Expertise

Another day. Another Twitter debate about why thousands of people are trapped in ATUs. Another debate where professionals who should know better pull out their trump card – “Lack of local expertise and skills” to shut down the real truth – lack of will and vested interests – being exposed.

I’m too fed up with that tired, offensive excuse being trotted out with depressing regularity. The implication stinks – the person is too complicated and challenging to be living in their own home and an institution is the best place for them. Engaging in that conversation perpetuates the fantasy, so let’s stop doing it.

Instead, let me tell you a few things that have happened in Cowley over the past fortnight and the input of Steven’s “unskilled, inexpert support team”.

1. Brought and fitted new living room curtains after a meltdown led to the slat blinds lying in a crumpled heap on the floor.

2. Taught Steven what the African lyrics in Going Back To My Roots mean.

3. Sat for an hour on Steven’s bed, reassuring him when he was upset and anxious about my late return from Scunthorpe.

4. Extended a shift by 45 minutes (unpaid) to go to the shop to buy some Crumbled ham.

5. Upon delivery of his new CD, learned and discussed the difference between Laurence Fox and Mr James Hathaway.

6. Took a pair of pyjamas with a hole in the crutch, home to repair.

7. Noticed the small sweet shop was busy and waited outside singing Shania Twain songs until the shop cleared.

8. Discovered a TV channel that plays 1980s music videos 24/7.

9. Mowed the back lawn.

10. Rearranged Steven’s schedule when they realised Take That were appearing on the Ant & Dec show.

That’s the sort of skilled expertise that’s developed when you have human beings interested in each other.

 

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Lady Hale Comes To Cowley

Today, Steven had his Community Deprivation of Liberty Safeguards Assessment.

The need for this came about from the Cheshire West case and Lady Hale’s famous acid test. Up until that point DoLS had only applied to people who lacked capacity and were in a care home or a hospital. The acid test extended the scope of the safeguards to, among other things, supported living and crucially in our case, people living in their own home. As I wrote last week there isn’t one minute of one day as I watch Steven living his life in his own home that I consider he is being deprived of his liberty. The idea is beyond ludicrous. Mind you, I never think about the acid test either as he is microwaving his sausage and spaghetti hoops.

The new social worker came and she was great. I think we made an unspoken pact in the first five minutes, along the lines of “We both know this is nonsense but we have to do it, so let’s not debate the point of it and just do it”.

As Willy Russell did with Blood Brothers, I’ll give you the ending at the start. It’ll save time and then I’ll describe how the conclusion was arrived at.

Yes – Steven is being deprived of his liberty in the Cowley house.

The first part of the acid test is, Is the person free to leave on their own? I struggled with this because for me, “free” doesn’t come into it. Steven is assessed as needing 2:1 support for his, and others’ safety. Steven has never tried or asked to go out on his own but for the purpose of the assessment, that is neither here nor there. The fact that he needs someone to go with him to the shop to help him with the money is enough to tick box one of the acid test.

The other part of the acid test is, Is the person under constant supervision? This is more involved than question one. The language of a community DoLS is very different to the language of a care plan. In his care plan Steven is assessed as needing 1:1 support in the home, partly for the same reasons as question one but also because he needs help with things he struggles with. “Support” in a care plan becomes “Supervision” in a community DoLS. I got stuck at this point because I don’t really see Steven needing supervision, using my normal definition of the word. But that is also neither here nor there because for several reasons, Steven is seen as being supervised. Here are a few of the deciding factors (There were a lot more that I’ve already forgotten):

1. Help with some aspects of personal care – teeth cleaning, shaving & arse wiping.

2. Help with setting the controls on the washing machine.

3. Help with changing the settings on the TV from TV to DVD.

4. Help with cooking a meat and two veg meal.

5. Help with organising repairs if anything gets broken.

6. Help with doing the online weekly shop.

7. Help with reading letters.

8. Help with dialing the number on the phone to arrange his transport.

9. Help with potentially dangerous household chores (like ironing).

And that was that. All those things amount to Steven being deprived of his liberty in his own home. I came periously close to a “the king has got no clothes on” moment by remarking that this new perspective of DoLS must account for all the learning disabled people living in their own place or with their families. The social worker confirmed that there are 1000s in the borough going through this process. It also covers people with dementia living with their families.

I did have the rather uncharitable thought at one point that all this feels like a million miles from the Mental Capacity Act, which was designed to be an enabling piece of legislation. Perhaps that’s what’s at the heart of this nonsense – enabled people means less bureaucracy. And we can’t have that.

What happens next? I get the paperwork as the Community DoLS equivalent to a Relevant Person Representative. I’ve forgotten the name of my new title but it certainly ain’t “Dad”. The social worker has “mountains” of paperwork to complete and then the whole lot will be sent off to the Court of Protection for authorisation.

I have it on good authority that it costs the LA £400 to take each authorisation to the Court. Needless to say, some unscrupulous LAs are trying to pass the cost of that on to the person. Just imagine – you might have to pay £400 to authorise your own deprivation of liberty in your own home!

Oh, and in a year’s time we’ll do it all over again.

There was nothing threatening about the process. I didn’t feel personally singled out. It was a nothing process.

Were there any advantages, benefits or disadvantages for Steven in all of this? In case you’ve forgotten after this stream of bewilderment, this is all about his life.

In the epitome of the law of bureaucracy, all this matters not one jot to Steven’s life. Nothing changes. Nothing is made better; nothing is made worse. Nothing happens.

Yesterday Private Eye ran a piece about the Law Commission’s new scheme and quoted considerably from Steven’s 2010 case. I might contact my old buddy, Heather, at The Eye and tell her about today’s nonsense. It’s right up their street.

Just think how many people have had their care packages cut to pay for this administrative balderdash.

Significant People With Significant Stories

Regular readers will know that I’ve been connected with the campaign 7 Days of Action. Over the past three days there have been some major developments in the direction of the campaign. I’ve been struggling to get my head around the changes and what has taken up a lot of my head space; where do I fit (if anywhere) in the new direction.

The big problem for me, and I hope this isn’t seen arrogantly, is that many people see 7 Days of Action as my campaign. It isn’t and never was. One day, I was minding my Facebook business & found I’d been invited to join a private messanger group. The group had been started by several mothers who had family members held in ATUs and we’re starting a national campaign to raise the profile of their situation and ultimately, to get their children out. The group invited several people to join in the hope that the more creative heads the better would bring about a successful outcome. It was my idea to write the 7 daily blogs focusing on one detained dude each day. I volunteered to edit the stories and publish them each day over the first campaign week. I think a big mistake we made was not to set up a Twitter account for the campaign so all the blog stories were tweeted initially from my account and once published, others retweeted and shared across social media. But that was my job within the campaign: it was the families’ campaign. I can see how the misapprehension happened but I tried consistently to put people straight when they assumed I was the leader.

Over the year, lots more people become involved which was great for the scope of ideas that went into the melting pot. A steering group developed and the personnel has changed over time. A second campaign, similar to the first, was run last autumn. Again, I took on the same role of editing the stories but there were many others working just as hard, or harder, on other areas of the campaign. It felt very much like a team effort to me and even though the subject matter of the campaign was harrowing, the creative energy was very invigorating.

A few months ago, something happened that I feared threatened the integrity of the campaign. I’m not going into details because I’m not going to break the confidentiality of the people involved. Lots of discussions took place and I think my reaction may have been over dramatic but I felt uneasy about what could be a compromising position. Others disagreed and the group took the decision to lay low for a while and relaunch the campaign this spring, possibly with a new name. Collectively, the name My Own Front Door was agreed as a way forward and ideas started to come together for the new campaign.

Then Dispatches aired their programme about St Andrews and the group started to see the way forward needed a new tone, a new way of operating. I posted an article about the hospital and my language offended some people. As the group clarified it’s direction, it decided a more collaborative approach was needed and that the angry energy that had fuelled the first year needed to be more considered, if the idea of establishing partnership relationship with providers, commissioners, professional stakeholders was to evolve. This made sense to me but knew it is not my style and that I’d inadvertently stitch things up in the future. So, I resigned from the steering group as that felt the best thing for the campaign. It still does.

Then yesterday, the group announced the decision taken by the steering group which is to run two things with the collaborative project, My Own Front Door running as well as the 7 Days of Action campaign. I must admit, it took a while for the penny to drop for me that that was what was happening. My gut instinct was that the two things aren’t compatible because the approaches and styles are so different. To be honest, I wanted the new group to be brave and run with their original idea as it may lose some people but it might bring a lot of new people on board too.

I couldn’t clarify my thinking though.

Until this morning. I was telling the Get Steven Home story at a conference in Scunthorpe. The other speaker was the wonderfully inspirational Luke Rodgers. Luke spent much of his childhood in foster care but has now set up an organisation called Foster Focus and one of its aims is to encourage care leavers’ creativity to create new and meaningful lives for themselves. Luke spoke about his care experiences from the heart, was witty, humble and didn’t pull any punches considering the audience was made up of social care professionals. His theme was the significant people in his life. It was very real and profoundly inspiring. We chatted afterwards and I realised we both shared a pragmatic view of telling our stories. We didn’t see what we were doing as partnership working. We don’t speak that language. We were telling real stories and what the listeners do with those stories is entirely down to them. It may change someone’s practice; it may not. That is not our responsibility.

It did help me understand that I tell stories. Whether it is mine & Steven’s story, one of the seven dudes’ story or a fictional story from Committee Room Five, that is what I do. That is my contribution to what we originally termed the ATU scandal. And I’m happy with that. I don’t lead campaigns because I have neither the skills nor the energy to do that. I don’t do collaborative working because I don’t have the language or the temperament to do that. I write stuff.

Walt Whitman – Oh Me, Oh Life

“That you are here. That life exists and identity.

That the powerful play goes on and you may contribute a verse”.

Today, I remembered my verse.

 

The Day Cowley Became A Gilded Cage

Oh irony of ironies.

The other day, I resumed my blog after my self indulgent break with a post about the Law Commission’s report on their new Liberty Protection Safeguards – the scheme to replace the Deprivation of Liberty Safeguards.

After I pressed “publish”, I mooched about on the computer for a little while and into my inbox pinged an email from Steven’s new social worker. She has been on the case since last November, although we haven’t met her yet. In the email she was proposing a visit to assess Steven to see if he is “subject to a Community DoL”. Oh dear. We’re back down that road again. It was first mooted back in 2015 but successive social workers have never actually got round to doing it.

I have to say there is not one single moment of one single day as I observe Steven going about his business in his own home where it occurs to me that he might be being deprived of his liberty. Having been through the DoLS process when Steven was in the ATU, there isn’t any comparison between his life then and his life now. The doors aren’t alarmed. He isn’t subjected to face down restraint (or any kind of restraint for that matter). He isn’t given bucket loads of anti psychotics to make our job easier. He isn’t prevented from going out for three months whilst we risk assess all the venues he goes to. He no longer lives an institutionalized life.

So, do the deciding factors in Lady Hale’s Acid Test apply to Steven in his Cowley home? Is he free to leave at any time? Is he under constant supervision? Immediately, I hit a problem because that is not the sort of language we use in his home. Steven’s life isn’t framed that way anymore. In the ATU, Steven was always trying to escape. In the six years since he’s been home, he’s never once attempted to escape. If he wants to go and get some Chewits, he’ll say to me or the support worker, “Want to go to Jay’s sweet shop to get some sweets”. And off we go. I suppose the DoLS assessor will concentrate on the “we” in the previous sentence. Why is it “off we go” rather than “off he goes”? There are a number of reasons. Steven has poor road sense. Steven struggles with money, so would have difficulty paying for his Chewits. If a barking dog was to pass him along the street, Steven will become anxious and possibly kick the dog. That’s why someone accompanies Steven to the shop. We don’t see that as not being free to leave.

The second factor is “constant supervision”. Steven needs someone with him 24/7. This is to support him with those things he cannot do and to prevent him from coming to harm if he becomes anxious. I’ve never once heard the support staff say that they are “supervising” Steven. It isn’t the language of home life but it is the language of the institution. Steven has just put his Carry On Doctor DVD on. There are eight DVDs in the boxed set and he needed my help in selecting the right disc. As the menu is pictorial, Steven was able to select the correct movie from the drop down list. Was my input there supervision? Or helping? Now that Steven has settled into watching the film, I am typing this blog in my room and the support worker is doing the ironing in Steven’s bedroom. Neither of us are directly supervising him.

Graham Enderby, who should know more about DoLS than most, said to me recently: “DoLs were meant to be about getting people back into their homes. Now they are about keeping people from their homes”. He’s spot on. And this ridiculous attempt to assess for a deprivation of liberty in one’s own home has been shoehorned into legislation that wasn’t written with that purpose.

I’ve no idea what is going to happen at the social worker’s visit on Thursday. I’ve no idea of the questions that will be asked. I’m already feeling mightily resistant to Steven’s life being reduced to something that it clearly isn’t. To compound the nonsense of this, if the assessor decides that Steven is being deprived of his liberty in Cowley, the DoL can only be authorised by the Court of Protection. A supervisory body authorisation doesn’t apply in Community DoLS cases. Just think of the time and the cost involved in that exercise. I imagine the social worker leaving on Thursday; Steven and I will get on with living our lives exactly as we were doing immediately before the visit. But a whole team of professionals will burst into action to follow through the bureaucratic process. Once again, another process that is nothing to do with Steven’s life.

Roll on LPS. Perhaps a more sensible approach will be adopted.

The Very Protective Safeguards

Well, I’m back. I anticipated my blogging break to be akin to a couple of months on the French Riviera but it’s turned out to be more akin to an longish weekend in Camber Sands. And the reason why I’ve been hoisted by my own petard? I blame the Law Commission, who yesterday published their new report on their proposals to replace the Deprivation of Liberty Safeguards.

The full report is here:  http://www.lawcom.gov.uk/project/mental-capacity-and-deprivation-of-liberty/

This may sound rather overblown and a trifle pretentious but reading the report yesterday brought home again how much Steven and I are embedded in the history of the DoLS legislation. Seven years ago, I didn’t know they existed as it was around this time that Steven was served the first urgent seven day authorisation. But seven years on, I’m now a fully paid up,  card carrying member of the DoLS Geek club. Yesterday my Google alert function went into meltdown!

It’s very hard to read the new proposals objectively when you’ve been so badly burned by the previous scheme. So, pardon me for leaving objectivity at the door but this is the Neary Acid Test, first thoughts on the new scheme. My acid test is slightly more cynical than Lady Hale’s. My third eye is always open to searching for the openings that enable the state to manipulate or ignore the new legislation. And from my totally subjective position, I can’t help but repeatedly ask the question as I read, would these new rules have made any difference to Steven back in 2010. That is the lens this post is passing through.

Firstly, there is the name change. The Law Commission are only suggesting the name as their focus is quite rightly on the content. However, at the moment, the new scheme is called the Liberty Protection Safeguards. I’m glad they’ve ditched the “deprivation” as that word seemed to give a green light to some to detain people without thought for a more constructive care plan. But aren’t “Protections” and “Safeguards” the same meaning. It feels rather like wearing two condoms. The report makes repeated reference to the new rules being more Article 8 and CRPD compliant – couldn’t that have been emphasized in the name? But I don’t want to dwell on the name as it may possibly change. I will focus on just a few of the changes:

The new LPS are meant to kick in BEFORE the person moves to the place where the detention will take place. At present, the person can be detained for ages before the process starts with an urgent 7 day authorisation. The intent behind this change is to force good care planning before the need to move someone. It also forces a human rights based agenda to drive the process. Like we pressed for with the LBBill, the State has to make a very strong case from the outset that detention is the most appropriate course of action. This sounds like a very positive move. But I worry about all those cases we heard about during 7 Days of Action, that echoed Steven’s pathway to the ATU – their initial reason for leaving their home was for an agreed period of respite, which quickly turned into something far more sinister. Or the person went to a “holding” place as the care provider pulled out of their package. Would these people fall under the new Safeguards from the beginning? And if they don’t, how long before someone notices and acts on the original intention changing.

In a move to cut costs, the role of the Best Interests Assessor is drastically changing. There will be a new role called the Approved Mental Capacity Professional. At the moment, a BIA is an essential part of the assessment process and can recommend that the DoL isn’t authorised or suggest conditions or recommendations to be added to the DoL. Under the new scheme an AMCP will only be appointed in cases of disagreement about the placement or where the LPS is needed to prevent harm to others. In Steven’s case, Justice Jackson questioned the independence of the Best Interests Assessors but the new scheme may compromise that independence even more. The person making the case for the LPS will already be involved in the person’s care planning. Looking at this through our 2010 lens, I know that Whistler’s Mother would have signed the LPS like a shot and would have breathed a huge sigh of relief at the lack of external scrutiny.

At the point of the LPS being triggered, the person will be appointed a “representative”. More than likely, this will be a family member or carer. So, the detained person will not be totally on their own but most family members will be ignorant of the LPS scheme like I was in 2010 and will need signposting to the rights of the detained person. It puts an awfully huge responsibility on an untrained (in the law) family member to be the main external scrutineer of such a major decision.

Another change that makes me feel very wibbly wobbly is the new role of the “Independent Reviewer”. This will be the person who “signs off” the LPS after checking that it is legally sound and that the detention is “necessary and proportionate”. This could be anyone from the “Responsible Body” who is not directly involved in the care of the detained person. It could be a colleague sitting across the office from the person who has assessed and written the authorisation. This seems to me to be a huge challenge in maintaining independence. Don’t forget, we have got to the final stage of the process – the authorisation of the LPS and only one external pair of eyes may have been involved so far – the representative. It is true that the requirement for an IMCA still stands in the new legislation but we have plenty of evidence at how tricky it is to get an IMCA when the state would rather you didn’t have one.

There seems to me to be a rather big contradiction running throughout the narrative for the new scheme. The report talks a lot about the importance of the person’s rights. It also nods to the CRPD with repeated mention of the person’s wishes and feelings taking priority. This is clearly a very positive move. But then, I wonder if those progressive ideas are diluted by the removal of the “best interests” driver and instead having the replacement, “the necessary and proportionate” rule. I’ve seen a few commentators state that they see little difference between the two but I’m not so sure. Although, there has been many debates over the years as to what “best interests” mean, it still feels a more encompassing, person centred idea than just “necessary and proportionate”. When push comes to shove, it could be argued that something is necessary and proportionate, without being in the person’s best interests at all.

The Law Commission have sat on the fence regarding access to court and are leaving it to the government to decide. They flag up a tribunal, similar to a mental health tribunal, as an alternative to a costly Court of Protection hearing. Throughout the 7 Days of Action campaign, I was shocked to hear the many stories of dudes detained for years and the tribunal system having no effect on their detention whatsoever. I know that if I was faced with the choice between a tribunal and the scrutiny of Justice Peter Jackson, which one I would choose.

The scope of the new scheme is being widened beyond care homes and hospitals to include, amongst others, supported living and the person’s own home. I can’t get my head around that last one at all. As I watch Steven going about his daily business, it never occurs to me whether he is being deprived of his liberty. He does not live in a cage, gilded or otherwise. I cannot begin to compare his life in his own home and his life in the ATU, with its daily prone restraint, over medication & stopping all his external activities for three months. Sure, he will always need 1:1 support in the home, to support him with the stuff he cannot do and to keep him safe from himself when he gets extremely anxious. But that cannot fall under the scope of this legislation surely? Mind, one man’s deprivation of liberty is another man’s sensible care planning.

I do like the idea of the law now covering supported living and wonder if it’s now the time for honest and brave reasons from the Local Authorities for authorising a LPS. Round my way, the people in supported living are in their pyjamas and in their rooms from 6pm to 7am. Will we see an authorisation that states the deprivation is necessary and proportionate because, “we are not willing to fund any additional hours”? I wrote about the recent case of Davey vs Oxfordshire CC who reduced Mr Davey’s support by 40% claiming that time alone would encourage his independence. Will the new LPS put a stop to those shameful tactics or at least force the LA to call a spade, a spade.

If I was a trainer, I would sit the trainees down with a copy of the 2011 Neary judgment and ask them to analyse how the LPS scheme would prevent such things happening again. Would the “elephant in the room” of Steven’s real deprivation of liberty being kept away from his home have been revealed sooner? Would the LPS assessments have been more diligent, more fair and scrutinised better than 2010? Would Steven have received the necessary advocacy? Would he have got to court, and therefore, home sooner?

I have to say, I’m not confident of the answer to any of those questions being “Yes”.

But I’m hopeful.

 

 

 

Time Out

I’m going to take a short break from writing this blog. Or rather, I’m going to take some time out from writing about the intimate stuff of Steven’s & my life. If St Andrews suddenly decide to build a new 2000 bed, person centred unit, I might want to have my say on the matter but for the moment, I want to rest the personal stuff and let it heal.

The intention of this blog has always been to present the “normality” of our lives, rather than the object or the animal that the system likes to present. Being so exposing can be a double edged sword. I can achieve my goal but it opens me and Steven up to judgements. Most of the time I can handle that but at times when I’m feeling sad or low, the attention (self induced) becomes an added burden.

I’ve been to the bank this morning and changed all the direct debits into Steven’s name as the OPG requested. It was very straight forward and took about 15 minutes. What I wrote about yesterday wasn’t about the specifics or process of what the OPG was demanding. It was about the sadness I was feeling about how another small part of our family relationship was killed off.

Feeling melancholy, I went from the bank to Tesco to do the shopping for my flat. Most of my trolley had stuff for me but I picked up a couple of bits for Steven for the weekend. As I put the plastic divider on the checkout between my bits and Steven’s, I felt sad. I noticed other families, a woman & her elderly mother, a woman and her son with downs syndrome, doing their shopping together and felt sad.

This all may be self indulgent bollocks. I know deep down, it says nothing about our actual relationship but I can’t begin to describe how wearing it is to have the constant refusal to acknowledge love and duty and mutual interest. After a while, I start to feel very sore.

I just want to say that I’m not criticizing anyone. This is the internet and it has been my choice to bring my private life into a public space. I stand by my intentions but now is the time to withdraw and rest the wounds.

But, I’ll be back 😋

Billy No Mates

I’ve just had a phone conversation with the OPG that I had to cut short because it made me throw up. Literally. I had to cut them short and say, “Excuse me. I have to go to the bathroom”, where I promptly vomited!

Since I submitted the annual Financial Deputy report back in January, we’ve had a series of letters/phone conversations about my management of Steven’s finances. I’m not giving actual figures as last time I did, I received some rather judgemental comments. But all the communication stems from a basic position of mistrust and a presenting position of safeguarding.

I’m aware of the ethos of the OPG. Two years ago, I spoke at the Court of Protection conference. The first speaker was the lead officer for the OPG and she gave a superior, sneering speech which consisted of story after story of families ripping their incapacitated person off. Of course that happens and it is unforgivable but I like to think is the minority. I was so angry, I whispered to the organiser and asked if I could change my talk to give another side to the family deputy.

Today, I decided to take the bull by the horns. We’ve been getting nowhere with these suspicious letters and I clearly am unable to answer their questions to their satisfaction. Fed up with feeling like a slimeball, I decided to ask them, “Tell me exactly what you want me to do and I’ll just do it”.

The sticking point has been those expenses that I pay for on the weekly shop that we both use (Toilet rolls, lightbulbs, Brillo pads etc). Also, those bills that supply the basics we both benefit from (Gas, Phone etc). I’ve never bothered to work out the exact proportions, so share the costs out between us.

The OPG takes the view that Steven is the tenant, therefore all the bills should be in his name and all the expenses come from his account. From now on, if I choose to contribute to those bills, that is down to me and I can pay money into Steven’s account to cover my share. That’s fine and now it has been spelled out, I can start changing all the direct debits into Steven’s account.

The thing that makes me nauseous though is the refusal to acknowledge family relationships and the dynamic that takes place in millions of family homes. And at the bottom of all this is the operating principle that a learning disabled person is not quite human so doesn’t live like the rest of us.

I mentioned to the OPG that the other day, I saw an advert for the touring version of The Jersey Boys and asked Steven if he wanted to go. He was well up for it. It’s on at our local theatre at the end of May on a Friday. I told Steven he could go with Alan & Das, who do the Friday shift and he said, “Want Dad to come too”. I’m happy to go but felt, at £23 per ticket, it was morally dodgy to expect Steven to pay for me too. He has to pay for the support workers but should he pay for me too?  Steven doesn’t really understand money, so won’t know if he’s paid, I’ve paid or the tickets are a gift from Frankie Valli himself. But that’s not the point. It doesn’t sit well with me that he pays the whole bill. In the conversation with the OPG, I compared it to going out with my mate this Thursday. It was his suggestion to meet up but I’ll buy a round, he’ll buy a round and we’ll probably go Dutch on the cost of the meal.

I said to the OPG, “I’m sure you do the same when you go out with friends. Isn’t that what mates do?”

And here’s the killer that left me vomitting: “You’re not his friend though. You’re his carer”.

Eurgh.

Yes, Steven must be independent. Yes, he must pay his own way. Yes, I am a guest in his house, four days a week. I get all that.

I don’t get that learning disabled people aren’t allowed normal family relationships. Nor friends. And I certainly don’t get that in the eyes of officialdom, Steven and I do not have a relationship. Or rather, we do but it is seen as indistinguishable from the relationship he has with his carers.

I’ve made a list of all the organisations and companies I need to phone up and change the direct debit details. For some reason, I feel a bit weepy and can’t rouse myself to get started. They’ve given me until 15th March to comply with their orders, so I need to get my act together.

Sharpish.