Lack of Care

I met with my carer friend this week. We’ll call her Jill. Whenever we meet we always discuss some interesting carer issues and when I come home I am often still pondering these.

Her husband (we’ll call him Jack) has a host of life threatening conditions and is mostly confined to a wheelchair. Jill also has some serious health issues of her own. Still, between them they have started running a group for the cared for and their carers. There is a lesson in that itself, I feel; contrary to popular belief, although being in need of care 24 hours a day, Jack is an intelligent man with excellent leadership and organisation skills.

The newly founded group is an informal affair, held in a local pub. The purpose of the group is to give advice and support to those who are not receiving the help they are entitled to, of which there are many. Often Jack will meet someone at the day centre he attends, and is shocked to discover that their one day a week at the day centre is the only help that the person receives.

Consider one man who is completely paralysed on one side of his body. Anyone who has suffered from paralysis or knows someone who has will know that the loss of use results in the limbs becoming a “dead weight” – far too heavy for the man to manage his own personal needs. He lives with his elderly mother who, unbelievably, struggles alone to care for her grown son. He attends the day centre one day a week, and recently has also been granted a paid carer for half an hour a day – which is great as long as he doesn’t need the toilet for the rest of the day.

What I find most shocking about these cases is that they are obviously known to Social Services because they are receiving some care, but it is not nearly enough. I don’t think it is unreasonable to presume that there are probably many more who are not even known to Social Services.

The thing is, it’s not that services are not available, but that carers and the cared for are not made aware of those services or the fact that they are entitled to them, or how to apply for them. As mentioned before, carers often do not seek the help themselves as they do not recognise themselves as carers. Those that do are still kept in the dark.

In Jill’s case, it wasn’t until she almost suffered a nervous breakdown that, with the intervention of her doctor, they started receiving help in the form of day centres for Jack, and then learned about direct payments which enabled them to hire a carer.

It makes me wonder if the £57 billion a year that carers save the government is grossly underestimated.