It's Carers Week. I'd Better Say Something About It....

Carers Week 13th – 19th June 2011

Carers week already, it crept up on me this year. I know I've been seeing references to it all over the place but after a year of being vilified in the press about being a 'benefit scrounger' it is easy to forget the positives. So today I finally got my head around it, made a few phone calls and got my week organised.

A sort of bonus for this week is that Sarah has a few days in respite so I don't need to be home to meet and greet in the afternoon or worry about the damage the husband and daughter 'home alone' combo might do to the house and any trauma inflicted on the dog in my absence.

So tomorrow sees the start of a week of "activities for carers living in  Rhondda Cynon Taff designed to give a mixture of opportunities for you to access information and advice, to learn from other carers experiences and to have a little fun!" And the first event is.....

'Trouble Shooting drop-in session. Access support, information and advice about wills, benefits, debt, and getting back to work with support.'

Very nice, much needed I'm sure, but I'm having a 'week off', better known as respite, and since all the above has a tendency to depress me I'm steering clear of that lot, and anyway, I got a better offer for lunch from the Older Carers Support Worker. I turned 60 this year, I'm officially older, I got a bus pass! No pension yet but they moved the goal posts on that one. Never been one to refuse a free lunch so that's Tuesday sorted out.

There's nothing doing on Wednesday, so I suspect that will be the day I have to go to Aberdare and Asda and pull some weeds out of the garden. Thursday could be interesting.....

'Carers Celebration and Information event in Hawthorn Leisure Centre - bring your gym kit! A chance to find out about support available for carers locally and your opportunity to join the Carers Strategy Implementation Group meeting, join in a taster adult education session or a relaxation class, have a manicure and join us for a buffet lunch.'

Bring your Gym kit!?!?!? I think not. Observing and commenting on the Carers Strategy Implementation group meeting seems much more appealing and most probably pain free. Apparently there will be floral arrangement and relaxation classes available too. I opted for floral arrangement a couple of years ago, the relaxation class followed by a session with a hypnotherapist after the floral disarray were a godsend. Hopefully the Strategy meeting will take us right up to lunch and I can avoid getting involved with the 'gym inductions' and the 'free taster Zumba Gold (designed for the over 50's)' and be home in time for tea. Friday is the most interesting day for me, I'm involved with this already so really I should be there.....

'Carers Sharing Session. Find out how you can be a part of recruiting and training the next generation of social workers, nurses and social care staff. Come and hear other carers stories and meet the staff you may be working with over lunch.'

These sessions are great. They are a mixture of carers, service users and staff who provide an overview of their experiences of involvement and the benefits they have gained or seen, followed by a chance for others to get involved. In my experience much is gained on both sides, service providers are often unaware of problems carers and service users may have beyond the direct professional involvement, carers and service users don't always understand the problems within social services, and of course carers and service users don't always agree! These get togethers are always eye openers on all sides and the knowledge gained is invaluable.  Which brings us to Saturday.....

'Carers Day Out! An action packed activity day for carers and cared for in Dare Valley Country Park. Try out Canoeing, have a guided walk or learn some circus skills - suitable for carers and cared for of all ages and abilities.'

Now I submitted myself to this torture last year, the 'gentle warm up' almost killed me, and if you think I'm going to break the habit of a life time, which is the avoidance of canoes under all circumstances, you've got another think coming! I already know how to juggle and how to spin plates, both activities quite pointless and a bit boring after a while. The only other circus skills I can think of are unicycling, stilt walking, tightrope walking and the flying trapeze so I think the wisest move would be total avoidance of the beautiful Dare Valley Country Park on Saturday.  A little bit of gardening if the weather allows seems quite appealing.

So that's my carers week sorted out, three lunches and plenty of opportunities to put the world to rights, see a few old faces, catch up with the gossip, share some moans about the ConDem government and their cuts, then share some more moans about all the stuff that's gone wrong with social services or day care or health or the council or best of all, the new neighbours weird behavior or that obnoxious child from up the road. You know the stuff I mean, the important stuff that is really none of your business but certain to take your mind off of caring and benefit cuts!

If you are a carer, have a good Carers Week, make the most of it and spread the word. If you're not a carer then think yourself lucky, spare us a thought and remember that becoming a carer can happen to anybody at any time and it is not something you choose to be it is something you have to be and believe me, you will get precious little thanks or recognition for it. Understanding and a little bit of give and take can go a long way towards making a carers life easier, we're just ordinary people who have to deal with and be responsible for someone else's life as well as our own for as long as it takes.

That's all, I could go on forever about the difficulties but that would be boring for me as well as you! I could also get all sentimental about the joy of giving and the sense of worth and achievement you get from caring, but to be honest, that goes against the grain and would be a load of sentimental twaddle anyway, so if you got this far, well done! Thanks for sticking with it to the end.........

It's All Over The News So I'd Better Talk About It....

That's right, Panorama on the BBC last night. I didn't watch it... I watched and read the comments and disbelief washing all over Twitter.  I suppose it's a reflection of the people I follow, but at one point 90% of the tweets I was seeing were something to do with care homes and care workers. Of course all were expressing shock and sorrow that such an appalling thing could be going on.

You won't be surprised to hear that I have a lot to say on the whole subject of care homes and care workers and in particular, how they care for people with autism and learning disabilities. Our daughter lives with us at home and we know how difficult she can be, but that goes without saying, when she is not staying at home she stays in a small respite house, one of half a dozen or so run and owned by the local authority which take a maximum of four clients at any one time for a few nights of respite care each month.

They are almost fully booked for the foreseeable future, and sometimes stays have to be cancelled because they have to use the respite beds for emergencies. Carers get sick too, particularly the elderly ones, and if they have to go into hospital or even worse, pass away, places have to be found quickly for the upset and confused sons or daughters in reasonably familiar and homely surroundings with people they know and trust. These are ordinary houses in ordinary streets and fortunately for us, our local authority uses this model when moving people who need constant care and attention out of the family home and into supported living. Ideally three compatible clients and of course care assistants or workers who are aware of the difficulties these people are facing and are trained and confident enough to deal with them. Now and again things go wrong, but on the whole it works and most people are happy with the way it works. The thought of any of the people I know living in these houses being placed in a hospital setting for care is absolutely awful.

Of course, I do not know all the details of the dreadful happenings in Bristol but the fact that it is being described as a 'private hospital' speaks volumes to me. I have no experience of private hospitals as such, but I do have a little experience of the privately run care homes for the elderly, my own mother was in one briefly here in Wales and my husbands grandmother was in one in London, and her daughter, my husbands aunt now in her late 90's is in one also in London. In all three cases, care was and is only just achieved and individual needs a nuisance to a mainly foreign staff with very little understanding of the English language, here I should say that some of them were and are angels in a very difficult place, albeit scrupulously clean and ordered and run with military precision! I won't bore you with the bedsores, broken leg, disappearing chocolates, disappearing shoes, disappearing teeth, dreadful food and so on and so on. It was and is the indifference that bothers me.

We all know that caring is an expensive business, £20,000 to £30,000 per annum for the elderly, give or take ten grand either way, finding a figure for the cost of care for a person with learning difficulties, a disability, autism or mental health problems is more difficult, but at the bare minimum it seems to be more than three times the cost for the elderly.

Pause for thought and a flight into fantasy... £100.000 per annum... I could pay off the mortgage, get the bathroom sorted out, do a few repairs around the place, even have a little holiday... all in one year!

Back to reality, you can see why the private care home for the elderly businesses expanded into the care for the disabled business! Sadly I don't think they realised that caring for the disabled is a completely different kettle of fish.  We have private care providers who are supposed to fill the gaps social services can't cater for.. they are a disaster, they send out domiciliary care workers to people who don't know them and are expecting to be taken out if only to walk around the shops and have a cup of tea. I won't bore you with the extended telephone debacle which took place between me and one such care provider over five days a couple of weeks ago which resulted in complaints being made and apologies being received and over a week of anxiety and upset for our daughter which spilled over as challenging behaviors at home and at the Day Centre. It was a very difficult couple of weeks which could have been avoided if the care provider had got its act together and delivered the correct training for their staff, and I mean all of their staff including managers and the poor girl in the office, who has yet to master the art of delivering bullshit down the telephone in a convincing manner!

When it comes to providing services of any sort to service users in their own home, in a shared supported living home, in a 'private hospital', in fact, wherever a person with learning difficulties, autism, CP, Downs, mental health problems or whatever spends most of their time, they and their families should be able to expect those services to be fit for purpose. Fully trained staff who treat their clients with the respect they deserve.

It is a sad reflection of our society that it takes a current affairs television programme to make the 'authorities' take notice,  I suppose we have to be thankful there wasn't something really interesting on another channel and enough people did watch and comment to make it front page news this morning. Eminent people, experts, professors, cabinet ministers and the like are being wheeled out to make comment and people have been arrested. For the first time in quite a long while now I'm able to say I do not sense the usual indifference.

Some of us have been aware of instances of bad practice taking place but have said or done nothing, not from indifference but from the knowledge that although a complaint will be listened to sympathetically and appear to have been addressed it will only have been brushed under the carpet, usually because dealing with the problem will cost money. Most annoyingly from the parent carer point of view, is the innate superiority that some (and thankfully fewer as time passes) care professionals display when you question aspects of what is happening with your son or daughter, they obviously haven't run across the excellent Expert Patient programme which is being made available to parent carers in many regions now!

At the very least, many more people will now be aware of instances of abuse and malpractice within social care, possibly even newly aware that there is such a thing as social care for the people some members of the press have been insulting with the label 'benefit scroungers' in recent months. Awareness is a good thing, we need more of it! So thank you to the brave whistle blower for persevering and thank you BBC for the broadcast. Now lets hope the government gives this more than just lip service and sees the danger of  privatisation and the lack of accountability inherent within it, especially when you are dealing with societies most vulnerable members, many of whom do not have a voice.