Moving on: the final transition. What happens when a carer can no longer care?

Healthwatch West Berkshire was asked to join the West Berkshire Learning Disability Partnership Board (LDPB) in finding out from parent/family carers of those with a son or daughter with a learning disability (LD) what their thoughts were on what would happen when they either couldn’t care anymore or if they died, and what they hoped would happen.  They spoke to 11 carers.

Nearly all the parent/family carers were over 60 and their dependents all over 19 years old with some in their 40s and 50s. The time for planning steps into ‘independent living’ with a pathway approach and support from the family has largely been missed. It also appears a new generation of families with younger dependents may equally risk missing out on a planned transition from care at home, to a more fulfilling and independent life with the appropriate care available.

It is clear that all parents share the same concern - that there is no long term plan for those they care for once they can no longer cope or pass away. With the Care Act 2014 making carers as important as those they care for, this lack of planning needs to be looked at urgently. An up to date assessment of the scale of the issue in West Berkshire should be made and a strategy written to clearly state how the Council will involve parent/family carers in a long-term plan of what will happen once they can no longer care. It is apparent that this will also need to involve a multi-disciplinary approach including Housing, GP’s, Social Housing Providers etc.

The report contains six recommendations.