The 40 Unit Home Sweet Home

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).

Have a look: http://www.carehome.co.uk/news/article.cfm/id/1573453/four-million-pound-supported-living-centre-to-create-more-than-100-jobs

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:

https://beta.companieshouse.gov.uk/company/07906714/officers

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:

https://beta.companieshouse.gov.uk/company/07905892/officers

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.

 

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The Poundland Experts By Experience

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.

The Ill Wind of 1000+ Learning Disabled Deaths

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:

The Hidden (Emotional) Costs of a Personal Budget

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.

 

What Happened To Sad

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.

The Birds Come Home To Roost In Committee Room Five

Some of the keen eyed amongst you will perhaps have noticed that the Newport Pagnellshire Bugle has been running a series of exposes about the workings of the Social Care Majestum. In particular, they have got great mileage out of reporting the “scandal” of a handful of deaths in our in patient services. (Editors note – you must have jolly big hands because at the last count we’re talking 2888 deaths in the past twelve months). We in the Majestum have been consistently confident in both our recording and reporting of this pittance of unexpected, uninvestigated deaths but it seems that in some quarters, especially within bitter, toxic families, our actions have been questioned.

On Thursday at 9.35am, the CQC will be paying us an unannounced visit to inspect our latest action plans around the thorny issue of the rather bothersome deaths of our service users. Over the weekend we have put together another of our award winning action plans and have made a unilateral board decision to share that plan with you before the inspectors get their jaundiced eyes all over it. The Board commissioned the excellent, Trussell Touch Ups Consultancy (no relation) to build a plan that will see us into the future and keep the press off our backs. And £947k for 48 hours work is an absolute steal. We will be rolling out the action plan at our inspirational tea parties across all work areas over the next 16 years. Without further ado, we’d like to introduce you to our Tool Kit of Pigeons:

The Homing Pigeon Innovation For Death Matrixing

There are four key areas to our plan and we have illustrated these action points with a significant symbolic pigeon:

This is Idris Pigeon and I is for Investigation. Idris Pigeon will lead a team of four work experience investigators who are committed to looking into every demise the Majestum encounters.

This is Ingrid & Ian Pigeon and they represent Involvement. Engage with families and other interested stakeholders. If we don’t involve, then we reduce the odds on who we can shift the blame onto.

This is Lionel Pigeon and he is head of Lessons Learned. For example, we have already revised our educational programme and will no longer be taking service users on field trips in the fast lane of the M4.

And finally we have Trevor Pigeon who stands for all things open and transparent. Gone are the days when we go on the attack when we feel our reputation is at stake. It’s 2016 and we have to take all criticism on the chin.

We think we’re on to a winner. Regardless of what the CQC deems to report back, we firmly believe that our deep dive into the cutting edge of death reporting will have our awards cabinets bursting at the seams come autumn.

The Gang

For anyone remotely interested in the Human Rights of people with learning disabilities, it has been a very very dark week. I don’t even know where to start.

The appalling Southern Health board meeting. Monitor’s announcement that their action is to send in an expert to help Southern Health with their death reporting. Sarah Davies’ Inquest which has left the family with more questions than they had at the start. Another Inquest involving Southern Health with more “lessons learned”. Nina Ni’s announcement that Tizane is being moved to yet another ATU as the current placement are at a loss at how to ” treat ” him beyond prone Restraint 5 times a day. Paula Rawnsley sharing that one of the causes of death on Thomas’s death certificate was “downs syndrome”. Relentless horror.

With each Southern Health car crash people cry out ” why doesn’t anything change?” They are Teflon coated.

The obvious answer is they have no incentive to change. For one thing, there are no sanctions or penalties, either personal or corporate. But, I think, more importantly, they are part of The Gang and The Gang protects itself by the phenomenally successful tactic of disorientation. You don’t know where you are. There is a chasm between the words and actions. That is, if you actually get words. Most of the time you get deathly silence.

The Gang is very powerful. The Department of Health, NHS England, Monitor, The CQC, The Trusts themselves, the leading charities. I’ve read suggestions about bringing a human rights class action against the Gang. On the one hand it’s a fantastic idea but can you imagine the legal army The Gang would be able to assemble.

Two stories emerged this week that for me, are total head melts. In January 2014 when Monitor started their Investigation into Southern Health, they put out a number of strong statements along the lines of “no stone unturned” variety. The main spokesperson for Monitor was a chap called Paul Streat. At the Southern Health board meeting on Monday, there was a familiar face on the top table. Yep. In July 2015, mid investigation, Paul Streat left Monitor to work for Southern Health. The investigator jumped ship and joined the investigated’s flotilla.

On Tuesday, Monitor announced their plan to send in a Ninja expert. It got a fair bit of coverage. Needless to say, Mencap added their two pennysworth and did their usual outraged call for ….. something or other. These calls are empty words because Mencap are embedded in The Gang. What Mencap don’t shout about is that in Liz Hall, they have an appointed governor on the Southern Health board. In exactly the same way, they bluster whenever there is a care home scandal whilst being complicit because the CQC have failed some of Mencap’s own care homes.

That’s the thing with The Gang. You get so tangled up in all the nepotism, you don’t know where you are or who you are dealing with.

The real sadness that after all this time and the media and press playing a blinder, nothing has been able to penetrate the power of The Gang.

Winterbourne View anyone?