Friday, 2 December 2011

Carers Rights Day, Friday 2nd December 2011....

Somewhat ironically, the word Celebration appeared in all the publicity to attract the attention of carers living in Rhondda Cynon Taff to Carers Rights Day.

It read 'Carers Rights Day Celebration Friday 2nd December 2011'

The agenda for the day was what you would expect. Tea, coffee and biscuits, an update on the progress of the Carers Strategy which appears to be going well, then some consultation from the department that buys in services.. they got a rough ride.

A break for tea, coffee and more biscuits followed by the big issue.. the Welfare Right Presentation, well I don't have to go into detail here, we all know what is being planned by this current disgraceful government, well I thought we all knew, but surprisingly there were some who did not know how welfare reform Tory style is going to effect them. Wales is historically 'left-wing' (a term which I notice our 'leader' is trying to turn into an insult!) full of tight communities all looking out for one another, with very long memories. Margaret Thatcher and the Thames Valley police remain high on the unforgiven list. But even in the most left-wing of communities there are those who are not politicised and go along with whatever the gutter press wants to peddle as truth. Of the 70 or more people that were in the room today which included council and social services staff as well as carers, my guess would be that half of them would happily say they were left-wing, I noticed that the four sitting councillors, three retired councillors, one AM and one MP that that were among us were all Labour. There was also a small group who always have something to say about welfare and benefits and who gets them and who shouldn't get them and usually quote the Daily Mail as the source of their extensive knowledge.

I was a little surprised when part way through the presentation of the realities of what was about to happen to our Welfare State, I noticed a couple from that group, probably in their 50's looking at each other with undisguised shock on their faces. She told me later over lunch that she had not considered herself subject to any of the changes which are soon to happen and was finding the reality of their situation truly frightening. Suddenly this nice couple with nice middle class sensibilities, who have worked hard all their lives until a disability meant they had to rearrange their lives and make use of the welfare state they had been complaining about paying into for so long, are going to be subject to the same disregard as the 'ne'er do wells' they assumed the cuts were being aimed at. We didn't hear much from that group after the Welfare Rights presentation, several of them were visibly shocked by what they had heard which has left me wondering how many more people are there out there with no idea of what is going to happen come next April if we don't all jump up and down and make a stink about the nonsense which this arrogant and ignorant government is hell bent on perusing.

So, I hope that 'Celebrations' of Carers Rights Day were held everywhere today and were as well attended as the one I was at in the splendid Rhondda Heritage Park Hotel in Trehafod. It is all to easy to become complacent and think that swingeing cuts in benefits will somehow not affect you, but they will and lives will be lost. As we went through the changes and implications facing us a fellow carer I was sitting with was close to tears at the prospect of having to allow his wife to undergo reassessments and the possible loss of much needed benefits by failing to score enough points on a somewhat skewed points system aimed at proving eligibility for work. Yes, times are hard, but penalising the poorest and weakest is not a civilized way of dealing with financial problems created by the richest and strongest.  

Friday, 29 July 2011

Everything Was Going So Well......

If you have visited here before you might remember that our autistic daughter Sarah, is apt to be a little volatile when faced with routine changes. When those routine changes involve transport to and from the day centre that volatility is apt to become something a touch more volcanic.  As of a Tuesday last week the bus has been arriving an hour late by Sarah standards. A chance meeting with a member of staff from the day centre while we were in Asda the following evening shed some light on the bus problem, and please don't ask what we were doing in Asda on a Wednesday evening, it happens almost every week and deserves a post all to itself which may or may not materialise depending on the mood I'm in.

Apparently some pen pusher behind some desk somewhere has decided there cannot possibly be staff taking buses out from the day centre as early as 7:30am  and the new proclamation has been made saying 'Thou shalt not drive the minibus out of the gates of the day centre before 8:45am and if thou doest the wrath of god will fall upon thee followed by weeping, wailing, rending of garments and gnashing of teeth'

A little background information is probably required.. the annually contracted transport supplied by Rhondda Cynon Taff to take service users to and from the day centres across the area started well last September, new contractors seen by most as pretty good compared to the previous bunch of cowboys, bearing in mind the council always chooses the cheapest contract. Sadly the good start quickly degenerated into the usual erratic timing, bizarre routes and untrained escorts with little or no idea of what was expected of them. Several of the service users found all this more than a little upsetting and the day centre decided that they may as well use their own mini buses for those clients most affected by the contractors inconsistencies.

Because of the sheer size of the catchment area for the day centre, never mind the terrain and the remoteness of some communities, this means an early start to get everyone in by 9:00am. Nobody had a problem with this, staff hours adjusted accordingly and from my point of view things could not have been better. Round about 8:00am the bus would arrive and Sarah would be ready and waiting because she was going with people who she likes and trusts and who understand her need for routine and no surprises.

Everything was going so well and then this twerp sitting behind his desk on the other side of the mountain who has probably never visited the upper reaches of the Cynon Valley pokes his nose in and now we are in turmoil again. With no warning or time for preparation things have got to change, so not surprisingly Sarah's volatile volcanicity has gone ballistic. We have had a week and a half of weeping and wailing, only one garment got 'rended' but gnashing of the teeth has been evident accompanied by ear splitting screams and flying fists.. so far only one fist has landed, my deflection skills are well honed.  Nothing has been broken yet, which is pretty good going but the poor old dog is keeping a very low profile and has taken to slinking around corners very gingerly and hurrying across open spaces with ears and tail very low. Husband behaving in a similar way to dog, although his verbal skills are a great help. He can make Sarah laugh which gives us a few minutes to regroup ready for the next onslaught when she forgets what she is laughing about and gets back to the business of making her discomfort over the transport known to anybody within hearing distance.

We all know times are hard and services are being cut back, but this particular proclamation is not going to make any difference to the social services finances, all it is doing is causing disruption to staff, service users and carers alike by messing up schedules and time tables and confusing the hell out of anyone on or near the autistic spectrum. As this change coincides with the schools breaking up for the summer holiday that is the excuse I am using as reason the for the disruption which gives us six weeks grace in which time she will hopefully be used to a new routine.

It does effect the finances of a carer that I am aware of though. She lives alone with her daughter who has CP, is wheelchair bound and without speech. This lady has a job which starts at 9:00am, when her daughter was picked up 8:15am this was fine, plenty of time to catch a bus to work . Now her daughter is being picked up at 9:15am which means she cannot get to work much before 10:00am. She loses an hour in the morning and it looks as if her chances of keeping the job are further threatened by the uncertainty of the return home times. Didn't mention the change in coming home times did I, well Sarah used to get home at about 4:00pm, now it can be as early as 2:00pm but averaging at about 3:00pm. The proclamation also stated that buses must be back inside the day centre gates by 4:45pm.  This irritating little pen pusher has just increased my caring hours by eight hours a week, and has made it extremely difficult for another carer to carry on working.

I wonder how he would feel if a bigger pen pusher told him he'd had eight hours cut from his working week starting now with no consultation, after all, that is a whole days wage. Financially it makes no difference to me, I get the £55.55 a week carers allowance for the approximately 144 hours of care I now deliver per week to my daughter, with our income support duly reduced by that amount per week to make sure we don't creep to far above the poverty line.. I know my place.

The most important point I am struggling to make here is that these changes were made with no warning, no consultation and apparently no good reason.  Things have calmed down in our house now, but we have had at least ten days of upset and upheaval which could have been avoided if we had been given a decent amount of time to prepare Sarah for the imminent change and I'm sure that goes for other carers too, we have to make alternative arrangement for care if we cannot be in the right place at the right time, we need to know in advance if times are changing. The same goes for the staff at the day centre who are having to deal with multiple service users all in a state over routine changes and the uncertainties that go with it.  Most importantly the service users themselves have enough challenges in a day without having to worry about who will be on the bus, what time the bus will leave or arrive and who will be there to meet them, sudden changes may not bother your average administrator. but they have a profound effect on your average service user and that just isn't fair.  Awareness of the consequences of changes when you are dealing with service users must be paramount in the minds of administrators within social services, surely?

Thats it, rant over until the next time, 2:00pm is fast approaching and you can bet your life if I'm not prepared Sarah'll be home expecting everything to be in order and I still haven't located the album artwork for Amy Winehouse's (RIP) album 'Back to Black' which seems to have gone missing while I was uploading it to Sarah's iTunes and shuffle over the weekend. Everything has to be in order for her in iTunes and every track must have it's artwork, and if it doesn't there will be weeping and wailing, a rending of garments and a gnashing of teeth and I don't feel like dealing with that today....

Monday, 13 June 2011

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.........

Wednesday, 1 June 2011

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.

Thursday, 14 April 2011

A Little Ramble Around An Abstract Concept...(or coming to terms with the inevitable)...

Last month, in March, I had a birthday. It was one of those 'significant' birthdays with a 0 at the end of it. Wow, the tyranny of numbers. An abstract concept used to measure the passing of time which is also, arguably, an abstract concept. We hang a lot of importance on the 0's and the 5's and of course to be contrary and human, we have disregarded 20 and made a mega fuss over 21, only now we've shifted that celebration 3 years earlier and 18 is the liberating number.

I recall in the dim distant past, my own 21st, well no, to be more accurate, I don't recall it at all, It kind of past me by. I had been traveling and had arrived back in London to find a small package from my mother which contained a 21st birthday card with profound apologies for forgetting such an important event but they (her and my dad) had been away for a 'spring break' and had forgotten all about it. Taped to the inside of the card was a little silver St. Christopher pendant on a silver chain and wrapped in tissue paper. The irony of receiving the St Christopher after what was to be the last bit of extensive travel I would be doing for a very long time was not lost on me, then or now!

That was in 1972, and what a grim year it was Edward Heath was Prime Minister, the miners were on strike and there was a State of Emergency  declared. We had Bloody Sunday in Derry. Watergate was getting underway in Washington and there was the massacre at the olympics in Munich. In fact, terrorism was taking hold all round, with hijacking and bomb scares, real and imagined, being reported everyday. It was a pretty bad year for earthquakes too... you can see where I'm going can't you? 

Yes, 39 years later we're having a pretty grim year again, but what goes around comes around, things will improve eventually, governments change... but that is not the subject in hand today, back to the numbers... Thus far I've been manageing to keep the exact total of my years to myself. Not an easy thing to do with a calendar obsessed autistic daughter, she has been reminding me and anyone else within earshot about it since Christmas.  My mother in law saw fit to send me a rather gaudy card with a large 60 emblazoned on it in red and gold, I've often questioned her taste over the years. The other daughter, bless her, chose to send me a bunch of sunflowers and an invite to go up to London and visit soon, just me, so we can hit the galleries and museums. Absolutely no mention of birthdays or numbers.

A couple of years ago I got a letter from the Department of Work and Pensions telling me I would not be able to claim my retirement pension until I am 62. I was expecting that, no big surprise, in fact, it is to be expected that the goal posts get moved just as I'm within shooting distance, it's been that way for the last 25 years! Anyway, I'm a carer, I'm not sure retirement is an option. So here I am trying desperately to ignore the number and what I perceive as the stigma which goes with now being an 'over 60' woman. There is an assumption that all I could possibly be interested in is Bingo and soap operas. Well let me tell you, I barely watch the TV at all and I've never played bingo in my life!  I admit to look at me now you wouldn't imagine that more than 40 years ago I had hit and survived the hippie trail to Katmandu, been chased by a police horse in Grosvenor Square and taken a lot more risks than I should have. I'm not sure I believed I would reach the age of 21. But I did, and I started my first business that year. Small but profitable. But I digress, I am really talking about admitting to being 60.

Oh, but that is not so easy, in my head I'm still at the Isle of Wight festival in 1969, that was the year Bob Dylan and the Band played there, the weather was beautiful and I fell in love, not with the right person of course, but that didn't really matter. A year later I was in love with someone else sitting in the pouring rain on a golf course watching Jimi Hendrix play his last gig at the 1970 Isle of Wight Festival. None of that is relevant, it's just a bunch of memories, but memories are all bound up with experience, and these are what our minds are made of. I suppose what I am trying to say is, just as physically you are what you eat, mentally you are what you remember, what you have experienced.

So how do I come to terms with this horrific number? Well I'm going back to where I started. An abstract concept for measuring time, they are just numbers and if I choose to I can ignore them. We all know you can't turn back time and we are all moving into the unknown, the future is a mystery, we can only guess but we can't really know what is going to happen next. To help us move forward into the unknown we rely on experience and memory, it's why we fall in love with the wrong people and do reckless and dangerous things when we are young, you live and learn.  Well that's the theory, and we all know that theory and practice don't always go hand in hand. For example,  by now I should be making less mistakes!

Acceptance looks like the only way forward, damn it! So look for the advantages.. need to find the spectacles first... right... still drawing a blank. Here's one, nobody is going to expect me to be keeping up with fashion, so I can wear what I like, within reason. Oh and here is the best one, the over 60s bus pass. Free rides to Asda, and if I feel like getting on the bus at the bottom of the hill just to get to the top of the hill, the driver can't complain that he doesn't have a fare for only going 2 stops! Priceless....