Mr Soppy

Steven has a new “feelings” word. Soppy.

For quite a while now, he has been able to identify and name the following feelings: happy, sad, cross and anxious. Now he has added “soppy” to his list.

“Steven Neary’s gone a bit soppy” has now become a familiar phrase in his vocabulary. To accompany the statement, he goes red and looks a little sheepish but with a huge grin on his face.

And what makes Steven Neary go a bit soppy?

Jet from Gladiators
Mel B
Suzie Dent
Mary from Coronation Street!!!!
Jay from Bucks Fizz
Sonique
Jo Wiley

It’s nice to feel a soppy man

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False Start For The Personal Budget

A pissed off post. Money. Money. Money.

First up, I’ve been really busy over the last few weeks, speaking at various conferences across the country. I like doing them and from the feedback I receive, I think I have something important to say. But it’s like getting blood from a stone trying to get paid for them. As I write, I haven’t received a single penny from any of the organisations that invited me to speak. One of them, Birmingham University, got me to prove (a) my identity and (b) that I was a British National and now appear to have lost my birth certificate. This is the one where Justice Baker spoke – I wonder if they put him through the same hoops. As my normal work is self employed, I obviously lose my normal pay when I’m doing a conference. And on top of that, I have to pay ahead for the hotel, travel and carer for Steven. Things were so bad last week, I had to borrow some money to buy the weekly shop. It’s a shame but I’m going to have to ration these events in the future.

On to the personal budget, which is turning into a bit of a nightmare.

From my very first discussion with the support planner, we talked about the start of the new financial year as the starting date for the personal budget. So, all my plans were geared to taking over the staff and transport payments from 7th April. That fits in nicely because the council pay their direct payments on a 4 weekly basis and that is the date the next payment is due. Now I’m told that the personal budget starts from 1st April but it won’t be credited to the card until 7th April. So what am I meant to do for that first week? Ask the support workers to wait a week without pay? Keep Steven indoors all week because there is no money to pay the cabs? Systems again.

And I have big doubts whether the money will even be available on 7th April. I’ve written before that Hillingdon’s procedure is to issue me with a pre paid card and I transfer money from the card to pay the wages and the cab firm. Today I was told that the card was ordered last Thursday and takes about 10 working days to arrive, followed later by a PIN number. Ten days takes us to three days after the personal budget should have started. And then I still have to wait for a PIN. I find this astonishing. It’s now about 2 months since I met the support planner and she said that setting up the PB from April gives us “more than enough time”. Apparently not.

The other big pain is the fares of the cab firm. It was probably my fault but when I submitted my original proposal to the council, I asked the regular cab drivers what an MPV cash fare would be for each of Steven’s journeys and based my figures on what they told me. The cab firm, after several adjustments, are still asking for £40 per week than I’ve been allocated. I don’t understand why there should be such a big discrepancy between what the drivers are saying and what the managers are saying. It doesn’t make any sense to me. I’ve got a couple of cheaper quotes from other firms but it will be a real wrench to leave this firm as Steven has such a good relationship with all the drivers. The only other alternative is for Steven to lose one of his trips but that doesn’t feel right also.

I’ve said before that I can see why Personalisation is a great big flop. I can see why people don’t want to touch personal budgets with a bargepole. I really thought I was doing everyone a favour when I made my proposal to take over the whole budget myself. I shouldn’t have been so naive or altruistic. The amount of time and energy dealing with lots of labyrinth systems isn’t worth the end result. Tomorrow, I have two hours free before work as Steven has planned a 4 episode Mr Bean session with his support worker. That is now going to be consumed by trying to fix up a new cab contract and working out how and how much to pay the support workers for those “Bermuda Triangle” days from 1st April to 6th April before I get the personal budget.

Why was I such a fool? (No need to answer that)

A Smile, A Shrug, A Sob & A Security Alert

Here’s another funny thing.

A few days after the report into LB’s death was published which found that it was a “preventable death”, Southern Health shut down their Twitter account. No posts in. No posts out. The official announcement was that it was for “security measures” – someone had been attacking their account. A couple of days later, the whole thing was restored. It’s hard to believe a word of it. The timing was incredible, as it stopped people posting their responses to the report.

Three weeks before our HIgh Court hearing in 2011, I received a call from Steven’s social worker’s manager, needing to talk to me urgently. This was the story – the day before the phone call, a person had called at the reception desk in the Civic Centre and left a letter for the social worker. He showed me the letter – it was pretty vile. It didn’t actually make any outright threats towards the social worker but it was very unpleasant. The letter was signed by “A friend of the Neary family”. The manager told me that the matter had been reported to the police and the social worker had gone off sick, in a distressed state.

I immediately offered my help. I offered to meet with the police. It never happened. I offered to view the CCTV footage in case I recognised the person delivering the letter. I was told that wouldn’t be necessary.

After that initial meeting, I never heard another word about the letter. I couldn’t stop talking about it. If a friend of the family was really threatening the social worker, would they sign the letter, friend of the family? Why didn’t the police take any action? The whole story seemed to have many many holes in it.

One outcome was that the social worker was signed off sick for four weeks and therefore wasn’t able to appear as their key witness at the hearing. As the central person in the case and the main decision maker of the events of 2010, the judge never got to hear her version of events.

The social worker’s manager mentioned the annonymous letter on the first day of the hearing but it didn’t go anywhere. Neither the judge or the barristers questioned him about it. He made a rather nervous statement and then the matter died.

Was it genuine? Was it constructed by the PR department to paint the social worker as the victim? Was it invented to get the social worker out of giving evidence (where let’s face it, she would have been crucified)? Who knows?

But I remembered it when the Southern Health security alert popped up. I guess it must be quite useful, when you know you are going to be revealed as the perpetrator of a dreadful act, to suddenly shift the emphasis, so you become the victim.

A remarkable double coincidence or a PR strategy?

A Smile, A Shrug, A Sob & A Stab

Southern Health have obviously decided on a new tactic over the past couple of weeks. I doubt it will be discussed at their board meeting next week but I’m pretty sure it’s been discussed by many of their great and good behind closed doors. The CEO, Katrina Pearcey, in another car crash interview this week said that she wanted LB’s family to meet her ” as an individual and as a CEO”. She talked about her “devastation”. And she casually mentioned that from the very beginning, Southern Health have been waiting for a dialogue with the Ryan family and that offer is still on the table when they have been through the “grieving process”.

Southern Health statements don’t stand up to any deconstruction at all – you get a couple of mini farts and the statements die in an abyss of management crapspeak. But here, in a few orchestrated words, KP has suddenly become the victim. She is an individual who is suffering as a result of LB dying on her watch. (Suffering but reminding us that she’s a CEO in case we forget where the power lies). And the family have become an unreasonable obstruction. Obstructing KP and Southern Health in their “grieving process”. In the week that the incredible #107days was launched – a campaign that is and will have an enormous impact on the pitiful state of adult social care – there is also the slightest hint that Sara Ryan is becoming a little unstable in her grief. Southern Health have chosen to stab, but cloaked by a smile and a shrug and a sob.

I encountered this spin shite back in 2011. All of Hillingdon’s court statements presented me as a stroppy, unco-operative, unreasonable father who was blind to the realities of Steven and Hillingdon’s attempts to act in his best interests. I had got my son all wrong and I was resistant to their analysis of who he is. Worse than their picture of me, in order to get their own way, they presented Steven as a dangerous, unboundaried psychotic.

One day during the High Court inquiry, I was sitting outside the court eating my lunch and was approached by one of the journalists who had been in court. We instantly liked each other and chatted about the events of the week. Then he showed me the infamous press release that Hillingdon issued the day before the hearing started. I now know what he was trying to do – he was leaking it in the hope that I would pass it on the barristers, who would bring it to the attention of the judge. Unfortunately, I’d had 18 months of Hillingdon’s spin of Steven and I guess that I had become deadened to their language and presentation of him. It was shocking but I wasn’t shocked, so I did nothing about the press release, except throw it in the bin. On the final afternoon of the hearing, the journalist took the bull by the horns and handed the press release to the barrister, who along with the official solicitor, hit the roof. But that was nothing compared to the judge’s reaction. He re-entered the courtroom, slammed the statement down on his desk and said: “I am dismayed at this grandstanding”. He called the council’s press officer into the witness box and discovered the press release had been authorised by the director of adult social care, the borough solicitor and the head of corporate communications. It had come from the very top. Here’s what Justice Peter Jackson had to say on the matter in his final judgement:

“On 20 May 2011, the eve of the hearing, Hillingdon circulated a three-page media briefing note to most of the national media. The document was designed to counteract adverse publicity that Hillingdon has received, and against which it had not attempted to defend itself. Nonetheless, it is a sorry document, full of contentious and inaccurate information, and creating a particularly unfair and negative picture of Steven and his behaviour. I learned about the document by chance on the last day of the hearing, expressed dismay, and asked for an explanation. I am told that it was authorised by the Director of Social Care, the Head of Corporate Communications and the Borough Solicitor. It is now accepted “in hindsight” that an error of judgment was made in issuing the briefing note. That is indeed so, though again hindsight has nothing do with it. In addition, Hillingdon has unreservedly apologised to the court. That courtesy is appreciated, although an apology for the document is in truth not owed to the court but to Steven and his father.

I also note that Hillingdon has done its best to undo the situation by contacting every recipient informing them that I had directed that no part of it should be published in any circumstances. Again, I appreciate the intention behind this, but I should make clear that I gave no such direction. The only control that this court has exercised over reporting about Steven is in the form of the very minor restrictions on the reporting of the hearing itself, as referred to above. Other than that, the media will cover the story in whatever way it chooses, and no doubt it will continue to respect Steven’s need to be left in peace, as it has done since the hearing in February.”

They tried to shaft Steven but got regally shafted themselves.

Why do they it? What are Southern Health hoping to gain by presenting a picture that surely everyone can see through and be appalled about?

I suspect that if you inhabit Planet Southern Health (or Planet Hillingdon) you see nothing but yourself. Your planet revolves around your own narcissism. You think you are teflon coated and if anything happens to challenge that, the challenger must be destroyed. LB is nobody and nowhere in any of their public statements. The organisation is all that matters.

Or perhaps, they really just believe their shit.

Ding Dong The DoLs Are Dead?

On Thursday, the House of Lords published their report following their investigation of the Mental Capacity Act. 60 witnesses were called and there were over 200 written submissions – it was a very thorough piece of work. Being an MCA and DoLs geek, I’ve been waiting weeks for the publication but I didn’t dream for one moment that it would be so hard hitting and damning as it was. The whole morning, I found myself muttering – “They listened. They bloody well listened”. I’m not sure whether the other professionals who gave evidence felt the same but for a carers’ experience to be heard and taken on board is completely revolutionary. That just doesn’t normally happen in social care. Quite the opposite – there often feels like a deliberate move not to hear the voices of the carers and families.

Going for the jugular from the off, this is what the Lords had to say about the Deprivation of Liberty Safeguards:

“The intention behind the safeguards—to provide protection in law for individuals who were being deprived of their liberty for reasons of their own safety—was understood and supported by our witnesses. But the legislative provisions and their operation in practice are the subject of extensive and wideranging criticism. The provisions are poorly drafted, overly complex and bear no relationship to the language and ethos of the Mental Capacity Act. The safeguards are not well understood and are poorly implemented. Evidence suggested that thousands, if not tens of thousands, of individuals are being deprived of their liberty without the protection of the law, and therefore without the safeguards which Parliament intended. Worse still, far from being used to protect individuals and their rights, they are sometimes used to oppress individuals, and to force upon them decisions made by others without reference to the wishes and feelings of the
person concerned.

The only appropriate recommendation in the face of such criticism is to start again. We therefore recommend a comprehensive review of the Deprivation of Liberty Safeguards with a view to replacing them with provisions that are compatible in style and ethos to the rest of the Mental Capacity Act.”

How about that! Go back to the drawing board. Having been on the receiving end of the abuse of the legislation, this is overwhelming news. And tens of thousands of people being unlawfully deprived of their liberty! All those stats we read on DoLs have always felt meaningless. That’s because they were (are) meaningless. All those hidden people away from their homes – we should be ashamed of that.

I feel a note of caution. I think it would be unwise to scrap them before something better is in their place. For all their faults and the numerous way they are abused by supervisory bodies, in the absence of anything else, they do provide a route for families to challenge the detention. I’ve said many times (and its quoted in the report) that without the DoLs in place, Steven would now be in the hospital in Wales that Hillingdon wanted to send him to. Challenge without a DoL in place is nigh on impossible. Lots of people contact me, where their sons and daughters are in similar situations to Steven in 2010 and they cannot get a DoL authorised for love nor money. Authorities may not want to go down the DoL route because it means their actions will be scrutinised. No DoL means they can effectively do what they like without any external monitoring. So, please, please start the planning for a replacement legislation immediately but don’t leave the people at the mercy of the DoLs even further up shit creek without a paddle.

Another section of the report that had me singing was about capacity assessments. About a year ago, I wrote a series of blog posts about the downright unfairness of forcing the learning disabled to justify and evidence all of their decision making process – something that the rest of the population never have to do. I also felt, that it was extremely unfair that the only thing being measured as proof of capacity/incapacity was the person’s cognitive functioning. What about their feelings? What about their gut instinct? What about their right not to make a decision? The Lords called for a review on how mental capacity assessments are carried out.

The other biggie is the recommendation for an overseeing body who has overall responsibility for the MCA. So simple. We hear time and again of how big systems have no accountability. The awful death of LB in an NHS assessment and treatment unit and the vile actions of the provider, Southern Health, illustrate this only too tragically and shamefully. I’m not sure if one single body will solve all the problems but it’s a very good start. How can the people charged with implementing and carrying out this legislation been allowed to ignore it for so long. The Act is nearly 10 years old for godsake. I don’t buy this stuff about it is still being “bedded in”. And I don’t buy “ignorance” as a wholesale explanation for the failing. The are plenty of examples in the report of authorities deliberately manipulating the Act to get the outcome they want. I can’t think of any other piece of legislation that can be ignored or abused so wantonly without any serious repercussions. You and I would never be allowed to get away with it.

There were many other features of the Neary vs Hillingdon case that showed up in the report as being more widespread than just Hillingdon. The ones that stand out for me are: the poor use of the IMCA service. In our case we were blocked from getting an IMCA for over 6 months. The report recommends consideration to be given to P or their family being able to approach an IMCA service directly rather than have to wait for a referral from the supervisory body. I can die a happy man if that one is taken up. The Lords tackled the best interest assessments and decisions and raised huge questions about them too. Here’s what they recommended:

“The rights and responsibilities of the different stakeholders which are properly conferred under the Act are largely unknown. This makes the effective exercise of those rights, and the proper discharge of those responsibilities almost impossible.

The general lack of awareness of the provisions of the Act has allowed prevailing professional practices to continue unchallenged, and allowed decision-making to be dominated by professionals, without the required input from families and carers about P’s wishes and feelings.

A fundamental change of attitudes among professionals is needed in order to move from protection and paternalism to enablement and empowerment. Professionals need to be aware of their responsibilities under the Act, just as families need to be aware of their rights under it.”

Bloody brilliant.

What happens next? That’s the big question. Will this incredible report gather dust somewhere and be forgotten as people go out about their business in the same old way. That can’t be allowed to happen. Everyone with a stake in this must continue to push for the big change to happen. We owe it to all the people who fall within the scope of the Act.

Best Interests & Regards

I’ve just had a very full on three days. On Wednesday I travelled up to Halifax to speak at a forum for social workers on Thursday morning. On Thursday afternoon, I was whisked across the borough to meet a group of best interest assessors. Then I travelled to Birmingham to speak at a training event for BIAs yesterday morning.

I met some fantastic people. I’m always slightly nervous that I may meet some hostility, only because I was involved in a battle with the system and the audience is made up of people from the system. My anxiety is always unfounded. At these two events, like previous ones, I received a warm welcome and the feedback after was very heartening.

After the Halifax talk, I laid in bed on Thursday evening, trying to understand why I get the response that I do. It’s been 4 years now since the unlawful deprivation of liberty and three years since the High Court, so I guess that I am more emotionally distanced from the story. It feels weird to see the audience experience such a range of emotional responses to the speech. I see people crying when I talk about the night Steven used the return of Robbie Williams to Take That and escaped from the Unit in his pyjamas. A few minutes later, I see people laughing out loud when I tell them about Steven lobbing the risk assessment and daily log binders off the balcony and Hillingdon’s response that we didn’t have a risk assessment for the risk assessment folder. And I see people start to get angry when I talk about the “fake transition home plan” and how constantly disappointed Steven was by the ever shifting goalposts. The audience may go through the emotional wringer but I usually feel quite calm during the delivery.

Until yesterday. And I had to seek refuge in the garden as I became a blubbering wreck. In Birmingham, I shared the speakers platform with Justice Johnathon Baker. Since I’ve become a DoLs’ geek, I’ve read lots of his judgements and become a big fan. In his introduction he talked about why his work is important to him and for him it is because “people matter”. His humanity underpinned his whole talk. After my talk, he had to leave and we had a farewell chat. We shook hands and he said: “Peter sends his regards”. I was slightly confused – “Peter?” Then it became clear that he meant Justice Peter Jackson, the judge in our case. With that, he left and I crumbled. When I’m talking, I’m in control but that lovely warm comment came so unexpectedly, that it cut through all my self protection. Fortunately it was the lunch break and I hid in the garden to compose myself.

Changing the subject, I had a recurring thought during both events. It struck me how very alone and isolated the best interest assessors can be. They may have regular(ish) forums like the one I was attending and training days but neither of the groups seem to have the opportunity for immediate support. This wasn’t unusual – it’s been like that with every BIA team I have met across the country. In my world of counselling, I have weekly supervision and if I have a difficult session I can have immediate access to a peer to work through whatever is going on for me. Often it’s more about my stuff that is triggered off by the client’s material, or simply offloading the load of being with someone else’s pain. BIA’s must hear some terrible stories. The people I meet at these conferences are great decent people with endless humanity. Who supports them through the emotional side of a best interests assessment? It made me think of any of the BIAs in the Neary case. She’s just been and had a harrowing two hours with a distraught father and a persistent IMCA – how does she get her head together after she’s left our flat? It seems a big gaping hole in the process to me. And may possibly offer an explanation for bad assessments – the lack of support may grind the BIA down. They may be unwilling to stick their neck out, knowing that they could be in for a rough ride with the supervisory body. They may not be willing to go that extra step for P because that may require an emotional resource that they are drained of.

I often read people in the social care world on Twitter bemoaning the loss of “reflective practice” in their work. That seems a real shame to me if that door is now pretty much closed for people who genuinely want to do the best by their clients.

As Justice Baker said – “people matter”. And without the important matter of reflective practice, both worker and client must surely suffer.

Finally, thank you to Brian, Mark, Helen and Karen in Halifax and Wendy in Birmingham for looking after me and to all the pople who spoke to me during the breaks with really positive feedback.

Halifax & Petula Clark

I’m off to Halifax in a couple of hours to speak at a social work conference tomorrow. And then when that is over, travel on to Birmingham for an event with some best interests assessors on Friday. Although it is work and there is a hell of a lot of travelling, I am trying to treat it like a break as well.

As I was finishing off my notes this morning, I realised that at the point I will be starting my talk tomorrow, it will be exactly the 4th anniversary of the meeting I attended with Hillingdon where they set up the fake “transition home plan”. They had been “assessing” Steven for 8 weeks but i wasn’t allowed to read their reports until I arrived for the meeting. It was very upsetting to read everything they had logged and understanding how distressed Steven must have been at being there. It was also at this point that they started to talk about not believing me – they were so convinced by their 8 week picture of who Steven was, that they discounted my 20 years experience before that. Their view was that if Steven is like this in the Unit, then he must be like it all the time and I must underplay or not report incidents with him at home. You really can’t fight that sort of attitude.

It will be odd telling the whole story again tomorrow. The scars are still there for me and Steven but it has to be said that by going through that awful experience has given me the opportunity to speak at events like the next two days. By fighting the door closing on Steven and him being incarcerated permanently in a hospital in Wales, doors have opened and it feels okay to walk through those doors.

When I go away on these trips, we always tell Steven that “Dad is sleeping at counselling work”. A couple of weeks ago, he said to me – “Dad doesn’t sleep at counselling work anymore” (I haven’t been away since October). I wasn’t sure if he was saying this as a good or bad thing but I was a bit nervous about mentioning this trip. I needn’t have bothered. Steven has been busy making plans with his support workers and has got the next two days nailed. Here are some of the highlights:

This afternoon – visiting his mother to read his old photo albums.

Tonight – listen to his Blood Brothers CD. This will probably mean Steven and Michael having to act out the final death scene and singing “Tell Me It’s Not True” very loudly.

Tomorrow after swimming – Mrs Doubtfire, with the support worker having to make sure there’s no cream around for the “face pack in the fridge” scene.

And my favourite – I just heard Steven telling Alan – “Alan, after pepperoni pizza on Friday, Steven Neary and Alan will be singing Petula Clark songs”. (I’m glad I remembered to book a hotel or I could be sleeping in the subway).

It’s great not to be needed.