Henrietta Spink: Huge numbers of disabled people and their carers would benefit from some sensible changes to care packages

Henrietta Spink is the founder of the Henry Spink Foundation and author of Henrietta’s Dream.

My husband Michael and I are the parents of two profoundly disabled boys, Henry (21) and Freddie (18). We are both totally passionate about the boys but the physical, financial and emotional challenge of caring for two such disabled children for the last 22 years has taken its toll. The cost to us as a couple and as individuals has been immense and the strain at times unbearable.

As described in my book, Henrietta’s Dream, we have battled for provision from special education, health and social services, but getting any help has been like pulling teeth.

These issues affect many people and involve large amounts of money: there are 770,000 disabled children in the UK. The 2001 Census suggests that there are 5.2 millions carers in England and Wales. Over £1.75 billion was spent on assessment and care management and £13.1 billion on adult social care by local authorities in 2007-8 across the UK.

As a result we have come up with a few simple cost effective and cost neutral ideas that we believe would deliver a fairer, better run and more humane service for both carers and disabled. We have engaged with politicians from all sides, and a recently-tabled Early Day Motion on these matters has quickly gathered support from across the Commons.