I love Steven’s use and understanding of language. Listen to him speak some times and you’d swear he was from the 1950s. Even though, some words throw him, especially if they have two meanings (“Better” for example), once he’s grasped a whole phrase, or saying, he just gets it. I don’t think I’ve ever had to explain to him what “Gordon Bennett” means but you often hear the refrain – “Oh! Gordon Bennett” from the kitchen if he’s spilled a drink.
One of my favourites he learned courtesy of Mr Crockett, the garage mechanic in Camberwick Green. Mr Crockett had been clearing up the forecourt of the garage and Brian Cant, the narrator, asked him: “Is everything all ship shape and Bristol fashion?” Steven was immediately interested in what this meant and I told him it meant that things were tidy and in order. So now, every evening, as Steven puts his dirty washing in the machine, we ask him “How’s things Steve?” To which he replies, “Washing is all ship shape and Bristol fashion”. And then we gather around the wireless, with our Double Diamonds and bars of Five Boys chocolate and listen to Round The Horne, before retiring to bed underneath the eiderdown.
I’ve been trying manfully to get the personal Budget all ship shape and Bristol fashion. I’ve had a running correspondence with HMRC for the past month about what they saw as a shortfall in the National Insurance I’ve paid for the support workers’ wages. At first, they said the deficit was over £1000. Then they got it down to £532. This morning I got two letters, both dated 2nd February. The first letter states that they have “calibrated” their records and I don’t owe them anything. The second letter asks me for £596.28. I immediately panic and start the imagine the bailiffs coming in and removing my collection of Allo Allo DVDs. I then take a closer look at the letter and see that it is stating this figure is their “estimated charges raised for moths 7,8,9 in the absence of you supplying actual figures”. This is obviously payment for the third quarter. The third quarter, of which I submitted the tax return three weeks ago. Do I phone them and suggest they have another recalibration of their records?
The same thing happens with the Personal Budget audit that I have to send to the council. Most months, I get a threatening reminder before the forms are due that late return of the audit could result in the personal budget being suspended. You may remember the time that I got a really aggressive phone call from the direct payments manager as there were two cab receipts missing out of a total of 78. Payments of the Personal Budget into the bank account are invariably late. And once I’ve submitted the returns, I never hear anything for months (“we’re working to a backlog”). But for some reason this is okay. I have to be all ship shape and Bristol fashion. But the State can be all haphazard and Newport Pagnellshire fashion.
One expression that Steven can’t get his head around is “I’ll give them the sharp edge of my tongue” but that’s precisely what I’d like to do with these bureaucrats.
I’ve got things all ship shape and Bristol fashion for Steven’s birthday next month. Steven has 26 Mr Bean DVDs & 17 Mr Bean videos. There really aren’t anymore to buy. It’s all the same twelve episodes but in different sleeves. Last week, I was browsing Amazon and noticed there was an American boxed set available. We’ll worry about the different region later. Anyway, it arrived today and it’s got all the Mr Bean Comic Relief sketches on that don’t appear on any of the British versions. What a hero I’ll be on the 19th March. Gordon chuffing Bennett.
Crumbs! My weekend blog post about Lenore Care’s plan to build a “40 unit supported living centre” has leapt into my top 10 most read blog posts within five days. Looking at my blog stats, the most read posts are often when I write about care home stories – St Andrews, the bad Hillingdon Mencap Care home report. I’m not sure why this is. Perhaps it is partly because a lot of readers are parents or carers and these stories tap into the worse fears we live with daily.
I’ve had quite a few social media discussions about the content of the post. To be honest, it has felt a real relief that the majority of people have shared my horror that in 2016 such a place would even be considered. The discussions have often broadened out to include large care homes. It’s at this point some of our paths diverge. A few of the professionals commenting have mentioned looking at the “bigger picture” and how a large care unit may be the best option for some people. I think I am able to see bigger pictures but obviously, as a Dad, I’m going to be interested in the smaller picture too. I guess it’s natural but I can’t help as I read the CQC report on Lenore Care’s current home trying to picture the sort of life Steven would have there. And it’s when I look at the smaller picture that I experience gut wrenching pain. Trying to imagine Steven’s life in Lenore Care Home demonstrates why every single joyous moment we share together carries a terrible sadness at the same time. No matter how much we laugh during a shared music session, it ends with me feeling melancholic because I know in my heart how short lived those joyous moments will be. One day, all the things that give Steven’s life meaning and fulfillment will end because the system wouldn’t consider them important.
Whilst I’m talking about pictures, as well as bigger and small pictures, I think we’re often presented with Distorted pictures as well. I cannot bear how the word “independence” has become exploited. The CQC report for the existing Lenore Care Home mentions independence a lot. But what does it mean in the reality of those 23 people’s lives? I’m not there, so I don’t know for sure. What I do know from Steven’s time in the ATU, was how they put a huge emphasis on “increasing independence skills”. In Steven’s care plan at the time, one of these was going to get the milk for the house a couple of times a week. His support workers were given strict instructions not to let him buy anything for himself whilst he was in the shop – the trip was just about buying the milk. Did that make him more independent? Or did it save a member of staff from having to go for the shopping? I think it was the latter and if I’m right, that is a distortion. In the CQC report it talks about residents accessing the community but then the only examples they give are GP or dentist appointments. To me, that’s just basic care dressed up to sound like something valuable is taking place.
I discussed the blog at a conference in Leeds on Monday. Somebody said that by writing about our lives I add a ” great big slab of reality meat onto the bones of social care discourse “. I guess that’s what I mean by the smaller picture.
Last night, I laid in bed and read 10 recent CQC reports of LD care homes. 8 of them had been rated ” good”; 2 of them were rated “requires improvement”. Needless to say, I quickly succombed to the smaller picture and tried to imagine Steven’s current life fitting into any of these environments. I failed pitifully. I started to question what does a ” good” rating mean. The more I read, the more it seemed to be about doing the barest minimum. Feed ’em and clean ’em. Or as Neil Crowther said this morning, “life and limb care”.
I just want to give a few examples of Steven’s present life and see whether any of it would be possible in a care unit:
- Would anyone be able to spare two hours to put the music together for Steven’s Wednesday morning disco? I doubt it.
- Bearing in mind that Steven needs 2:1 support when he goes out, if the home has a staff ratio of 3:23, would he ever get to his water aerobics group? I doubt it
- Would he have access to a computer/tablet, so he could continue with his Massive Good Songs Radio Station? It takes him about 2 hours each week to browse YouTube to find the songs? I doubt it.
- Would someone remember that he likes to chat to Uncle Wayne on the phone every Tuesday, Thursday & Sunday evening and be able to facilitate that call? I doubt it.
- Would he be able to chose which TV shows he watched, or like in the ATU, would he have to negotiate his viewing with all the other residents? Probably the latter.
- Would he be able to eat his meals on his own because he cannot bear being watched as he eats or will he have to have his meals in a communal dining room? Probably the latter.
- If he wants to buy the latest Take That CD, will someone be able to facilitate that? Will he even have the money to buy a CD or will all his money go on care fees?
- His clothes are important to Steven. They don’t get lost or muddled up in the Cowley house. Will he have to get used to his clothes disappearing or wearing other people’s clothes?
- Will anyone be able to spare an hour on Friday to read through the Radio Times with him, so he can see if there are any Mr Bean repeats on? I doubt it.
- Will anyone be able to sit with him for hours at a time to look through his photo albums and listen to his detail packed stories to accompany the pictures? Will anyone consider his 24 photo albums important enough to actually have them all in the home? Probably not.
- Will he ever go on holiday?
- Will he be asked what he wants for Christmas?
- Will he be able to have six bourbon biscuits every other Wednesday?
- Will anyone try to learn the names of all the minor characters in Fawlty Towers?
- If, the person doesn’t learn Mr O Reilly’s name and Steven gets frustrated, will the consequence bevthat he’ll be pinned face down on the floor? Possibly.
We’re not talking about the most exciting, adventurous life in the world here. I’m talking about a life that Steven enjoys, understands and helps him make sense of his world. It includes love. It includes people who are interested in him.
In my small picture of his future life in a care home, he will lose everything I’ve written about in this post. Despite the care home being given a “good” rating.
P.S. The excellent Steve Broach has just used a Human Rights quote about this post. He’s spot on. This is about those “human rights in small places”. I hardly ever read human rights mentioned in a CQC report. They talk about the Mental Capacity Act a lot but as we’ve learned, the MCA counts for nought if the person’s human rights don’t come into the picture (the bigger or smaller picture).
A good Facebook friend sent me the following link yesterday. Right from the off, the alarm bells should be ringing so violently as to give Quasimodo the hump. The story is about plans to build a “40 bed supported living centre” in Northumberland. (Actually, it’s 40 “units” not 40 beds. The planning application shows that the majority of the units will be 2 beds, so we’re talking likely 80 beds here).
How many readers of this blog live in their own home that happens to have 40 beds? They are not calling it a home – it’s a “centre”. How many readers of this blog live in a Centre? It cannot possibly be supported living as we know it. It’s a mixed up jumble of words that reeks of exploitation. Exploitation of our language. Exploitation of the people intended to live in the centre.
I tried to look up Lenore Specialist Care but surprisingly they don’t have a website. So, is the 40 unit centre their first foray into the world of social care housing provision? If it was, then we could at least put this down to well intentioned ignorance. Unfortunately not. There’s a Lenore Care Home in Whitley Bay, so it must be run by the same company. The Registered Manager of the Lenore Care Home is a Miss Laura Jane Murray. The Service Manager for the new 40 unit facility is Miss Laura Murray Walton. Surely that must be the same person. Here is a link to the CQC Inspection report – http://www.cqc.org.uk/location/1-112142265
One thing that leapt out at me, considering that 40+ beds are the proposal are that the existing care home has 23 beds. Scrolling through the report, the CQC casually acknowledge that for a day shift at the 23 bed facility, there is one manager on duty and two support staff. The residents can’t possibly go anywhere during the day with staff ratios so pitifully low. Don’t the CQC pay attention to details like this? So, that’s their form. The chances are the new centre will be staffed along similar lines.
Now it gets even more fascinating. Here are the three directors of Lenore care Specialists as registered with Companies House:
Hang about a minute. That name Maddison rings a bell. Move your mouse back to the first link in this post and reread the news article. A Lee Maddison is the project leader from Kendal House Properties will oversee the development and construction of the new facility. Perhaps it’s just a coincidence that a chap with the same name as a director from the company who will be running the new 40 unit centre, happens to be a director of the company who will building the facility. Let’s go back to Companies House and this time look at Kendal House Properties:
Well blow me down – it’s the same three directors as Lenore Care Specialists! There can be no doubt that the company given the contract for building the 2016 institution has the strongest possible links with the company who will be running the place when it is built.
I’ll just post one more link that popped up in the Google search. I won’t make any comment besides praying to God that it is not the same pair again – http://www.chroniclelive.co.uk/news/north-east-news/suspects-held-after-dirty-money-1469100
Oh. And Crapita are sniffing around hoping to provide the staff to work in the place – http://www.capitaspecialistrecruitment.co.uk/news/new-adult-support-facility-to-create-100-jobs-in-north-tyneside-17631
The final facepalm moment is the other player involved in the plans. The money for this project is coming from Triodos Bank, whose USP is that they are an “ethical bank”.
Discovering all this last night, I laid awake in bed feeling very nauseous and very frightened.
I woke at 5.30 this morning with the a thought bouncing around my head. Many many times in this blog, I have posed the question “what happens to our young learning disabled people when they hit 16?” I’ve even put a call out for a willing academic to do some research on the subject.
The thought this morning was – suppose nothing happens.
Well, nothing beyond the normal anxiety that every 16 year old experiences as they start to think about leaving school and preparing for adult life.
Up until 16, the person attends and has the familiarity of school. Hopefully, they have had parents who look out for them and where they still have parental responsibility.
And then BAMM. From swimming in the reasonably protected pool, the gates fling open and each person is boomeranged into shark infested waters. Sharks like St Andrews, Lenore Care Specialists and the hundreds of others around the country who only hear the sound of kerching. The gate slams firmly on the parents and families and the person is left at the mercy of Jaws. Without a Roy Schneider.
If I’m right, that makes me even more nauseous and beside myself with terror.
And I don’t even live in Whitby.
Last week, George Julian wrote a shaking the truth stick blog post about the void that exists between organisation’s declarations about how much they value experts by experience and the reality of how much (little) they are prepared to remunerate those valued experts.
In the same week, the CQC announced that they were reducing the pay of their experts by experience inspection teams by a half. I don’t understand the politics of this but it looks like the CQC has outsourced their experts by experience to a private company and that company has halved the pay. It doesn’t really matter who did it but shows up again, the lack of accountability when you get stuck in the outsourced maze.
Today, I have had first hand experience of this disrespect shown to experts by experience. I want to say, I’m not knocking the organisation. They are doing what they think best to preserve their tight funds. But I think it’s an interesting example of the lack of value given to the people who could have a really valuable contribution to make.
I have been booked to speak at an event in Birmingham in the spring. This morning, I was informed that they wouldn’t be able to meet my fee but would pay £100 for the day plus travel costs.
As I am self employed, I would have not received the £165 I would normally earn on the day I’d be in Birmingham. They weren’t prepared to pay for overnight accommodation, so I’d have to travel there and back in one day. I’ve done the journey before and from leaving my front door to arriving at New Street station, the journey takes four and a half hours. Doing a return journey in one day, would mean I’d need an extra four hours support for Steven that isn’t covered by the Personal Budget. I’d have to cover those extra hours (£42) out of my pocket.
So, I would be £207 short but only receive £100 for my input. I would be paying them £107 for my “valuable experience”.
Needless to say, I had no choice but to pull out of the engagement.
It’s actions and words again. Government, Charities, all the players in the social care world regularly trot out that the input of ” experts by experience” is valued and crucial for their learning. The actions reveal any value comes with a Poundland price tag.
I’m not greedy. But I’m not willing to be exploited either.
Sometimes I am accused of bad taste when I write a Committee Room Five piece for this blog.
After today, I think Committee Room Five is no more. Nothing in that fictional Newport Pagnellshire Majestum could ever come close to the stinking, festering tasteless suggestion from the latest Southern Health Board minutes.
Over the past few years, we have repeatedly heard Southern Health announce that they have learned lessons from the horrendous crimes they inflict on learning disabled people. Today, we can see that they have learned another lesson – how to make sackloads of money out of the disaster they have created.
Mencap have a representative on the Southern Health Board of Governors. Her name is Liz Hall. It should be good. The “Voice of learning disability” has an input and could offer an important insight in addressing the zillions of issues raised by the Mazers Report, Monitor, the CQC, Several Coroners, the Health Secretary, NHS England, etc etc.
Instead, the spokesperson for the “Voice of learning disability” chose to vomit all over the people she claims to represent.
I can’t write any more. I am too shocked and repulsed by this latest nauseating turn of events. I’m filing this post in an attempt to stop myself putting my fist through the wall.
Here is Liz Hall’s minuted contribution to the latest Southern Health Board Meeting:
“This sad affair with Connor Sparrowhawk has triggered off, at last, the enormous training issues that are still prevalent in society, including general hospitals, education establishments, training of the public, schools, the police force, etc. Shall I go on? However, it’s an ill wind that blows nobody any good and indeed one feels that perhaps Connor’s parents can take some comfort from this tragedy that has at last shown up the enormous ‘gap’ in training that has been shown up. It’s not only in Hampshire and Oxfordshire – sadly it’s still there all over England and in many other countries in the world. So here is our opportunity to begin some very exciting training of the public, police forces, nurses, doctors, school teachers, social workers and above all hospital staff on how to communicate with those with learning disabilities and involve their families more effectively in their care and life styles which we as a health authority, along with the rest of England begin to understand how one communicates, protects, and includes more of us all in their lives. We have achieved it better with other groups or so called disabled people so let’s begin to engage in training – we could make some money out of it too.”
CoG 26.01.2016 Agenda Item 02 – Extraordinary CoG 05.01.2016 Page 6 of 19
And least we forget. This is what Southern Health consider award winning, top class training, worth every penny of £1m:
I’ve ben tweeting today about my latest dilemma with the Personal Budget. I keep swinging between resentment and a feeling of guilt that I’m being too greedy.
When we were first told that we had to have a personal budget, I asked for three nightshifts a week. The LA “awarded” two. Since, I’ve had my own flat, we’ve actually had a support worker present on six nights per week. Two are paid for out of the Personal Budget. On Saturday, a friend stays over and takes charge if there are any problems. On Tuesday, the support worker ends his shift at 6pm. He starts again at 6am on Wednesday. He choses not to go home as he has a long travel but stays over. I pay for two further shifts out of my pocket at £130 per week. I’m running out of money, so this is not sustainable.
Why is this important to me? I’ll be 57 in a couple of months. I have less energy than I used to have. If I don’t get a decent night’s sleep, I’m good for nothing the next day. I have a job where I have to be very attentive. I have a caring role where I need to have my brain switched on at all times so I can respond to Steven’s very detailed conversations. Dealing with “Services” is incredibly draining – 1000 times more so than caring for Steven. Dealing with Steven having a meltdown is a piece of piss compared with having to work out your tactical approach to having a Fairer Access to Care Services Assessment. Having someone work nights really works. For months now, I get about six hours sleep each night and Steven has learned that if he needs anything in the night, he sorts it out himself or asks a support worker.
So, why don’t I just go back to the care planner and ask for the Personal Budget to be increased. the answer in one word is fear. I have been warned and know that it has already happened to several people in the borough, that if the costs of living in one’s own home are deemed “unreasonable” by the council, the person will be moved into a supported living placement. Much cheaper because the resident’s budgets are automatically pooled (whether they want to or not) and both day and night support is shared between all the residents in the flats. Even though Steven would hate this and he would be at risk, it would undoubtedly be a cheaper option.
The only thing that I’ve found ever works in discussions with the LA is money. Getting respite in the first place was down to me making a strong financial case for it. Steven is only still allowed to live in his own home because I was able to demonstrate a huge financial savings from the old arrangement of commissioned agency support. Best Interests, the Care Act & Wellbeing don’t even come into it.
Harking back to my last blog post “What Happened to Sad”, I learned through bitter experience in 2010, that it is very risky to express an emotion or bring an emotional element into your argument. If I cried over what they were doing to Steven, it was recorded for their witness statements as “Mr Neary is too emotionally needy of Steven”. If I expressed any anger, it went down in the statement as “Mr Neary is unable to work co-operatively with the professionals”. So, eventually I shut up and didn’t express any emotion at all but that was viewed in the witness statements as “Passive aggressive”. Life is emotional. A carer’s life can be extremely emotional. But best not to express or allow emotions to enter into the negotiating a care package arena.
I’ll get it sorted. If I move some hours here and cut some hours there, I think I’ve got enough to cover one other night, leaving me only having to fund one night myself. That’s okay. I don’t need to ask and run the risk of having Steven’s life turned upside down. Of course, because the Personal Budget is so micro managed by the LA, I have to be careful about how I present the changes. There is nothing “flexible” or about “choice” with our allocation. Every penny of the budget has been “awarded” for something specific and moving money from day support to night support will probably be seen as breaking the contract. To be honest, I don’t care. I can feel so weary by the surveillance and the bureaucracy that in a perverse way, the weariness becomes part of my suit of armour. I’m neither worn down or worn out but it could easily happen.
Please. Let’s not call this Personalisation. Or being in control. Or person centred Care. Or choice.
It ain’t any of those things.
I don’t very often write about my work. For two reasons. Firstly, no matter how careful I try to be, there is always the risk of breaking someone’s confidentiality. Secondly, I know that some of my views are not very popular in the therapy world. I can get away with it when writing about social care issues. Although I’m in it, I, like all service users and their families, are kept firmly on the outside by all the experts. In the counselling world, I’m speaking from the inside.
This morning, I got involved in a Twitter discussion about the disappearing world of normal emotions. Over the past few years, I hardly ever hear clients reporting feeling “sad”. They will tend to use the word “depressed” rather than “sad”. I often have people turn up requesting “anger management”. It all goes swimmingly until we start addressing that anger is a perfectly normal response to an external stimuli. I often discuss in supervision why people seem quite happy to announce their label – “I’m a bit OCD” but run a mile from experiencing the normal emotions of living.
A few years ago, I had an initial session with a woman in her late 60s. She had been married for 40+ years and repeatedly described her late husband as “my soulmate” or “he meant everything to me”. She told me that as she had been struggling to get over her husband’s death, her GP had diagnosed her with depression and prescribed some Prozac. Everything she said made it sound that she had been widowed for several years but halfway through the session, the penny dropped. “How long since he passed away?” I asked. “Three weeks ago”, she replied. Three weeks. “You’re not depressed. You’re understandably sad”, I said. She couldn’t accept “sad”. She had brought into the idea that she had a condition because she was sad over the loss of her soulmate. It was very cruel.
Not so long ago, a client put me on the spot. He had talked at length about the very destructive relationship with his mother. He said, “I’m sorry Mark. I guess you think I’m too angry”. To which I replied, “Too angry? I’d say you were not angry enough”. It was an honest but not a particularly useful intervention on my part because he couldn’t grasp the idea that anger is a perfectly normal human reaction.
Somewhere along the way, probably influenced by Big Pharma, we forgot that we can feel “sad”. Anger became a word to diagnose a dysfunction of some sort. In the therapist’s bible, the DSM, there are now so many personality disorders, that this industry needs constant feeding. And the only way it can do that is to turn the normal responses to being alive in the world into psychiatric conditions. It’s dangerous, because as we are constantly encouraged to aspire to happiness, we have to learn to supress the polarity. And if we can’t, there will always be a DSM disciple to pathologise us and medicate us. I’m of the school that believes that the inappropriate prescribing of medication actually blocks the normal feelings and creates the imbalance that the medical world are telling us the pills are correcting. Someone who has been repeatedly sexually abused as a child is going to feel angry. They don’t need to be told that their horrendous experience created a chemical imbalance and that only medication can correct that imbalance.
Let’s try and relearn that even if we feel overwhelmed by sadness, it is more useful to our humanity to stay with the emotion and experience it phenomenolgically.
If you’re a client in the social care world with learning disabilities, expressing a normal emotion is especially dangerous. Firstly, for the system to function, that emotion cannot be recognised. I remember Sara Ryan’s blog post from the time Connor was in the ATU. The Unit were very keen on people recognising and recording their emotions. So in Connor’s bedroom, he had a faces chart where he was encouraged to plot his emotion day by day. Sara visited one day and noticed for five days running, Connor had put up a “sad face”. Whilst the arseholes were applauding him for being able to identify and name his feelings, nobody gave a monkeys about the message. This young dude is very sad. Daily. I don’t think it even registered. Far too challenging. Steven had something almost identical in the ATU. He was expressing his distress in a way that was much more acceptable for the managers and therapists and after four weeks, they stopped as they had “achieved a great piece of work”. The distress was never attended to.
The double bind that hits the learning disabled in in patient services is that expressing their emotions is often used as justification to keep them there. This is what the expert witness said in Neary vs Hillingdon 2011: “However, in relation to the counting of incidents in the course of functional analysis, he recognised the risk of circularity, with bad behaviour arising from confinement being used as a reason for continuing the confinement”. It’s interesting that even an expert psychiatrist making a positive statement on Steven’s behalf, had to turn expressions of severe emotional distress into “bad behaviour”. I guess that’s what happens when we cannot acknowledge the most common of human reactions.
Someone during the Twitter conversation said that “it’s like they’re trying to turn us into perfect human beings”. I don’t think it’s about being “perfect”. I think it’s about being compliant. A diagnosis of a personality disorder keeps us in our place and medication shuts us up. Sorted.
I think a perfect human being is one that is happy. And sad. And angry. And all the other “negative” emotions that we are no longer allowed to feel.