An Engagement Announcement

It’s been nearly a year since I started to write my “Death Plan”. I’ve found it such a difficult experience that I work on it for a day and then put it away for a month in order to deal with the pain the one day’s work has generated. The point of the exercise was to put together a series of documents that detail all the things that would be necessary for Steven to continue living his life in his own home after my demise.

I’ve finished it. There’s one more practical job to do. I’m leaving that until the New Year and hope I don’t get run down by a marauding reindeer over the next four weeks.

I gave an interview to the BBC about the Death Plan back in the summer and you can listen to it here:

So, how do I feel now that the task is complete? I feel a small sense of satisfaction. I can’t think of anything I’ve missed out and I hope I’ve covered all bases. It all fits into one folder and it shouldn’t take an awful lot of effort for it to be actioned. But there’s the rub. Even if it was just a one page document, it is still reliant on a professional making an effort. On the other hand, it doesn’t need any professional effort at all. I’ve assembled a “team” and it would be totally realistic for them to take over without any professional input. It won’t be too big a challenge for the team but doing nothing will be a huge challenge for any professional. Can they loosen the reins and not demand a personal budget audit every month? I don’t think they can. Can they accept that a humble support worker can manage the online weekly shop? I doubt it.

And it’s because of those question marks that I have very low moments when the whole project feels utterly worthless. I’m aware that the final plan is basically saying to the professionals, “do nothing”. Do the yearly assessment. Pay the money. And leave the rest to the people who care. To the people prepared to make an effort.

The last two days I’ve been following a thread in the Facebook group “NHS England Learning Disability and Autism Engagement”. It’s a heart sink experience. I don’t doubt the sincerity of the people running the group but it’s another example of “engagement” on someone else’s terms. It feels like, sadly, like the appearance of engagement, rather than real engagement. Because so much of social care is playing at engagement, that’s why I fear for Steven’s future after I’ve gone. In an attempt to keep up appearances and pretend engagement, he could have his life ruined.

Why I feel so fearful for the realisation of the death plan was crystallised by a post in the Facebook Engagement group this morning. A call went out for families to engage with an “evaluation of building the right support”. It’s a cruel stunt. It infers that there’s some secret out there that we haven’t yet discovered and until we do, the current dreadful status quo must continue.

We don’t need any more evaluation. We don’t need any more research. We don’t need any more transforming champions. We know all we need to know. We know what people want and what people need. We know what makes a good, fulfilling life. No more illusory engaging. Let’s do some doing.

For the rest of my life, I know my death plan teeters on a knife edge. It could mean that the second half of Steven’s life could be as meaningful as the first. Or it could mean that the life he loves ends.

For the time being I’ll try and concentrate on the engagement he has with in his life and give a wide berth to the pretend engagement of the people who don’t do.


Arfur Scissorhands

This year’s Christmas at Cowley is being sponsored by 1987.

Steven never asks for more than two Christmas presents. Any more than two and they all get lumped together under Steven’s special category – “Lovely Surprises”. Even though they are “lovely”, the additional presents don’t command his attention and too many lovely surprises is likely to lead to a sensory overload and potential challenging turkey behaviour.

A few weeks back Steven asked for his first present:

“Dad. Edward Scissorhands video. Present for Christmas day”.

And later, to make sure I hadn’t missed the salient point:

“Dad. The Edward Scissorhands video. Not the DVD. The video in the white box”.

That present wasn’t too hard to track down. A bargain £2.85 on Amazon.

The second one was a bit more tricky. With December nearly upon us, Steven watched two Top of The Pops Two Christmas Specials over the weekend. (On VHS). The first one had all the obvious suspects on. The second one drew on more obscure tracks. And it was whilst we were in the middle of the most obscure, that the second present request came in:

“Dad. Dennis Waterman and George Cole. What Are We Going To Get For ‘Er Indoors? Christmas present?”

I didn’t even know that Minder had spawned a Christmas hit.

Back to Amazon. Only one copy available. Vinyl. £10.75. From Germany. (Apparently in Germany Dennis & George give Boney M a run for their money in the popularity stakes). Fingers crossed. It’s due to be delivered between 1st and 20th December.

This morning I popped into Uxbridge on some errands. Dawdling through the market, I spotted a Sony Walkman. Steven used to love wandering from room to room listening to his Walkman. We made him a little handle strap and he used to carry it, elbow bent, rather like Mrs Thatcher used to carry her handbag.

Sod it, I thought. We might as well go the whole hog with our 1980s revival. So I brought it.

It’ll be a lovely surprise.


In a blink of an eye, Steven has discovered a new expression that to the unknowledgeable listener may suggest that Steven has spent the last few years in a finishing school. Manners have become the new currency.

It was only a couple of weeks ago that me and the support workers were chuckling over Steven’s complete absence of regard for the other. I’m alright Jack was our coat of arms.

Two examples. One of my new pairs of training bottoms went missing. We searched everywhere for them. Eventually the support worker found them in a crumpled heap at the bottom of Steven’s wardrobe. I asked Steven how they came to be there and he replied, “Steven Neary put them in the wardrobe”. When I asked him why, his explanation was “Trousers was on Steven Neary’s radiator”. Straightforward. They were on his radiator. They weren’t his. He has no use for them. Get rid.

Des, the support worker told me a similar story. He (Des) was in the kitchen preparing his own meal. A dish of chicken and rice, he had ingredients all over the worktop. Steven came into the kitchen and said he wanted his sausage and spaghetti hoops. As Steven can cook them himself, Des left him to it. When he returned to the kitchen, all his food had disappeared. He asked Steven what had happened to his tea and got the reply, “In the bin”. Again, straightforward. Chicken and rice had no place with sausage and spaghetti hoops so had to go.

Overnight, we now have a new phrase – “If you want to”. On Sunday, we were doing a compilation tape and I asked Steven what song he wanted next. “Dad. Have some Gene Pitney. If you want to”. This morning, Steven wanted a private chat, away from the support workers – “Dad. Can you come in the kitchen? If you want to”. He was asking who is going to be working on Christmas Day & when I told him, he said to the support worker – “Francis, you can have white turkey on Christmas Day. If you want to”.

I don’t think Steven has suddenly mastered unconditional positive regard. More likely, is he heard Dr Hanssen say it on Holby City. It’s a totally unexpected development.

I’ve tried to be more like Steven and be more direct in my communication. I’ve been trying not to let my awkwardness over certain social conventions render me speechless. Today, I blew it. The gym I’ve started going to is run by the former Gladiator, Panther. It’s called Panthers. I keep wanting to ask her if I can bring Steven along one day to meet her. Panther isn’t Jet but Steven would still see it as a big feather in his cap. I see her there often but she’s normally in the middle of a workout and I think it’s terribly bad form to interrupt someone on the treadmill. This afternoon, she was on the front desk and I thought “Carpe Diem”. As I approached, her phone went off and for me, the moment had passed. It felt uncomfortable mooching around whilst she took the call, so I went on in and started my session.

If it had been Steven, it would have been very different:

“Hello Panther. Talk to Steven Neary. If you want to”.

Whose Home Is It Anyway?

Two stories hit the news this week that beg the question, if you are living in a care home, is it your home? Or are you a guest in the provider’s home? Or are you an object to be managed within a service?

The first case is about an information document published by the law firm Ridouts to assist the providers of care homes on their powers to exclude family members from visiting someone resident in the home. The full article is here, under the title, “ASK THE EXPERT – Managing The Relative From Hell”:

ASK THE EXPERT: Managing the relative from Hell

From the title onwards, the language is chillingly adversarial. “It is your home”. “The visitor, effectively has no rights”. “The expression next of kin has no meaning and carries no rights”. Regardless of its legal rightness, would you want someone with such an aggressive attitude to be running the home your loved one is living in?

Those often used expressions like “working together” and “experts by experience” hold no truck for Ridouts. The home is a thing that takes priority over the people living there and phrases like “It is your home” expose where the power lays. To quote Lloyd Grossman – “who would live in a house like this?” It’s not person centred care – it’s Basil Fawlty care.

The second story is even more alarming because it’s not about excluding visitors; it’s about excluding the resident! John Pring has written an excellent article describing the sorry situation:

Lakhvinder Kaur, a disabled woman in her twenties, explains clearly what she wants from her life: to live in her own home, manage her support and engage in a social life. Surely the aspirations of many people her age, disabled or not. For seven years Ms Kaur has been a resident in a care home. This means she has no tenancy agreement, no choice in the staff who support her, no choice in how she lives her life within the home.

What has Ms Kaur done that has prompted the home to try and evict her? She’s invited friends back for late night visits. Most people of her age do that all the time. She’s insisted only female staff attend to her personal care. In other words, she’s asserted her dignity. There are other indignities but in short, they all add up to a provider affronted because one of their (paying) residents wants to put their life ahead of the needs of the service.

These two stories may be extreme cases but I don’t think so. They may stand out because of the language and the degree of professional violence. But as recent campaigns have shown, there are so many insidious ways that a resident learns that their home is not really their home. Sadly most disabled people whether they be in supported living or assessment and treatment units will have stories of where the power really lies in their home.

Stories like these make me realise how lucky Steven is. Tonight we’re going to see a Queen tribute band. Because he employs his own staff, he hasn’t got to worry about not having enough staff on duty to enable him to go. He hasn’t got to leave the concert early for a shift handover. If he wanted to, he could invite Freddie Mercury back for a late night drink without fear of breaking the house rules. A normal life of a twenty something.

Others are not so lucky. Their home is in A home. That’s a very different kettle of fish.

Independenceonly happens if it fits in with the service.

Tenacious & Squatty

On Monday I gave an interview to the British Association of Social Workers. They wanted a human rights angle to include in their magazine in December to celebrate International Human Rights Day. I really liked the interviewer and he seemed to fully get my repeated insistence that for me, human rights only exist in the “small places”. All the little things in Steven’s life like popping out to buy a pie or choosing his daily DVD viewing wouldn’t be possible without his right to liberty and his right to a private & family life.

At one point during the interview, the interviewer described me as “tenacious” and I experienced a strong emotional reaction. After he left, I even had a little weep over the word. It was only later in the evening that I remembered why. I’ve got an old press cutting from the mid 1950s about my Dad. He was an above average non league player. He used to play inside right and was blessed with a blistering turn of speed. In the Gazette report he is described as “the tenacious Neary”. I’m very like my Dad in lots of ways and so unlike him in many others but I guess that throwaway comment from the journalist got me because it made a connection that I think my Dad would have liked.

The tenacious Neary became a bit of a nickname for my Dad for a while. Slightly sending up but with a great deal of love and respect for him. I can hear my Mum saying to him, “Oi Tenacious. When are you going to mow the back lawn?”

As a kid (and for much longer after) I always wanted a nickname. Most of my mates had one but I could never get one that stuck. Nicknames tend to be appointed by others: you can’t give yourself one and my circle seemed happy with me being Mark. It took me 45 years to get a nickname. Another thing me and my Dad had in common is that we both had our physical strength in our legs. He was quite trim above the waist but had the most enormous quads. They housed the power that propelled his speed and his tenacity. I never had the speed but I had the power. At the gym, I could do deep squats with pretty heavy weights. And that’s where my nickname came from. One morning, I was in the middle of a set of squats and a guy walked in and said, “Hey. It’s Squatty, putting us all to shame”. And the name stuck. For the next few years, in the gym at least, I became Squatty.

Assumptions. Back to the interview. The interviewer told me that his Communications Director wasn’t sure about doing the interview because, given my history, it might turn into “social worker bashing”. Correct me if I’m wrong but I don’t think I do social worker bashing. I bash Steven’s 2010 social worker but she deserves it. I think I’ve made some good online friends with social workers. It was an unfair assumption.

After the interview, and still a bit cheesed off over the bashing assumption, I went off to the gym. It was a Legs & Shoulders session. This is my fifth week of being back in the gym and to date I hadn’t done any squats. This is partly because I know I’m approaching hip replacement material and I’m not sure my hips are up to such a pounding. But moreover, it’s pride. Squatty’s squatting heyday is over and that’s a rather bitter pill to swallow. Foolishly I also didn’t want a public showing of Squatty’s demise. Another stupid assumption. I wrote before that, at 58, I’m invisible in the gym. It’s a different gym and nobody knows Squatty anyway. So ignoring the audience that only exists in my head, I loaded some piddling plates onto the bar and squatted for the first time since 2012. A bit less vanity and a bit more tenacity.

I remember a conversation with my Dad a few months before he died. He’d been out for a lunchtime drink with his partner and on the walk home, someone came up behind them and snatched her handbag. Instinctively my Dad set off in chase. Tenacious to the last but at 63, his speed had gone and the robber got away. He was cowed as he told me the story. Cowed by the deepest shame. It was very sad and no words could make it right for him.

I didn’t really get it at the time but I do now. It goes beyond pride. It’s a part of our identity. Part of our self belief. It may be built on ever shifting sands but it’s part of who we are. My Dad was Tenacious to the very end – just not in a way that he recognised of himself.

And Squatty will exist, long after I can no longer touch the floor with my arse as I complete my third set of squats.

Glasses Raised For Anna Raccoon

This morning I came across the sad news that the prolific and inspirational blogger, Anna Raccoon, passed away in August.

Anna was diagnosed with a rare form of soft tissue cancer six years ago and was given a prognosis of one year to live. True to her ballsy character, she stretched that out for another five.

I first encountered Anna during the Get Steven Home campaign back in 2010. A supporter of the campaign had alerted her to our fight and she emailed me one day in October asking for a chat. We spoke for the first time the following day. She explained that earlier in her career she had worked for the Office of the Public Guardian and one of the reasons she had started her blog was her frustration at the lack of transparency in the Court of Protection. She had been looking for a case to write about for a very long time and as I had already made our battle public, she thought we might be just the case she had been looking for. I guess we met at a mutually convenient time for both of us. That day, I spoke to Anna on the phone for over three hours. I hadn’t laughed much in the previous ten months but she had me creased up with her hilarious stories of life as a court visitor. I knew I had found an angel. A thoroughly politically incorrect angel.

Anna published a piece about Steven the next day and continued to follow his story right up to the time of her death. Here is the piece she wrote the day the court judgment was handed down in June 2011:

Unlawfully Detained!

A couple of years later I was, deservedly, on the receiving end of Anna’s ire. It was the time we were made homeless and Anna had read my blog on the matter. She phoned me and promised to fix up an interview with one of the broadsheets. Later that day, I took a phone call from the Sunday Times and they did a very long interview for a double page spread the following weekend. I didn’t really understand the rules of “an exclusive” and when a journalist from the daily Times contacted me to discuss the homelessness, I gave him an interview too. Anna went ballistic. Her hard work and that of the Sunday Times journalists had been for nothing as I had allowed them to be scooped. I felt guilty and worried that I had damaged our relationship. I needn’t have worried. After I posted a Tweet a few months later that Steven had been found a new home, one of the first people who phoned to congratulate me was Anna.

I hadn’t heard from Anna for a couple of years. I heard a rumour about this time last year that her blog had been seriously hacked and years of incredible writing had been lost. Thankfully, her army of supporters came together and managed to restore her formidable output.

Then, back in the Spring, I picked up a voicemail. The voice was breathless and broken and I couldn’t make out a word of the message. On another day I might have ignored the message but something made me return the call. It was about four hours after the original message and early evening. Anna answered the call. She hadn’t long had a shot of ketamine which she’d been prescribed to keep the pain of the spreading cancer at bay. She said that she wouldn’t be able to talk for long, or at least, make much sense for long but wanted to ask me a favour. She then told me the fantastic story that she was intending to stand at the forthcoming election. The issue of how much the NHS put aside from the annual budget (over 50%) to deal with legal claims had gotten her going and that was what she was going to fight the seat on. By now, Anna was paralysed from the chest down and would be campaigning from her bed at her beautiful Norfolk cottage that she’d returned home from France to. She found it hysterical that she was “standing” for parliament in her current horizontal position and as usual, the phone conversation was full of belly laughs. I promised to help her but such was her legion of supporters that by the time I phoned her back two days later having accomplished my mission, another friend had already sorted her problem out.

That was the last time we spoke. She continued on Twitter after the election under the brilliant title “Not Dead Yet”. She eventually passed away in August. With her family. In her beloved cottage.

I made a photo album for Steven a couple of years back entitled “People That Saved Steven Neary’s Life”. Anna was on page two (just after Justice Jackson).

I’m going to miss you, old friend.

The blogging world has a huge hole in it now.

There are lots of photos around of Anna in her last few weeks in her hospital bed that were used for her election campaign. I quite like this one that was taken  45 years earlier when she was 23:

Anna Raccoon

Rest easy Ms Raccoon.


Talking Sense

I don’t normally do plugs on this blog. Well, apart from plugs for my own shit and there’s plenty of that sort of plugging on here.

I’ve started to follow the most amazing podcasts. They are the work of Tom Ryan (Connor Sparrowhawk’s younger brother) and a couple of his mates.

I’m slightly uncomfortable writing too much about them for fear of coming across as patronising old geezer.

However, I get invited to many professional conferences and the clarity of thought and the uncorrupted language in these podcasts blows any “professional” conference debate off the pitch.

So, if you want to get inspired and get your brain juices flowing, put the kettle on, dig out the Jaffa Cakes and listen to three spot on dudes hanging out.