Rather unexpectedly, I felt that today might be a good day to reintroduce an occasional feature of this blog – the Saturday Riddle. Previous riddles have been tongue in cheek affairs but this one is deadly serious, prompted by one of the most upsetting news stories of the year:
The Riddle is:
Q: When is a care plan not a care plan?
A: When it’s a guideline.
Yesterday, on Radio Oxford, the formidable Phil Gayle interviewed Phil Aubrey Harris who is Southern Health’s director of social care. The interview focused on the inquest findings the day before into the death of Nico Reed, a young man who died in 2012 in one of Southern Health’s supported living services. Nico’s care plan stated that he needed 20 minute observations as several physical issues he had could put his life in danger. On the day of Nico’s death, there was one support worker attending to 4 severely disabled people and the records showed that there had been a gap of between 45 minutes to an hour between Nico’s observations. Mr Aubrey Harris repeatedly talked about “with hindsight” but Mr Gayle stuck to his guns and continually pointed out that hindsight wasn’t needed – the care plan was quite clear. It was at this point, that the Sloven man threw in the audacious idea that a “care plan is just a guide”.
A care plan is just a guide????????????
No it isn’t Mr Aubrey Harris. A care plan, done well, should be a very clear statement of the care someone needs. And when specific figures are quoted in a care plan, they are there for a reason. Someone has decided that an exact time needs to be given to the specific issue that the plan is addressing.
You might accuse Mr Aubrey Harris of wriggling. You might say that he is covering his organisation’s arse. I might say that he is perpetuating the abuse that led to Nico’s death. A company commissioned and paid an awful lot of money to provide care reveals once again that their reputation comes kilometres before the needs of their “customers” and the feelings of the people left bereaved.
Where does this “guidelines” bollocks end? Supposing you have been assessed as needing 24 hour care and that is subsequently written into your care plan. The commissioning service will pay the provider for providing 24 hour care. But in your world, this is just a guideline and you decide the person can be supported on 16 hours care per day. They are left alone for the other 8 hours. Too off the wall? For me, it’s the logical progression of providers deciding that an assessed care plan is open to flexibility.
I’m being kind. The statement from Mr Aubrey Harris has nothing to do with flexibility. It is about cutting costs by cutting corners. They put in a tender to win the contract and obviously set their profit margins too low (for their board). The tender was accepted and then someone must have nudged them and told them that the shareholders won’t be too chuffed to get such a poor reward. I suspect the viral quality team got together to decide how they could turn this problematic situation around. And inevitably, the end user carries the can.
I’m struggling to get my head around the implications of “guidelinegate”. In all the discussions about #LBBill, I’ve always assumed that, although the care providers make huge profits at the expense of our family members, they were at least providing the care they were commissioned to provide. Now that idea has gone of out of the window. Everything can change when in the hands of greedy providers and care plans aren’t worth the paper they’re written on.
The commissioners mustn’t get off lightly either. Do they just sign the contract, hand over the dosh and then retire into the night? Imagine I commission a window cleaner to do upstairs and downstairs of my house at £20 a time. The window cleaner sees this contract as just a guide, cuts costs by not having a ladder and just cleans the downstairs windows. I would see it as my job as his commissioner to whomp his backside and would probably cancel our contract on the spot.
Another galling aspect of all this is that if the boot was on the other foot, there is no way that families would be able to get away with providing such awful care and going against written care plans. When Steven was in the Unit, I’m not sure if he had a care plan – I certainly wasn’t part of drawing up one. He had umpteen “behaviour management plans” and a big part of the council’s case in court is that they didn’t believe I would follow these behaviour plans. I would have been castigated if I’d suggested that these meticulous positive behaviour plans were just a guideline. But then families are not part of the gang.
There is so much else about the coroner’s verdict that chills to the bone. Southern Health took an executive decision that Nico’s family would not be told the nature of his death for over a year. In fact, even then, they found out by accident – not through the candour or humanity of the provider.
It also sets off enormous alarm bells about the realities of supported living. So popular at the moment but so at risk of being abused by both the commissioners and the providers. A prime vehicle for the cost cutters and the profit trouserers.
There has been lots of twitter discussion about the radio interview and for most people, it is clear that Mr Aubrey Harris is first and foremost a businessman and showed very little understanding of what he was being asked about. We shouldn’t be surprised. Care is big business. It’s not about care. Nico was a cost unit. A unit that could be trimmed to allow lucrative bonus schemes and money to go towards self nominated awards.
This is Care 2014.
One of the aims of the #LBBill is to push the State to be more acknowledging, more respectful of the input of families & allies into the lives of disabled people, post 18. The current attitude of the State is pretty piss poor. The most common responses of the State towards families range from being totally ignored, humoured, to being met with suspicion or downright hostility.
This attitude doesnt make any sense to me. Surely all the evidence is that families become even more important post 18. Just supposing that on the person’s 18th birthday, every family announced that they were downing tools. The State would implode.
For people with autism, routine is so crucial and for the most part between the ages of 5 and 18, that routine is provided by the routine of school. When school ends, a whole new routine needs to be built and it is solely down to the family to facilitate and maintain the new routines. Nobody else can do it. And it becomes a lifetime’s job from 18 until the family carer is no longer around.
At 18, you get caught up in the lie that is “transition into adult services”. There are no services. There is no transition. But you become distracted by this imaginary process at a time when your energy needs to be focused elsewhere – helping your 18 year old build a new life. I remember Steven’s old social worker, Whistler’s Mother, giving me a wad of handouts of ” things Steven might like to get involved with”. Most of them had been photocopied so many times they were unreadable. Most related to children’s services. A handful related to events he could do once or twice a year. Out of 60 odd pages, there wasn’t one that could be used to build a new routine.
The reliance on families by the State is huge. I’ve written many times before that for personalisation to work, the expectation on the family’s input is massive. You become an employer. You have to run a payroll. You have to recruit staff. Nobody else will do it. If families didn’t do it, personalisation would collapse.
A family member’s life changes dramatically when your son or daughter hits 18 as well. I was lucky, being self employed, that I could chose the hours I worked. But overnight, I suddenly had to reduce my working hours considerably. There was no support and Steven needs 24 hour support. Even with his “gold standard package”, I still can’t work more than 25 hours per week.
The other problematic area is that a whole lifetime of experience suddenly counts for nothing. Knowledge, memories, built relationships are suddenly seen as threatening rather than the foundation stones they should be. It is deeply confusing for the family because, on the whole, during childhood your input is valued by the State. Upon the arrival of an 18th birthday card, you become a nobody in a nothing system.
This isn’t meant to be a whinge post. I love my role in Steven’s life and know it couldn’t be any other way. But roll on #LBBill and a day when the State recognises the reality of life for the over 18s of the social care world and their families.
Steven has two great fears. One has arisen every Christmas since 2010. The other fear is a constant. The first fear is about being taken away from his home “for a long break after Christmas”. The other is about me falling ill. Put the two together and it is a recipe for the most unimaginable stress and anxiety.
Sunday evening, I knew that I was going down with a cold. When I woke up yesterday it was full pelt. Steven is alerted straightaway because “Dad is talking in a different voice”. I tried to describe the word “hoarse” to him once but he got terribly confused that I had swallowed a horse! I left early for my respite evening and curled up on the sofa under a duvet and had an erratic sleep between 6pm and 6am.
Tuesday is a full on day in the Cowley house. When Steven gets back from swimming, we do a compilation tape for his disco tomorrow. He expects me to sing along and repeat back his narrative story to each song. Then we watch a Gladiators video and I am expected to play the part of John Sachs (the commentator), John Anderson (the referee) and Fash (the compere). And to round the day off, Steven runs through the Mr Bean video he watched yesterday, describing in the most minute detail every scene from the show. You can probably imagine that my voice, croaky at the start, had descended into an inaudible rasp five hours later. This leaves Steven beside himself with anxiety. Crying. Hitting himself. Hitting me. Screaming. Throwing anything he can lay his hands on. Needless to say, my verbal reassurances make the anxiety worse as I have no voice.
At times like this, my fury with social services launches like a rocket. They kept him away for a year for “assessment and treatment” and he came home with post traumatic stress. Only I’m not allowed to call it that. As the council’s in house psychologist put it – “He’s not been fighting in a war”. At most, she would acknowledge “a degree of anxiety” but dismissed the idea that the Unit may have played any part in the causation. The council have maintained that position – “we’ve done nothing wrong Guv” since 2010, probably under the advice of their legal department who possibly feared a bigger damages settlement.
Their position completely blocks off seeking external input into the issue though. I don’t think I’d want to seek their help anyway but I couldn’t bear sitting in a room with the speech therapist and the positive behaviour team again as we discuss possible material for a social story to help Steven with his “separation anxiety”. Or they might get the psychiatrist involved, who will inevitably introduce a new cocktail of anti psychotics. Or worse still, God forbid, the positive behaviour team, ever on the lookout for a new specimen, might suggest another period of assessment & treatment.
The PTSD ( for that’s what it is) is there all the time. Day in and day out, Steven (and me and the support workers) find our best way of dealing with it. But when the two major triggers collide, we know it’s a time for hard hats and battened hatches.
Roll on January.
P.S. I just wanted to add that this is a rant post, a get it off my chest post. I’m not looking for advice. Each time I post something like this, I am inundated by the positive behaviour crowd across the country offering their words of wisdom. Not today please chaps.
Another question of grave importance has just arisen for Steven as he listens to U2 during his Sunday morning music session:
“Dad – Bono hasnt found what he’s looking for. Bono’s looking for his what Dad?”
“Dunno Steve. Perhaps Bono’s looking for his socks?”
“Not socks Dad. Bono’s socks are on Bono’s feet”.
” Dont know Steve. What is Bono looking for?”
” Bono’s looking for his blue Walkers salt and vinegar square crisps”.
“Has Bono found them Steve?”
“Bono’s crisps are in Simon LeBon’s belly. Bono is cross”.
Dilema sorted, Steven carries on with his session, occassionaly muttering, ” fucking Simon LeBon”.
It’s been two weeks since the furniture was delivered to my new flat and I was able to start working and “respiting” there. I’ve done two weeks of work there and four overnight stays and it is definitely going to take some getting used to. In the change of a calendar leaf, I suddenly have a very different life to the one I had in November.
I’ve been staying at the flat on Monday nights as that has been my regular respite night for the past couple of years. I arrive there about 2pm and return to Steven’s at 10am the following day to get on with the housework before he returns from swimming. I chose Wednesday night as my second night at the flat. It is my late night at work (finishing at 8pm) and I normally don’t get home until 8.45. Steven usually takes himself off to bed about 9.30, so we don’t have much to do with each other on Wednesdays, so that seemed a good day to chose for the second respite.
Wednesday this week was great. My last client cancelled, so I was free from 7pm. I phoned home to have an end of the day chat with Steven and then the rest of the evening was mine. I made some dinner and then had half an hour in the bath. I then took the duvet off my bed and snuggled up on the sofa to watch The Apprentice with a can of lager and a packet of Jaffa Cakes. This may sound rather mundane to some but I can’t begin to describe how different it is for me. Everything I do in the flat, I find myself asking the question – “Good grief, when were you last able to do that?” Half an hour in the bath, uninterrupted is unheard of at home. I can’t remember the last time I managed to watch an hour long TV programme all the way through without having to engage in a Mr Bean or Take That conversation at the same time. I didn’t have to multitask. It was pretty prefect.
The next morning, I woke up at 6.45am and rang Steven straightaway to go through his plans for Thursday. Once I’d done that. I felt at a loose end. At home, there is always something to be done or someone (Steven or a support worker) who wants a chat. I did the impossible – I went back to bed until 8.30. I then did the support worker’s wages online (again without interruption) before my first client arrived at 10am. And all this against the backdrop of the traffic up and down the river – the barges and the swans!
Yesterday afternoon I finished work and didn’t have to be home for three hours as Steven had gone to the Mencap Pool. Ignoring the voice in my head (Dad – I don’t like Mr Poirot – let’s watch Gladiators), I settled down to watch Hercules exercise his little grey cells in Evil Under The Sun. Today, I got to work and went round with the hoover and duster and changed the bed sheets before starting work.
I apologise if this sounds ridiculously self indulgent. But I can’t quite get used to how things have changed so quickly. I have more energy. I have more patience. I have more sleep. I keep noticing and being startled by how some things will never be the same again. The big things – yesterday I picked up the family Christmas cards and felt so sad to realise that for the first time in 33 and 20 years respectively, I wouldn’t be buying a “Wife” or “Mum” card. And the little things – I can leave a Cornetto in the freezer and return two days later and find it is still there.
The novelty will wear off. I will dust less. I won’t notice the ducks. I will have worked my way through my Lewis boxed sets. But for now, I can feel I can breathe in a way that I haven’t been able to for years.
We were notified about a month ago that Hillingdon are changing the company they outsource to that manages their personal budget pre paid card services. The change takes effect from 15th December. In the publicity they sent about the change, they claimed that the new card is much more user friendly.
Those readers with long memories may remember that the problem I have had with the existing card system is that it takes 5 working days to move money from the card into an account. They use a very antiquated BACS system. And there is always a problem at the start of each payment month because the personal budget funds get credited to the card late on a Friday. So, even if I transfer money from the card on that day, it will be the following Friday before the workers get their pay in their account. The problem is compounded as Friday is always a very busy day for me and I prefer to do the wages on either a Wednesday or Thursday. That works fine for three weeks out of every four but not for the week when the funds get credited.
So, the new card is going to be much more efficient we are told. As everything hinges on the timescale for moving money from the card, I thought I’d check with the council. I spoke to the support planner and she admitted that she didn’t know how long it would take to do a transfer but had been assured that, as part of the new contract tender, it would be quicker than the old company. That seemed a little vague to me, so I checked with the local voluntary disabled organisation who the council funds to support their personal budget scheme (Yes – I know!). They also didn’t know for sure but had been told at meetings that the new system is much quicker than the old one.
We’re a week away from going live with the new card. I’m worried that when I come to do the wages on 17th December (for w/e 14th December), I won’t be able to get the funds in time to pay the workers that week. As it’s the week before Christmas, I’m pretty sure that they won’t be too chuffed to be told their wages will be late. Yesterday, I tried to contact the new pre paid card company. Dauntingly, there is no phone number to contact them on. So, I sent them an email instead. This afternoon I got a response – “It takes between 3 to 5 working days to make a payment from the account”.
Exactly the same. Not more efficient for the card user. No benefits at all for the user of the card or the recipients of the money on the card. This must mean that the only gainers are the council. Somewhere along the line, they must be saving some money by using a new card company.
For once, it would be nice if they owned that and not pedal another lie that the change has been done for the benefit and best interests of the service user. It’s just another example of the harsh reality that the service user doesn’t even come into the equation when it comes to service delivery.
Here’s one of my new year resolutions. In fact, I am going to start it straightaway. I am going to avoid clicking on any link that leads to me to an article about “what carers want” or “help for carers”.
Once upon a time, carers may have got some practical help. Or they may have had a kind hearted professional just listen to them for half an hour or so. All of that has gone. The modern way, the modern input is for “signposting”. You don’t get a social worker anymore – you get a human sat nav who signposts you directions to destinations that presumably you didn’t know about. Help with running a personal budget? Take the third turning on your left. Want to sign up for a creative writing course? Take the sharp right bend off the High Street. Nobody does anything. Everyone signposts.
Trouble is, the signposts invariably lead to dead ends. Or you find you’ve been giving a map that has no bearing on your journey. You can go along with it, if you fancy trying to navigate Balham high road with a street map of Dieppe. If I’m setting out on a journey I’m unfamiliar with, I’d quite like a navigator with me, or perhaps someone to share the driving. As a carer, I will get neither – I’ll be pointed to some vague point in the far off distance.
Once you’ve been signposted and you think you’ve stumbled across your destination, what awaits you? You’ll probably find someone putting in a lot of energy into establishing whether you are a carer. I don’t understand those articles that appear with depressing regularity – “how to identify if you are a carer”. Don’t people know? I do. Most carers I know, know all to well what their role is. Has anyone turned up at their local health centre for a blood pressure check to be told – “oh, and by the way, I think you’ll find that you’re a carer on the quiet”.
Once it has been established that you are a carer that is pretty much the end of the signposting. You may be told that sleep is important to fulfil your caring role. You may be advised on the value of a good diet to preserve your health – extending your caring longevity. And if you’re signposted to one of the national carers organisations, you may be asked if you fancy knitting something to help other carers. Oh – and you may be told all about an organisation called the Citizens Advice Bureau, who can make sure that you’re getting all you are entitled to. No more carers links for me. I’d rather not ever have to have another carers assessment. They take up two hours of valuable time but unless you enjoy being patronised, they’re not really worth the effort.
I’ve had five carers assessments over the past four years. I may have had more (or less) but they were so uninspiring, I may have merged one with another. One that was slightly different was when I was identified as my wife’s carer, so this one was done by the NHS. The forms were exactly the same as the social care ones but there was a slightly different emphasis on the questions. This may because it was carried out by a mental health worker and she was applying the same tone and manner that she might adopt with one of her patients. There was a lot of time spent establishing my money management – Did I get into debt? Do I buy lots from catalogues?!! Did I shop around for food bargains? It was relentlessly middle class and deeply offensive. Then with a quick change of gear, she moved on to my decision making capacity – Did I have difficulty making choices? It was such an abrupt change of topic that I thought we were still discussing money. By now, I was fed up. “Funny you should ask that. I can’t make up my mind whether to spend my last £50 on paying the gas bill or buying myself a new gimp suit”. She was on the ball, I’ll give her that, because my facetious remark opened the door for her to question me about my sex life. It was horrid – my weak joke was checkmated as she had an inner wank at my expense. When I got the final assessment through, there was no mention of sex – there wasn’t even a section of the form that came anywhere close to the topic. It was the final humiliation.
Every now and again, someone will come along and ask what I’d like in my role as a carer. I was asked yesterday. It was well meant but the truth is, I don’t really have an answer. I know what I don’t want or need to be signposted to but I don’t have any firm ideas on what I’d like instead. Respect? Time? Time off? An acknowledgement that all the signposting in the world leads to shite city? Sometimes to be left alone and not have to engage with the illusion that carers are valued would be a start.