance you can search NICE evidence services. This is a search facility hosted by NICE that enables users to search for high quality evidence on public health, social care and health topics. As an example here is a link to a search using the terms ‘guidance for young carers’ .
"To keep up to date with developments at NICE, including information about new topics you may wish to sign up to receive our newsletters and alerts. NICE news and the NICE in social care bulletin may be helpful.
"For your background you can read more about how we work with the public/patients/carers in the NICE and the public section of our website.
"I hope this is helpful. Do let us know if you have any further queries."