I want to introduce you to Jason.

Jason was a man in his forties and had autism and learning disabilities who died after inserting some batteries up his nose last year. He died in hospital following an operation to remove the batteries. At the time of his death he was detained in an assessment and treatment unit run by the Huntercombe Group.

And that’s about as much as I know about Jason. You see, the powers that be don’t want the world to know about Jason. His death was originally attempted to be put down to “natural causes”. The BBC notified the CQC of Jason’s death, although in fairness, it also appears that Huntercombe did a referral. We don’t know whether there will be an inquest. We don’t know the outcome of any investigation (even if there was one). What we do know is that life at Cedar House goes on and soon after Jason’s death, the 40 bed unit was back up to full capacity again.

I’m ashamed to say that I’d forgotten about Jason. It was a tweet from BBC’s Jayne McCubbin that reminded me of him this morning. The CQC today published their latest inspection report of Cedar House and the service has now diminished to an overall “Requires improvement” rating. It failed two of the inspection categories: Safety and Caring. Basically, it has got worse since Jason died.

The inspection covers the period shortly after Jason’s death. The full report is here. It is a long and grim read but an important one:


Jayne’s tweet expressed her shock that there was no mention of Jason directly in the report. He may have been included in this paragraph:

“The provider reported eight serious incidents requiring investigation in the 12 months prior to October 2017. These involved three incidents of patients swallowing batteries, two incidents of aggression, two incidents of self harm and one allegation of sexual assault. The provider has carried out investigations to establish the root cause of the incidents”.

Or perhaps, it is Jason that is being talked about here:

“We identified one incident where a patient, who ultimately required admission to a general hospital, was not seen by an appropriate trained member of staff in a timely manner, causing a delay of two days”.

We have sunk so low in our attitude towards the deaths of people with learning disabilities that walking around with batteries lodged inside you for two days because nobody bothered seeking treatment barely causes a ripple. In the CQC report it gets the same tone, the same bland language as it might assign to a problem with the tumble drier  in the laundry room. Sara Ryan got it spot on when she said that a learning disability diagnosis is now a life limiting condition.

I think it’s fair to say that Huntercombe has quite a reputation for very long detentions in their units. 5 years plus is very common. I know some of the families who have sons and daughters in their units. You probably do too. Most people will have heard of Stephanie Bincliffe and Mia Titheridge who both died shocking deaths whilst in the “care” of Huntercombe.

I can’t imagine what it must be like for the families reading today’s CQC report. Already facing relentless blocking of discharge, the report throws up fresh layers of terror. To know that your loved one is being held in a place that has failed at being safe and caring must be so frightening. For most families, with expectations at rock bottom, the hope you cling to is that your family member will be safe and cared for. Cedar House pisses all over those most basic of hopes.

If you get beyond that awfulness, then you scour the report for clues about the sort of life your loved one will be living at Cedar House. I’ve read the whole report and my heart breaks. The lives lived are so barren. Lots of paragraphs about seclusion rooms, medication protocols, the Mental Capacity Act but nothing about the normal stuff of living a life. I challenge anyone to read the report and to try and get a sense of what Jason’s daily life might have been like. It must have been utterly grim.

Jason mate. There are some good people out there. And they will try to make sure you get the respect in death that you were so callously denied in life.



Agents of Disruption

Today I saw a tweet advertising the latest NHS leadership, innovation stuff. Here it is. It’s calling on its leaders to be Agents of Disruption:

Agents of Disruption

No, I don’t understand a word of it either.

If you saw an advert for a film called “Agents of Disruption” you’d expect it to be starring Jason Statham. he would whip his shirt off gratuitously in most scenes whilst sorting out several men who sweat too much and have decidedly dodgy accents. You know what you’re getting with Jason.

I suspect you could scour the entire ballroom at an HSJ awards do and not find a single Jason Statham. Their idea of disruption might be ordering the duck and cancelling it for the lamb shank at the last minute.

The poster tells us that before we can become agents of disruption, we must first be prepared to disrupt ourselves. I’ve been trying that all day. I had my tuna on white toast instead of brown. I put my underpants on inside out. I listened to Roger Whittaker. None of it quite worked. I was unable to disrupt myself to any unsettling level.

What irks me about these silly bloody schemes are that they’re dreamed up by shiny, smiley people. Disruption is just not in there genes. Except that it is and they can be terribly disruptive. Whilst all the leaders at NHS England sit down to run their latest FAB innovation up the flagpole, just imagine if they considered the absolute disruption they’ve caused to the lives of so many people by burying the LeDeR report. Four weeks on since it was sneaked out, I know so many people that are still struggling to come to terms with the fact that learning disabled people die on average, 25 years earlier than their non disabled peers. That must be the ultimate disruption – dying 25 years before “your time”.

But there are two worlds. The world of agents of disruption and the world of the LeDeR report and never the twain shall meet. One is playing (although they will claim they are being deadly serious) and the other has to be ignored because it doesn’t sit well with the game.

I’ll end with a “hoist Mark by his own petard” story. Reading the disruption crap this morning, I realised that it was 40 years ago today that I set out with some mates, intent on causing some disruption on the beach at Brighton. In fairness, I did start out on the beach but it got a bit lary very quickly and a group of us retired to a Seafront cafe. We did take over the cafeteria and monopolized the jukebox but it hardly matched the mayhem that was going on outside. I did disrupt the loved up young couple by taking the mickey out of them for putting Boney M on the jukebox but that was about it. I didn’t want to ruin the cut of my two tone suit.

Perhaps there’s a lesson in all of this. Perhaps I’m no Jason Statham and am more suited to a slightly refined disruption agency.


The National Bridging Forum.

“Good morning. My name is Dame Deidre Trussell and it’s a sincere pleasure to be addressing such an august audience here today at the National Bridging Forum for Heroic Leadership in Social Care. Since receiving my damehood in 2016 for service to the advancement of epic innovation I have been called upon to talk about the groundbreaking success I initiated at Newport Pagnellshire, namely, empowering all 2600 learning disabled people in the borough to independently relocate to Gravesend, Australia. Commentators have described the programme as the perfect marriage between service user self enablement and effective budgetary management.

But I’m blowing my own trumpet and that is the first rule of the Trussell Leadership Majestum that I want you to take away and embed into your practice forthwith. Don’t be afraid to blow. Blow with pride and gusto. Blow from the rooftops of the world. The best leaders are at their best when blowing.

Rule two. I spit on Bonnie Tyler. Don’t hold out for a hero. Be a hero. You will grow into that cape and those leiderhausen. Stride. To quote another 80s songstress – Strike a pose. Vogue yourself into a hero. You’ll demand instant respect.

Rule three. Listen. Listen with your eyes. In fact, listen with every organ of your body. When our next speaker, Mr Milliband speaks, I will be listening to him with my toes. All ten of them. The people you lead want to be heard. Afford them the honour of opening up your audio glands and really hear their message.

Don’t make the service about the service user. This is a simple trap that many fall into. Yes, you are leadership champions in a service industry but make your customers work for you. Never attempt to meet their needs until your needs are met first. Here I disagree with my old darts partner, Jimmy Munby. The State may be the servant and not the master on paper but we live in paperless times. Master mastery. It will serve you well.

Rule five. Charisma Co-production. Join forces. Hold hands with your peers. Never shy away from putting your head together with an old leadership adversary. Picture your charisma champion and be that person. Mine is a combination of Isambard Kingdom Brunel and Anne Diamond. The perfect alignment.

Finally (and I can see Mr Milliband getting his Powerpoint out) the concluding rule was inspired by Nadia from Bake Off. What are the finest ingredients for a fruity Bridging Leadership sponge? This one is begging for an acronym so I’ll leave you with seven words. The seven ingredients to a succulent leader’s pattisserie:

Innovationalism. Modernistry. Artistry. Communicatable. Unrelentlessness. Newism. Trailblazery.

I thank you”.

Rightful Lives

This is a call to arms. It’s a klaxon call to all potential social care ninjas. It’s an emergency call to the Human Rights batphone. We need your input.

A few weeks ago I wrote a blog calling for a reframing of the social care narrative to be about the human rights of people with autism and/or learning disabilities. Most discourse around social care overlooks the human rights act completely. Look at most care plans; look at the media reporting of social care stories; even look at court judgements where a person with learning disabilities is at the heart of the case – the human rights act is barely mentioned. Since writing the blog, there has been two major new stories: Danny Tozer’s inquest after he died in a Mencap supported living facility and the NHS England’s commissioned LeDeR report into the deaths of people with learning disabilities. I’ve read many reports on both events and cannot find a single mention of human rights. Danny’s human rights counted for little both in his life and his death, whilst the LeDeR review is dripping with human rights violations but they don’t warrant a mention.

The blog seemed to strike a chord and two actions have happened since. Firstly, Alicia Wood and myself went to a meeting with Liberty and the Equality & Human Rights Commission (EHRC). One of the outcomes is that their legal teams are currently looking into bringing a group action for human rights abuses either against a commissioning body or a provider. Getting a judge to examine such a case and to deliver a ruling could go a long way in shifting the narrative and would send a very strong message that the law cannot be ignored just because the person has a learning disability and/or autism.

The second action, and this is where you come in, resulted from a meeting last week of families and concerned professionals. We decided to hold a event that will focus solely on the human rights of people with autism and/or learning disabilities. The vehicle for this will be an online exhibition which will be held for a week from Monday 24th September and will be called “Rightful Lives”.

The exhibition will have a number of themed rooms, each based on a specific article from the Human Rights Act, which appear to us where obvious violations are taking place. These will be:

  • Article 2 Room – The right to life.
  • Article 3 Room – The right to freedom from torture and degrading or inhumane treatment.
  • Article 5 Room – The right to liberty.
  • Article 8 Room – The right to a private and family life.

There will also be rooms covering Protocol 1 Article 2 – The right to education and a room that shows how positive a person’s life can be when their human rights are respected.

We need your creative input to build the content of the exhibition. We don’t want to be too prescriptive about content because we are open to any suggestion. However, some obvious suggestions so far include: photos, stories, artwork, films, recordings, craftwork, media content, blogs… Another suggestion is to have a section that includes correspondence from the State that demonstrate disregard of the HRA. There is already plenty of material out there on social media, so we may contact you for permission to include already published material. We also want contributions from everyone working in social care – social workers, academics, psychiatrists, AMHPs, lawyers, commentators, care workers, providers, commissioners, charities, anyone with experience of working with people with learning disabilities. We just ask that you put your creative thinking caps on and consider what your contribution to the Rightful Lives exhibition can be.

Needless to say that we want lots of contributions from people with autism and/or learning disabilities. We’ve already received some cracking content but we would really like more.

To submit content for the exhibition, please email us at – exhibition@rightfullives.net . We will send you a link to a Dropbox to upload your content and a consent form.

You can follow the progress of the exhibition on Twitter at @RightfulLives or the hashtag #RightfulLives or on Facebook at #RightfulLives.

We appreciate that in trying to shift the focus to the human rights act is a gamble. It may work; it may not. But we are determined to give this everything we’ve got and would love as many people as possible to respond to this call to arms. It’s worth a try.

Over to you Ninjas…..

Death Duties

It’s been over a week since NHS England snuck out their LeDeR report and I’m still consumed by the horrifying statistics it revealed. In my darkest moments, I find myself echoing Kenneth Williams’s last words – “Oh, what’s the bloody point”. The utter powerlessness I find unbearable.

This time last year, I fell into an existential void. It lasted all the summer and I only started to emerge from it towards the end of September. It wasn’t depression. It was too Schopenhauer for that. I carried on doing my usual stuff but spent an inordinate amount of time going back to bed. To sleep. To eat. In hindsight I can see that it was a collection of things that triggered the void. Steven was needing less of me. It challenged the theory that I’ve had for the last 20 odd years that I’ll be Steven’s hands on, 24/7 carer until the day I die. I also published my book: a diary of 2016 & I’d realised that I wouldn’t be writing anything like that again.

But the biggest tipping point into the void was that I’d finally completed my “death plan”. It took months of emotional upheaval trying to assemble a document (100+ pages) that would ensure Steven could carry on living his life as he’d want to, after my death. It wasn’t a totally bad experience. I’m a geek who loves a list, so compiling lists of Steven’s favourite cover versions held a warped pleasure to my anal mind. It was only on completion of the plan that the sheer futility of the exercise hit me. I can rally the troops. I have rallied the troops. But at the end of the day, Steven’s future will determined by a social care professional conducting a best interests assessment and my plan may not be worth the paper it’s written on. After all, nobody is going to listen to Steven and his ideas on how he wants to live his life.

Anyway, it was a combination of all these things that led to the void opening up and this week, I could sense it reopening with an impending sense of doom. I woke up one morning having done some maths in my sleep. If Steven is going to die 25 years early and before he hits 50 (even though he may not be ill) then I will have to live until I’m 81 so that I can bury him. So that I can prevent my death plan ending up in some social worker’s confidential waste bin. The irony is that at the moment Steven receives excellent care and he may buck the LeDeR trend. He’s living a good life that could end abruptly, long before he dies if his current carers, myself included, aren’t around to ensure he lives. His future is as fragile and random as that.

All week long I’ve been having conversations about death. But those same conversations are about living too. I had a discussion with my brother in law who’s had a recent health scare and he remarked how infrequently he visits his doctor. I’m the same. I’m 59 and I’ve only recently had my second over 50s annual health check. It doesn’t occur to me unless I’m feeling unwell. I think it’s my upbringing and my class. Doctors were seen as very important and their time must be wasted on trivial ailments. Should I be more proactive about Steven’s health? About mine? The other day I had a conversation with two guys at the gym about their use of steroids. They were fully aware of the health risks but felt they were manageable. I found myself being surprisingly non judgemental. They were living their lives. You can’t knock that. Then I had a session with a client who is 74 and he announced he’s lost over a stone in weight in just over a month. The fear was there but then he talked about all the meals he’s been skipping whilst he’s been climbing trees, erecting a summer house in his garden. As the session progressed, the death fear didn’t dissipate but the room was full of the sound of him living.

This is all very random but that is where my head has been over the last seven days. I was introduced to death fairly early on. My mother died when I was 16 and a year later one of my closest classmates died of a brain haemorrhage. Events like those tend to focus the mind and set something up for life. I even had a short lived phase in my early 20s where we would have Joy Division parties and sit around predicting our own deaths. The LeDeR report has taken me to a familiar place but it carries a bleakness that feels very new. And at the moment, insurmountable.

Steven lives. He hasn’t “had his time” yet. Whilst I was chatting to Wayne about cancer fears, Steven was having a shit in the toilet. He was singing The Proclaimers, “I’m On My Way” at the top of his voice. I think he truly believes that he’ll have Al Jolson sing, “I’m sitting on top of the world”.

And that thought has me laughing out loud, bursting with love and sobbing my soul out.

The LeDeR of the Gang

Yesterday NHS England published it’s report into the deaths of people with learning disabilities. It was commissioned following the Mazars report that looked into the premature, preventable deaths of people with learning disabilities whilst in the care of Southern Health Foundation Trust. None of this would have happened without the tenacity of Sara Ryan and the Justice for LB campaign.

NHS England don’t want anyone to see the report. They held back publication until 8am yesterday, the day after the local elections and the day before a long bank holiday. They refused to arrange a press conference and refused to put anyone up for the BBC and other media interviews. The report is only 36 hours old but already the link to the content on the HQIP (No, I don’t know who they are either) website has changed at least twice. I’ve posted the current link below but it will probably change again:

The Learning Disabilities Mortality Review Annual Report 2017

You will have noticed if you’ve clicked on the link that you have to give your personal details before you can download a copy!

The headlines of the report are grimmer than grim:

Women with learning disabilities are likely to die 28 years earlier than their non disabled peers. Men with learning disabilities are likely to die 23 years earlier than non disabled men.

1131 deaths were referred to the programme but lack of resources meant that only 103 of those deaths were reviewed. There is no timescale as to when the other 1028 deaths will be investigated or those that will be referred after the reports publication.

Of the 103 reviews, 13% of deaths were found by the review team to be down to:

  1. Neglect or abuse.
  2. Organisational dysfunction.
  3. Delays in care or treatment.
  4. Gaps in service provision.

Anyone who has followed the inquests into the deaths of Danny Tozer, Oliver McGowan, Connor Sparrowhawk & Richard Handley won’t be surprised by these revelations. The data is profoundly shocking but the apathy of the State and the service providers and the lack of care on offer runs through the inquest evidence like chilling veins.

The 103 reviews have highlighted three areas for learning:

1.Inter-agency collaboration and communication.
2.Awareness of the needs of people with learning disabilities
3.The understanding and application of the Mental Capacity Act (MCA).

No shit Sherlock. Anyone from the widest periphery of the social care world could have identified those three areas. And am I the only one who finds the “awareness” item really offensive. We need to be aware of potholes in roads, lumps in our testicles. Do we really need to be reminded to be aware of other human beings?

Sara Ryan appeared on the BBC Breakfast sofa and shook the truth stick at Charlie and Naga with a righteous ferocity. She gave us the most distressing but powerful and truthful statement of the day: “Anyone who is classified as having a learning disability must now be seen as having a life limiting condition. They are not sick”.

The contemptuous behaviour of NHS England since yesterday validates the truth that Sara uttered. They do not care. The State and its laws do not touch learning disabled people. They are less than human so shouldn’t expect humanity.

It took me several attempts to read the LeDeR report. I got 2/3rds of the way through and had this overwhelming desire to give Steven a hug. I don’t normally see him on Fridays, so he was a bit startled when I turned up, interrupting his Men Behaving Badly marathon. I thought about his diagnosis of a nonalcoholic steatohepatitis liver three years ago and the complete disinterest of most of the professionals to this life threatening condition. (“Would you like another referral to the dietician?”) Medication given to keep him quiet and stop him singing when he was in the Unit caused a 15 stone weight gain. He nearly died and isn’t out of the woods yet.

One last horror thought hit me last night. I was listening to some music and the Blur track, Country House came on. It took me back to the year it was released, 1995, the year Steven came to live with us. Then, Bang. 23 years ago. Everything that has happened in our lives since Country House never happened.

It couldn’t have done. We are learning disabled.

We are dead.



Why MCA?

My apologies but an old familiar bee has been buzzing in my bonnet again. I know I’ve turned into one of the great bores of England on the subject but it’s a pesky bee and I don’t want to get stung. What is the bloody point of the Mental Capacity Act?

Commentators always talk about the MCA being a great piece of legislation. They focus on its aspirational qualities. Words like “empowering”, “liberating” and “human rights based” are common adjectives applied to the Act. I agree that on paper, the MCA looks like it encapsulates all those positives but what price those positives if they remain on paper and are seldom translated into people’s reality?

My bee became reactivated during Danny Tozer’s inquest. The inquest was a two week examination into how Danny came to die in a Mencap supported living facility. All the evidence revealed that Danny didn’t live an empowered life. There was nothing liberating about life in this Mencap warehouse. It was a regime that was service led. Apathy ruled. It took an external consultant to remind the staff that they needed to show “kindness” and “interest” in the residents. The Mental Capacity Act doesn’t even get a foot in the door in these types of regimes.

During the inquest, the Mental Capacity Act was mentioned just once. Totally staged and used by Mencap’s barrister to fit his narrative for the fortnight – whatever happened, it was always somebody else to blame. Clearly coached, the Mencap witnesses either suffered the most alarming case of mass amnesia (the York outbreak) or they woefully attempted to shift the spotlight elsewhere. In the solitary mention of the MCA, the barrister asked one of the Mencap managers whether they had considered the deprivation of liberty safeguards. The manager responded that it was the responsibility of the City of York council.

Screech. No it’s not. Mencap were the managing authority. The deprivation was taking place in a Mencap home. It was down to Mencap to start the DoLS ball rolling. And that was that. The MCA’s sole appearance of the fortnight. In the cast list of the inquest, the MCA appears just below “man in hat at petrol station”. The barrister and the manager were playing a clearly rehearsed game. They were pissing all over Danny and the legislation to serve their own ends. What was just as shocking was that nobody else picked them up on it. None of the other barristers challenged their presentation. The coroner didn’t interject with “Hang about Joseph. You’ve got that a bit arse about face”. I don’t believe they were all playing a game. It was simply a display of total ignorance. The key, empowering legislation a complete irrelevance to Danny’s life and death.

If the MCA made a single solitary appearance, the Human Rights Act didn’t get a look in at all. We shouldn’t be surprised at this omission. To Mencap, Danny wasn’t seen as human so his human rights are unlikely to figure in his care arrangements. But we’re in a very grim place when the two foundation stones for a learning disabled person’s life are transparently missing. The law doesn’t feature at all for all the people tasked with giving Danny a fulfilling, meaningful life. How can this be? Is there any other area of law that is so routinely ignored? Is there any other group of citizens where the law has so little impact on their life?

As the inquest reached its conclusion, I found myself discussing these concerns with a leading human rights activist. He reminded me that, seven years on, Steven’s case is still the only published judgment that brings together the Mental Capacity Act and the Human Rights Act to really serve the citizen. I find that dearth of cases really shameful. I also get very embarrassed when Steven’s case is called a “landmark case”. For me, a landmark case opens doors for others to follow. Steven’s case opened the door for a nanusecond and then was slammed shut and bolted the minute he walked through. That’s not a cause for celebration.

I was told that Steven’s case represents “hope”. I’m afraid that’s a bit too random for me. We need more than hope. We have more than hope – we have legislation, albeit nobody is interested in it. I still hold out hope for the Human Rights Act. There’s a whisper that there may be another 7 Days of Action campaign soon and my hopeful wish for any campaign is that the narrative can shift and we start seeing the human. With rights.

But we haven’t got long. We’re living in pretty bitter, intolerant times and post Brexit it’s probably going to get nastier. Already hostile environments will become more hostile and the learning disabled are convenient Aunt Sallys for that hostility.

I’m just not sure whether the MCA has any traction in that sort of world.