It’s The Law. If You Want To

I spoke recently at an MCA conference. The title of the conference was “Embedding the Mental Capacity Act”. I want to point out that I’m not knocking the organisers or any of the people present, who all seem committed to getting it right. But “embedding”? The MCA is over 10 years old.

One of the speakers asked for a show of hands of who was familiar with the MCA Code of Practice. About 1/3rd of the 150 strong audience were unfamiliar with it. The speaker also talked a few times about “if you use the MCA…..”. I don’t think for one moment that he believed the Act is optional but that sort of language can seriously give the wrong impression. It’s not a choice. It’s the law.

Matt Graham, who has done more than most to raise the profile of the MCA, tweeted last week, that lots of people still see the MCA as a “tool”. Same thing. It suggests something for your professional kit bag that you can pull out if you think it might be useful. It’s not a tool. It’s the law.

I don’t understand how, in social care, the law can be ignored. Or, and I think this is probably more the case, not even be introduced to the people expected to carry it out. Between 1987 and 1999, I was the training officer attached to the housing benefit department of a London LA. During that period the Poll Tax was introduced that meant some serious retraining for every member of staff. I don’t think I would have been able to get away with, come 1994, saying, “I’m sorry. I’m still embedding the Poll tax regulations”. The law around Housing Benefit was constantly changing and my job was to receive all the circulars from the DHSS and teach the new law. My job was a mix of constantly running courses for existing staff about new legislation and updating the induction course to incorporate the new legislation for future new starters. Anything less and I would probably have been sacked.

Amongst the questions I was asked at the end of my talk were: “Your story was five years ago. Do you think the same mistakes could still happen?” After quietening down my hackles, I mentioned three of the 7 Days of Action dudes, Eden Norris, Stephen Andrade and Tianze Ni. They’ve all been in ATUs for several years and the MCA hasn’t touched them at all. Why? Do the professionals in their cases not know that the MCA and DoLs exist? Or have, post Neary vs Hillingdon, the professionals come up with cunning ways of getting round the pesky nature of the MCA and putting the client first. Those three dudes are all held under the Mental Health Act and I’ve never heard the MCA mentioned in any of their cases.

I was also asked why are families so ignorant of the MCA and don’t push for their rights to be upheld. Come off it. The introduction of the MCA starts at that time when people are in transition from children’s services to adult social care. Your whole world has been thrown up in the air. Or you feel like you’ve just wandered off the edge of a cliff. It is also the time as we know from the evidence, from mid to late teens that the ATU vultures start circling. Knowledge of the MCA at this time would be crucial but how are families expected to know of its existence? You don’t. You’re too busy finding things for your transitioned son or daughter to be doing with their adult life; wrestling with personal budgets; scouring the country for suitable support teams. Unless someone tells you or you stumble across it, The MCA won’t figure on your radar.

If I go into a pub today and light up a cigarette, I know that I’m breaking the law and shouldn’t complain too much if I’m punished for it. Those simple, straight forward rules just don’t apply in social care.

Did Moses have as much trouble “embedding” the ten commandments?




The 1950s (with Facebook)

“I’ve got my country back and I’m over the moon”.

That’s what a chap at the bus stop announced to his fellow passengers this morning. The fellow passengers were me, two East European students from Brunel, a woman with a buggy and two ladies from the over 60s housing on their way into Uxbridge.

The woman with the buggy, started to egg him on, whilst having a messenger conversation on Facebook. The two students looked uncomfortable and looked away.

I really wasn’t trying to provoke an argument. I was genuinely interested because I’m not sure what this phrase about “getting our country back” actually means.

Jim’s picture was straightforward: White, Jobs aplenty, Housing aplenty, Respect and “decent shows on the telly”.

The elderly ladies joined in and for a couple of minutes we toyed with the idea of conscription.

The woman with the buggy said that her partner might get back into the building trade, “after all the Poles had gone back home”.

The two students left the queue and disappeared through the underpass.

The bus arrived just as Jim was announcing, “If the great future is like the 1950s, I’ll be happy”.

I got on the bus and went upstairs. I didn’t know what else to contribute to the conversation.

I guessed that Jim was about my age, possibly a bit younger. Did he know the 1950s?

I drifted off into a Rupert Brooke poem situated in a Midsomer type of backdrop.

I saw Steven in an asylum. No clothes bar a nappy. Chained by the ankle to a bedpost.

Jan Tregelles would be CEO of The Spastics Society.

I don’t know what period this reclaimed country is located in.

As my friend said, It’s some vague time in the 1950s. And it’s got Facebook.

42nd Street

“Steven will not be invited to view the property in Horseshoe Drive. Bidding closed yesterday and he came 42nd out of all the people who bid for the property”.

Four hours later, I’m on the floor.

42nd? I can’t even begin to describe the feelings that come with hearing that Steven only came 42nd. all I know is that it feels like all energy and heart has been drained from me at the moment. He’s disabled. He is homeless and has been living in temporary accommodation since November 2013. His house is due to be demolished in April 2017 to make way for a new development.

This afternoon, Steven’s advocate, the brilliant Jayne Knight and I met with his social worker. A housing officer was meant to attend as well but couldn’t make it. The meeting was arranged a couple of weeks ago, before the house in Horseshoe Drive came up. Jayne knows the form of these processes and the purpose of the meeting was to get answers, one way or another, to three questions. We have been asking these three questions for the past two months but nobody will answer them:

  1. Will Hillingdon tap into one of the many funding streams available that could help with securing a home to buy or a privately rented property?
  2. If we go ahead and buy Steven a house/flat, will Hillingdon cover the mortgage interest payments?
  3. If we go ahead and rent Steven a privately rented house/flat, will Hillingdon cover the rent via discretionary housing payments?

Jayne and I are prepared to do all the leg work and go and find and source a new home for Steven. But there’s no point in us doing that, if Hillingdon refuse to support the move. Today, with no housing person present, we still didn’t get answers to those questions. So, it’s one final letter to be sent off today asking the questions all over again, a seven day deadline for a reply and then a judicial review letter.

Hillingdon’s position is that they don’t have to do anything until November. Steven is unlikely to move up from 42nd position in that time. He might but he could as easily move down! In November, with the demolition six months away, they will reconsider his banding. Even then, it will still be down to me to bid for properties that may or may not appear on their bidding list. Bear in mind, the house in Horseshoe Drive was the first suitable property since February. I was told that I must continue bidding between now and November, to demonstrate Steven’s commitment to a move! I failed abysmally to describe what a depressing thought that is to the social worker. Having to check their Locata system every Thursday. Fighting a small glimmer of hope over the weekend. Then told on Monday that Steven won’t be selected because he’s slipped down the hit parade from 42nd to 44th.

Local Authorities excel at this sort of pointless endeavour. They love it. I’ve had a carers assessment every year since 2007 and even though each one takes 90 minutes, none of them have produced anything. I used to have to go to monthly meetings with the LA psychologist and the Positive Behaviour Support team to pour over logs of every aspect of Steven’s life. Nothing happened. I fill out endless monthly Personal Budget audit forms and send them off and never hear a dicky bird in return. Lots of pointless activity that leads to nothingness. I’ve now got at least six months of more of the same.

The social worker said at one point, “What you need is a bridge between Steven and Housing”. I replied, “Yes. You are that bridge”. But I’m a fool. Social Care don’t do that sort of work any more. Neither the Social Worker or the Housing Officers have the first idea of their statutory duties. Listening to Jayne reel off the Care Act, the Equalities Act and being met with total indifference was so dispiriting.

The social worker let slip that housing has something called “direct allocations” that bypass the bidding process. We may find ourselves in a direct allocation position come November. But scarily, I read Hillingdon’s policy on direct allocations and you only get offered one property. It could be anywhere. Take it or leave it.

I appealed to the social worker’s knowledge of Steven and to people with learning disabilities in general. When choosing a property, I have to consider how it will impact on the care plan and package. Is the property near the places that Steven goes to? If not, that has implications for the travel element of Steven’s Personal Budget. I have to consider the travelling of the support workers to and from work. We’ve had a very settled team for five years. I don’t want to jeopardise that by being forced to move somewhere that they can’t get to. There are hundreds of factors like this. This to me is the meat and potatoes of a social worker’s work but I know I’m ridiculously old fashioned. I don’t think it even registered. When someone keeps repeating, “I hear what you’re saying”, you know that they’re not hearing what you’re saying.

Jayne knows her stuff. I’m learning fast. We have a legal team on standby ready to do the business.

It shouldn’t be necessary.


What Do Points Make?

Completely out of the blue, a potentially suitable house for Steven came up on the council’s property search website on Thursday. It’s the first one since the first week in February.

I got into an immediate flap & heard myself saying to one of the support workers, “but I’m not sure I know the rules of the game”. Because that’s what it is, a game. A very cruel game. This is how it works.

Anyone can make a bid, regardless of your banding. Steven is a Band B! That’s better than a C but not as good as an A. The bidding game starts at 1pm on Thursdays and closes at 4pm the following Monday. Your bid isn’t acknowledged, so you have no idea if you’ve bid correctly. I bid by text first. But panicking that it hadn’t registered, I did a phone bid too. Oh blimey – has my second bid cancelled out my first bid. Will I be punished for over bidding?

Sometime on Tuesday, the bidders are grouped off. The Top Five and The Next Five. If you’re outside the top ten, you don’t hear a dicky bird. The Top Five are invited to a viewing. The Next Five sit and wait and hope that one of the Top Five drop out. It’s a false hope. If you’re number 8, you might as well be number 888. You haven’t got a cat in Hell’s chance of being successful. All you can do is sit at home and stick pins in models of numbers one to seven. If the Top Five all decide they like the place, then a Panel from the housing department decide your fate. You can make a supporting statement as to why you should be chosen. Rather in the same way that Big Brother nominees can appeal to us not to evict them.

If you’re chosen as the winner (” You can’t beat a bit of Bully”), you have to move fast. You sign the contract and get the keys and start being charged rent the next day. Decorating? Utilities? Removal van. All got to be organised in a day.

Coincidentally we’ve already got a meeting with housing and adult social care arranged for Tuesday. Steven’s fabulous advocate is coming and will be pushing their Care Act duties. The timing is good. If we’re number four, the meeting could move us from out of the medals into the gold medal position. Often in game shows, the person lying last going into the final round comes through to win – “It’s the Double Money round”.

At the moment I have no real idea if the house is suitable. All I know is that it’s got 2 bedrooms (tick) and the street. It’s about a mile from where Steven currently lives. I’ve been in pointless planning mode since Thursday. “Buggar. There’s no fish and chip shop close by. Have to buy a bike so the support worker can ride to The Golden Plaice on Thursday evenings”. ” Shall it be blinds or curtains?” “What sort of packing will I need for the Mr Bean cardboard cut out?”

Pointless pondering because we may be number 7. Or number 215. Or I may have done my bid wrong. Or the Head of Panel may have got out of the wrong side of bed that day.

And I haven’t told Steven yet as I don’t want to cause him unnecessary anxiety. But on Tuesday, I may have to tell him that we’ll be moving by the end of the week!

“Steven Neary – come on down”.

Pictures of Nothing

Following on from yesterday’s post, I had a strangely tearful start to this morning. When I came downstairs, Steven had already breakfasted and was looking through a photo album of snaps from 2003-2007. He started chatting about the photo below. I remember it well. It was the day we met the transition manager to adult services for the first time. I had just got back from the gym and my wife who had been round with the hoover three times already was nagging me to get changed before our “future” arrived.


The photo could have been taken today (although I look a lot less beefy these days) but seeing us sitting there set me off. We were so naïve. So gullible. Completely unaware of the horror of what transition into adult services actually entails. The afternoon before we became aware of what it’s like to be on the receiving end of Nothing.

I had a dream last night that I haven’t processed yet. I was part of a group of people invited to the House of Commons to witness the debate about LBBill. I kept interrupting the speakers. A Conservative Lady Peer started to frown at me. We went for a drink afterwards and I spilled my pint all over Richard Huggins’ best suit. I’m not sure why I’m telling you this but it feels relevant.

Anyway, here’s some photos of what Nothing (and Something) looks like.

Here is the living room where Steven currently lives. He is so content and safe here. Every morning he comes downstairs, opens the curtains, sets up his picture chart for the day and says, “Good morning Cowley. Good morning Mr Bean”:

Living room 1Living room 3Living room 2

Hillingdon’s only response to Steven’s homelessness once the road is demolished is to say I have to bid for properties for him on Locata search. Yesterday, there was one property. A 2 bedroom flat on the top floor of this place:

Rabbs Mill House

At the same time, me and Steven’s advocate have been looking at properties to buy or rent in Cowley. Both these options are reliant on Hillingdon agreeing to supporting the housing costs. Here’s a sample of one to buy and one to rent, both within about a five minute walk from Steven’s current home:



The first is a 2 bedroom house to buy: the second is a 2 bedroom ground floor maisonette.

My biggest fear, and I guess is where the tears are coming from, is that by doing nothing, Hillingdon will leave it to the last minute and offer two options. One of their awful, low staffed, supported living studio flats. Or worse. Here –

St Andrews


I’ve gone through a whole smorgasbord of feelings since waking up this morning. I started with a post holiday perkiness. By lunchtime that had lurched into abject, shaking terror and since mid afternoon I’ve been boiling with fury.

Because of nothing.

It’s now four weeks since I wrote to Steven’s new social worker asking her to convene a meeting with herself, the housing manager, Steven’s advocate and me. Since then, we’ve got a solicitor so I added her to the list too. The meeting was to be about looking at solutions to Steven’s forthcoming homelessness.


Two weeks ago I sent a reminder, pointing out that we only want a meeting to get some reassurances about the type of property we should be looking for.


Today, I was just about to draft another email when a reply pinged into my inbox. No meeting. Just reiterating the housing manager’s dismissive statement that led to me asking the social worker to intervene.

Nothing they can do. It is MY responsibility to search their Locata service and bid for any suitable property that appears. Nothing else they need to do.

Out of interest I searched Locata. It was exactly the same as it has been since September 2012 when Hillingdon first made Steven homeless. There were 6 one bedroom flats only available to the over 60s. And 1 two bedroom flat situated on the 10th floor of a tower block just round the corner from us.

Nothing suitable.

Plenty of privately rented properties available but we don’t know if they’ll meet the full rent. Round my way, the local HRA is £300 per month below average rents. Plenty of properties to buy but we don’t know whether they’ll cover the mortgage interest with HB. That’s why we need a meeting. To point out the different funding streams that are available to them. To remind them of their legal duties.


Over the past few weeks I’ve been following the increasingly distressed tweets from Mrs Nicky Clark. Nicky’s daughter, Emily’s place at her residential school is being withdrawn in 19 days time. The LA are doing nothing about housing, leaving everything up to Nicky and blocking everything she comes up with. As each day passes, Nicky’s tweets become pure blind panic. The social worker told Nicky that if she doesn’t find somewhere, Emily will have to go to an ATU. She’s not Ill. She doesn’t need assessing. She doesn’t require treatment. She needs a home.

Nicky keeps pointing out the breaches to the Care Act that Shropshire council are committing. It’s not just the Care Act though. It’s the Equalities Act, The Mental Capacity Act, the Housing Act, the Autism Act, the Human Rights Act. There’s probably several more.

The double standards are Sickening. Most parents experience exclusion and dismissal from services once their child passes 18. Yet both Nicky and me are being told it is solely our responsibility to find a home for our children. With both hands tied behind our backs, blindfolded and with a mocking LA ready to pounce and deprive our children of their liberty.

They do nothing but punish.

This is how people end up in ATUs. If, God forbid, Emily is not found a home in the next 19 days, the LA will be rubbing their hands with glee. They’ll have got out of their legal responsibility and won’t have to pay a single penny for however long the incarceration lasts. This is the common passport to ATUs and then the whole social care, medical, private provider, AMHP, BIA industry cranks into action.

And achieves nothing worthwhile. Because their focus is in completely the wrong place.

Please don’t offer advice to this blog. There is nothing more I can do to resolve this situation for Steven. There is nothing more Nicky can do. We know our law but when you’re met with those two favourite LA tactics, delay and silence, you can’t get out of the starting blocks in accessing the law. Nothing happens and it’s hard to challenge nothing.

It’s nothing centred, nothing care.

Postcard From Norfolk Day Four

What a weird day. Reflective. Emotional. Holidaying.

Last night we had our annual team meeting. It turned into the most practical conversation about the Human Rights Act and the Mental Capacity Act I’ve ever taken part in. You often hear professionals talk about bringing the law to life. This was it.

The day before we came on holiday, Steven was adamant he didn’t want to come. After a few hours, he was able to explain why. “Holidays are a bit busy for Steven Neary”. This was miraculous. He wouldn’t have been able to engage with this self reflection five years ago. He wouldn’t have made the connection between his anxiety and unsettlement with the fact that holidays are a bit busy. He would have just reacted noisily & sometimes aggressively to the loud pier. This level of self awareness would not be picked up on during a mental capacity assessment. There wouldn’t be the time nor the wherewithal.

As a consequence, this week has been a very different holiday. Steven has shaped it exactly the way he’s wanted it to be. As usual, I printed off lots of places we could visit but Steven preferred to reject all those and create a home from home, albeit with a very long swim and spa each day. I think it’s probably been his idea of a perfect holiday. And as it’s his holiday, why should it be any other way?  It’s been a valuable experiment and lessons have been learned.

So, last night’s meeting had this very much as the context to explore capacity, choices, unwise decisions, not making a decision. We all agreed that Steven has the capacity to make all the decisions about the construction of his holiday experience and can therefore make unwise decisions if he so wishes.

This is all about his maturing and the life wisdom he’s gained.

My only tiny question mark about all this is what about new life experiences? Steven will still need to be shown new experiences to see if he likes them. Yesterday, Steven thoroughly enjoyed the new DVD, Sunshine on Leith. But if wasn’t for the people who know him, Steven wouldn’t have known that film exists. Before someone can exercise a choice, the choice has to be created and that will inevitably require someone to facilitate that.

I woke up this morning to Twitter reminding me that it was five years ago today Justice Peter Jackson handed down his judgment in Neary vs Hillingdon. Needless to say, this set me off down memory lane.

But it’s all connected. Commentators often call Steven’s case a landmark human rights/MCA case. Life is very different 5 years on but as this week shows, it is still about those pieces of legislation. There is no professional involvement anymore to muddy the waters, to judge Steven’s life, to “control and coerce”.

This week’s postcards ends with Steven’s best interest decisions for today: a lay in until 7.30, a Take That disco, a huge cooked brunch courtesy of Michael the support worker, a white knuckle hour in the deep end of the pool, and as I write, some post swim chill out time with The Full Monty.

A month after the 2011 court case we went on holiday to Somerset. Whilst there, I wrote the final chapter of the book. I concluded with, ” I think we’re going to be okay”.

We are.