Friday, 30 November 2007

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.


Tilly said...

Hi, I just wanted to introduce myself having discovered Maz, the other day through her kind comments on a post I left on my blog TheDandelionClock. 100% agree with every comment you make, that carers are not made aware of the services that are available. Well said.

We have two grandmas to look after - both with dementia of different sorts, and two gorgeous children 9 and 11 who are the saving grace of all of us (though that makes me feel horribly guilty and that's a whole other deal!). But it's great to know that there are carers like you - & the feeling of not being so isolated, when we all fight the same old battles is fantastic. Hope to get time to read your blog regularly! Keep caring, keep smiling Tillyx

Mr Mans Wife said...

Hi Tilly, welcome to my blog and thank you for linking here too! I have added you to my links list also.

I agree that we all seem to fight the same old battles even though we care for people with different illnesses and different needs. It's great to talk to people who understand and we are never alone in the blogosphere :o)

Thanks for commenting.

lady thinker said...

Yes - and if we can all swallow our pride and register as carers (or in need of care) then the local authority can pursue the funding they need from central govt.

Mr Mans Wife said...

Good point, although I'm not quite sure how one goes about registering as a carer with social services or the council. In our case our details were passed on through the Community Mental Health Team. Now I just get sent a questionaire every now and again about services.

Dennis Morrod said...

In 1997, the Cornish 'Link' magazine published: ' How many carers are going to become prematurely ill and die before Cornwall Social Services gets its Stautory Act together. The following years, my severely disabled son's mother died suddenly, from too much anxiety, stress and sleep deprevation. She became a part of that statistic, carers dying, prematurely, she was just 54. What can you take from a young disabled man who has nothing - his mother. I cared for him for a further six years before he too died aged 31. In the 38 years since my son was born it is an idictment that carers are still struggling with government for the proper care that they themselves deserve...