Man showing despair

Letter: Elderly parents of autistic man forced by cuts to give up caring for him. It’s heart-wrenching

We always welcome a Letter to the Editor to share with our readers – unsurprisingly they don’t always reflect the views of this publication. If you have something you’d like to share, get in touch and of course, your considered comments are welcome below. This from a carer on the Isle of Wight, who for obvious reasons, wishes to remain anonymous. Ed


We are the parents and carers of a man (our son) with severe autism and brain damage. We have been looking after him for 37 years and two of the army of 16,000 unpaid family carers on the Island.

We attend to his every need. We make sure he looks the business in terms of the clothes he needs and as far as possible we make sure he is fit and healthy. This is not easy as he doesn’t speak and therefore can’t say how he feels.

The care we provide
We take him to see the doctor when we consider it necessary and interpret on his behalf. We take him to have his eyes checked as far as possible. When he needs dental treatment he has to be fully sedated.

We have a personal budget and have been able to employ really excellent personal assistants.

We have to arrange all matters relating to the advertising of the job, the interviewing and selection of staff and all matters relating to employment law.

Why are we chucking it in?
So far so good – so why are we chucking it in?

The short answer is that we are now pushing 70 and its getting too hard.

There are no rules when it comes to personal budgets and the Council it seems view carers with a degree of contempt. At least it feels that way.

When an email is sent to senior councillors asking for clarification on decisions made regarding personal budgets and, for example, client contributions then no reply is forthcoming despite repeated reminders.

We are left with the conclusion that council responses (when available) is at best evasive and at worst lying by omission.

‘Closure’ of Westminster House
This seems to be born out by the recent decision to what amounts to the closure of Westminster House.

The services at Westminster House have evolved over time to meet the needs of users and carers. If we had wanted only weekend respite then that would have been provided. Westminster House has been there for us as a lifeline.

When we become ill they have been there for us. We don’t have holidays but some carers manage to get away because of the 24 hour care 52 weeks of the year. But they won’t for much longer.

The last straw
The “closure” of Westminster House is the last straw.

We cannot safely undertake the caring role without Westminster House to support us.

That’s why we are chucking it in and the irony is that the council will find it hugely more expensive to look after people in care because more carers will have to do as we are doing as the situation without Westminster House is simply untenable

Sent by “A Carer”

Image: lloydm under CC BY 2.0