Week 4: Deaf Ears and Force Majeure #107days

Week 4 has received a huge reaction so far on social media, it seems the issue of listening or non-listening (to families, parents, disabled people) touches a nerve for many of us. This week started with Katherine’s thoughts on Motherblame, followed by Sara’s on why it happens The moon on a stick? Today Mark Neary has kindly offered his perspective:

Deaf Ears & Force Majeure

Since being asked to write this post for the Listening to Families week of #107days Take two, I’ve been thinking back over the seven years since Steven was transitioned into adult services. It makes my heart sink to think that in that time, Steven has been barely listened to by the care professionals. If I think if I have been listened to, it registers on the scale slightly lower than barely.

In 2010, Steven spent the whole year in an ATU. Speaking his wishes never got him anywhere, so he took to singing his desire to come back home and greeted the ATU manager every morning with ‘I Want To Break Free’. At the time, I felt I was being humoured. But when we got hold of the social care records, I found it was much worse, the professionals were openly hostile to my input into Steven’s care. Don’t take my word for it. In 2011, Justice Peter Jackson ruled that Steven’s Article 5 & 8 ECHR Human Rights had been breached and this is what he had to say on the subject of listening to the family:

It (Hillingdon) acted as if it had the right to make decisions about Steven, and by a combination of turning a deaf ear and force majeure, it tried to wear down Mr Neary’s resistance, stretching its relationship with him almost to breaking point. It relied upon him coming to see things its way, even though, as events have proved, he was right and it was wrong.

And later in the judgement:

Regrettably, once Mr Neary’s initial resistance to its plans weakened and fell away, Hillingdon appears to have taken a dim view of his concerns. In an e-mail dated 22 February from the social worker to the support unit, the following appears: “There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven’s. I know that it seems that you as a team are constantly being questioned but this will be the case because Mr Neary wants to find issues with the care that other people give Steven. We just need to ensure like we have that we are working together for the best outcome for Steven.” It is now accepted by Hillingdon that Mr Neary had done nothing to deserve this disrespect. The unfortunate tone of the message demonstrates that even at this stage the expression “working together” did not include working together with Steven’s father in the true sense and that Hillingdon’s thinking had by this stage become adversarial. Worse, the professional view was withheld from Mr Neary, perhaps because revealing it would have provoked a renewed challenge.

And in his final summing up:

Hillingdon’s approach was calculated to prevent proper scrutiny of the situation it had created. In the weeks after Steven’s admission, it successfully overbore Mr Neary’s opposition. It did not seriously listen to his objections and the suggestion that it might withdraw its support for Steven at home was always likely to have a chilling effect. Once Mr Neary’s resistance was tamed, the question of whether Steven was in the right place did not come under any balanced assessment.

The big question is why? Our story is not unique. Why do professionals take such a combative stance when straight forward dialogue and listening to the family experience ought to be so valuable?

I think Sara hit the nail on the head yesterday and it comes back to the person being seen as not really human. So, by default, the person’s family occupies a strange space in the official framing, whereby they are not seen as like other families. It doesn’t matter how you present, what your life experience is, you are forced into a lesser than box.

I’ve obviously thought about this many times since the court case and I believe that the main reason why families are side-lined are because they have to be.

Social care is built on several building blocks of illusions. The illusion of the social care world couldn’t sustain itself if the family’s reality was heard and attended to. To maintain the illusion the family has to be ignored or attacked. At home, we get very few incidents of challenging behaviour with Steven; at the ATU, they were recording up to 30 per week. So, to protect the illusion that the professionals knew best and that the Unit was the best place for him, the attacks on me started; they believed I didn’t report honestly. They believed that I wouldn’t continue with behaviour management programmes. And we move into very dangerous territory if I dared to suggest that, actually, I didn’t need a behaviour management programme.

It must be awful, going into work each day, terrified that at any moment, you might fall into the king’s new clothes abyss. Once at a meeting, I laughed. It was spontaneous. I certainly didn’t mean to do it. The terror in the room was palpable. The abyss opened. I think Steven and I paid quite a high price for nearly exposing the void.

As part of the group trying to make #LBBill become a reality, I get scared. Empowering legislation like the Human Rights Act, The Mental Capacity Act often seems to have the adverse effect. Having rights involves listening to families. It also involves giving some power away. That’s an almighty shift and one that seems a very long way away.

StevenN

Day 80: Busking for Justice #107days

Day 80 was adopted by John, variously known as Busker John or Kid Rage! John’s piece is one of two this weekend that offer a personal perspective from people who knew LB, and the lasting impact he has had on them. Here’s what John had to say:

So many of the contributors to 107 Days are so experienced and knowledgeable about learning disabilities and autism. I would like to add something about ignorance. I met Connor in 2007 and was, like most young people who didn’t know anyone like Connor, pretty ignorant about his experience or other young dudes like him. I learnt a lot within five minutes of meeting him; he liked asking questions, he had a sharp sense of humour and knew where my nearest coach company was. I didn’t know how to speak with Connor, (as if there was a way to do so that was different to anyone else). I was not wilfully ignorant, but had considered very little about people with learning disabilities due to having so little to go on. There’s very little air-time for people like Connor or their relatives. When there is, it’s usually about something terrible happening.

Due to a change in jobs two years ago I’ve learnt a fair bit about services for people with learning disabilities. I’ve learnt a lot from reading Sara’s blogging, and more recently other people’s. Among other things, the Justice for LB campaign sheds light on a health and social care system that revolves around the rhetoric of person centred care. From all these contributions and what I have seen myself, the system is not always good at hearing and more importantly considering the voices of people who are very vulnerable, or those who know and love them. I’ve seen how this allows ignorance to exist where people who are ‘voiceless’ need empathy and understanding in order to make sure they are looked after, safe and feel safe. If a dent is made in that ignorance due to 107 days then that’s one success.

I am proud to say I did know and learn from Connor…. we made each other laugh on a few occasions. The last time I saw Connor he had some more questions for me and we’d just had a big breakfast in Headington. A good last memory!

Day80_Busker John

Last week I busked for a while in Oxford.

[youtube http://youtu.be/HJwFI-EFZ6o]

I played some songs which Connor and his family like and which remind us of him. Apparently I looked a bit angry and gained the stage name ‘Kid Rage’ in time for the gig with The Amazing Geoffrey at Connor’s party on 31 May.

Day80_Party performance

One song I played always makes me think of what Connor’s reaction would have been to a red route-master pulling up outside his house on a hot July day last year. The song is about a young man who stole a car and “drove it like our days had been stolen.”* I think Connor would have wanted to take that bus and ride a long way with his family with no thoughts of the future or consequence.

The lyric that John references above is from ‘Headlong into the Abyss’ by Billy McCarthy, more on that tomorrow….

Day 70: Shadows of action #107days

Day 70 was adopted by Yvonne Newbold who wished to write this blog post to share some of her own personal reflections on LB and Sara’s experience, and the similarities to those of her and her son Toby. This is why Yvonne wanted to get involved:

I’ve never met Sara, nor did I ever meet her son, Connor (LB), yet the shock I felt when I first heard about his preventable death is something that will live with me forever, and which has developed into a searing sense of outrage and anger as I watch the NHS handling of this tragedy unfold.

You see, I also have a severely learning disabled son, who also has severe autism, and I also recently had to entrust his care to others due to my own ill health. His name is Toby and he is 20 years old. There is a real sense of ‘this could have been, or one day might be, our story’. I also know what it’s like to be fobbed off, discredited and abandoned by the NHS as Sara has been since LB’s death, because when you are a parent of a different child, these things seem to happen all the time.

Although I have never met Sara, there is an affinity which exists between parents of children with disabilities, an understanding that transcends normal communication, a sense that we each simply ‘get it’ in a way that the so-called expert professionals very rarely do. To me, LB, Sara, Toby and I, along with every family coping with the issues that disability brings, are all part of the same tribe, a family of sorts. What happens to one of us is personal; it hurts all of us.

This is what she has to say:

Something rather insidious has happened to our society in the past couple of decades since LB and Toby were born, and being a parent of a son who is reliant on the Statutory Services, I’ve watched it spread and become acceptable from a front-row seat.

A culture of fear has taken hold among those working within our health, social care and education services, a fear that paralyses them and prevents them from doing the job for which they are paid; which is to protect and support the most vulnerable members of our society. Instead this culture of fear has turned their priorities upside-down. They now seem to do all they can to protect and support themselves and each other, and maintain the reputation of the organisation they work for.

When organisations have their funding and future survival of services tied to the vagaries of abstract key indicator targets to the extent that we have allowed it to happen, there is a huge vested interested to paper over the cracks, bury any mistake that happens, and create systems that cover their backs rather than reach out to help those in most need. When this trend is also happening alongside a society becoming more litigious year on year, the focus becomes even more self-interested.

They have to keep up appearances make everything seem excellent and tickety-boo, with no room to admit that human errors sometime happen. The people who work in these environments are no longer able to make autonomous decisions; we have all seen the growth of the interminable meetings where even the smallest things are now decided by committee. Joint decisions are always watered down and become half-baked shadows of the actions really needed. No one is able to stick their head up over the parapet anymore and say something sensible, because they are all too scared. Using one’s own initiative is frowned upon but how can you truly care for someone in any meaningful way without being allowed to sometimes think on your feet?

No one takes personal responsibility in these organisations anymore because they aren’t allowed to. Meanwhile young people like LB die, because if no one takes personal responsibility, so no one can apply common sense, and it’s also, of course, no one’s actual fault.

The unspoken mantra is ‘cover our backs, cover our backs, cover our backs’. The staff feel compelled to collude with management to hide any weaknesses or failings. Reputation is king. Any weakness or failing that comes to light is minimised, or side-lined or hidden away. Truths are spun and twisted, any insider who tries to speak out is pilloried as a whistle-blower. If failings cannot be neatly filed away, they sometimes find a scapegoat, and publicly pillory them as well. No wonder the staff are so frightened.

The upshot is that staff bring that fear into every encounter with those in their care. The emphasis changes, again to protect themselves. For every few minutes they spend with those they care for, several more minutes must be spent writing down everything that happened during those two minutes, just in case something ever comes back to bite them on the bum sometime in the future. What they write doesn’t always reflect what did actually happen during those two minutes either; it has to be skewed to fit the text-book version of what would sound best.

So all the reports are written, all the boxes are ticked, and they can produce their swanky glossy brochures telling all and sundry how marvellous their service is. Their backs are turned away from those who really matter and meanwhile LB drowns, and countless others continue to be short-changed.

Our young people deserve better, and things must change for the better, too, and fast. The staff who work for these organisations don’t want to work in a culture of fear anymore either. The vast majority care passionately about making lives better, but their hands are tied by fear.

Mistakes happen, we all know that. When they do, parents like Sara deserve the level of respect that can only come from complete honesty, truth, compassion, empathy and sincere apologies. It is the only acceptable way to behave. Particularly in LB’s case, when that mistake was one that had been waiting to happen for far too long.

As Yvonne says in her post, this mistake had been waiting to happen, but not just that, now it has happened LB’s family and friends are left to raise funds to cover legal costs to bring Justice for LB. So, rather than use an image of LB for this post, I’ve used the party tickets, for the party night happening this weekend, Saturday 31 May and there is still time to get tickets and come along, all support gratefully appreciated.

LBPartyNight

 

Day 40: Musings from the Magic Roundabout #107days

We were delighted when Ermintrude offered to write a blog post for #107days. Day 40 shares her thoughts and musings, and we’ve named the post in honour of her pen name, but also in acknowledgement of the constant sense of being stuck on a merry go round in dealings with Southern Health.

merrygoround

This is what Ermintrude had to say in support of #JusticeforLB:

I wanted to write something to remember and honour LB, his family and people who are in similar situations now. I wanted to rage against systems that allowed this to happen but as I’ve read people’s contributions, I realise I can’t add more honesty than those who have experienced the utter despair and despicable treatment in the hands of health and social care professionals.  So I am just pondering some memories, fitting them together and thinking about what I can do to promote better care and better systems for people who have learning disabilities and for all people who are subject to the vagaries of a disjointed and unempathetic system.  Here is my modest contribution.

When I was at school, we had weekly trips to a local residential home for people with learning disabilities. It was billed as ‘community service’. We could go instead of playing hockey. My aim wasn’t very noble when I volunteered, I have to say. I wasn’t very good at sports. Looking back though, at some of those afternoons, I remember how we didn’t really see an us/them and it became more than a way to avoid hockey. We laughed, we joked, we played silly board games, chatted about music and television and school. It became a fun way to spend the afternoons because we were simply hanging out with people who laughed at our jokes and who we enjoyed being around.

Looking back over the thirty years since then, I wonder whether this was really anything revolutionary we were doing. Or if we just need to stop looking for answers and try and find some of the solutions we have already found but just do them better.  I went to university and dabbled in a little voluntary work with older people. I joined one of those countless ‘societies’ which are on offer which did little jobs around the house for older, isolated people. I pity the poor women (it was mostly women I happened to visit) who had me wallpapering their front rooms for them but in my defence, I think, in return, we always chatted for far longer than we worked. Big society. Right.

And then past university, which is where I’m going to settle a while, I picked up on the voluntary work with CSV and went to spend a year in a residential home (with staff accommodation attached as it was in the middle of nowhere) for adults with learning disabilities and epilepsy.

It is here that I’m going to settle a while because it was where I learnt a lot about epilepsy, learning disabilities and the relationships between the two. Everyone who lived in the home had epilepsy. We were given core training in managing situations, particularly when people had seizures and as a new volunteer, while I was supposed to be doing the ‘fun’ stuff in addition to the staff – like taking people out in the local area, running games groups and discussion groups in the evenings and generally just wandering around ‘being sociable’, a big part of my morning routine was supervising baths.

I remember feeling quite awkward initially about having to watch people having baths. Of course, we did it as subtlely as we could. We had privacy curtains surround the bath with a small gap to observe and often I (as all the staff would – this wasn’t something different I did) we would chatter away to people as they sat in the bath, just making sure there were no long silences or that I didn’t monopolise the conversation too much. Always, we listened out for any splashes. I did have to pull the plug out a few times when people had seizures in the bath (that was the first thing we were to do). And thinking of a man, who drowned in an NHS run hospital where the care and supervision should have been there, I often thought back to those days when we would all be taught, from the very junior people like me how to manage seizures in baths, it makes me angry. That was 20 years ago.

I moved on after that job to work in learning disabilities services for a number of years until I qualified as a social worker and switched to work with older adults but a part of my heart stayed there.

So how have we got to a situation where services exist and an organisation exists which provides them in an NHS healthcare setting where the minimum standards were not met. We aren’t talking good quality care here, we are talking about providing dangerous and neglectful care. Care which contributes to the death of people, to the death of Connor.

There are a number of things which can be put into the basket.

Firstly, poor organisations delivering poor services. This is no excuse. This is not about ‘modern’ or ‘not modern’ ways. I was doing this in 1993. I’m sure there were many problems with the places I worked in but they provided far better care, 20 years ago, than Southern Health manages now. And the CEO talks of ‘not working in a modern way’. I wonder how often she has sat outside a bathroom, listening for someone in a bath and listened if they had any seizure that she would have to act on. I wonder. I wonder how often, and maybe I’m misjudging her, she has sat with the people who receive her services, in the settings and environments which have failed to provide the basics like safe seclusion facilities, like functioning defibrillators and listened. Truly listened.  While there are poor services and these services are allowed to continue to exist without censure, we can’t claim that we have a health service to be proud of. I worked in the NHS for many years. I am proud of the work I did. I’ve come across many many wonderful doctors and nurses but as an organisation, we have to be able to criticise parts without being made to feel we are criticising all. Some parts don’t function.

Secondly, and this is linked, poor oversight and lazy commissioning. Commissioners have a responsibility to check the quality of the services which they are paying for and to hold providers to account. They hold the purse-strings and have to be assured that they are happy with what is being provided. This is not about ‘avoiding scandals’ although I fear sometimes it might be. It is about seeking the best. There seems to be a lack of aspiration around some services for people with learning disabilities and my feeling is that this gap is particularly evident in health-based settings. We can talk Winterbourne endlessly and good work may be being done but we need to see more action and less rhetoric. The commissioning and commissioners are lazy because they don’t scrutinise or challenge.

Thirdly, there is the societal assumptions and expectations for people with learning disabilities. We talk about the watershed of Winterbourne but Connor died in the post-Winterbourne landscape. We talk about people moving nearer home as if that is a cure-all but poor care happens near home too. And not everyone has a home to go back to. I remember some work I did once with a man with profound learning disabilities who had no family. We can’t make assumptions about people having families who will advocate and fight for them. As a society we need to fight as strongly as those families might for those without. We fail miserably here. The expectations and assumptions are set low because there isn’t much thought or consideration for difference. Some organisations say the right words but there are often lazy assumptions made.

So is there scope for change?

I hope so. We have developed a health and social care system which is routed in jargon and exclusion. I worked in health and social care for 20+ years and it confuses me. How can we expect others to understand when we can’t ourselves. We have different funding streams and different funding levels for different things. Some pots are mixed up and some are centrally commissioned, some locally commissioned, some contracted out by provider services. Some are charged and some aren’t. What a mess we have created.  Instead of transformation being what it actually means, it has been tacking on poor systems (such as the extra complicated way that personal budgets have been rolled out) onto poor systems. Where is the complete redesign? The NHS moans and groans about too many changes. No, it’s too many of the wrong kinds of changes. There needs to be change. There needs to be integration but there need to be sensible people driving it. People who experience the services as recipients – not those cozied up to each other in Whitehall and local government/CCG silos chatting to the same people they have done for years and exchanging thoughts over golf in Surrey.

My hope is that we can drive these changes. For LB, and for all who need to have their voices amplified so that things can move on. Because they need to.