Week 6: Ecoutez et repetez #107days

Continuing our week exploring inquiries, today’s post comes from Chris Hatton

When I was a PhD student, the common room in the research centre where I ‘worked’ (yes, there were such things in the olden days) contained an unremarked upon filing cabinet. One idle afternoon (yes, there were such things in the olden days), out of curiosity, I opened it, to find an anti-Narnia of dusty inquiry reports. The rest of the afternoon went as I started reading through them, my shiny, unthinking bubble of an optimistic perpetual present (what history?) gradually deflating and then popping altogether. I consoled myself that this was all in the sepia-toned, bad, institutional past, though, and people with learning disabilities were on the path to a bright and better future (cue heroic socialist realist poster). As a metaphor for the history of inquiries, it’s so perfect as to be completely unconvincing.

Some quotes (and for more from recent inspections of ‘specialist’ services for people with learning disabilities see here):

  1. ‘Our investigation found that institutional abuse was widespread, preventing people from exercising their rights to independence, choice and inclusion. One person spent 16 hours a day tied to their bed or wheelchair, for what staff wrongly believed was for that person’s own protection. One man told investigators that he had never chosen any of the places he had lived as an adult’ Full report
  2. ‘The families of patients at Winterbourne View Hospital had no experience of being regarded as partners, deserving of trust and respect, or even of collaborating with Winterbourne View Hospital staff. Theirexpertise, borne of the lengths to which they had gone to keep their relatives at home and in care services, was not acknowledged by Winterbourne View Hospital. They were excluded from having a full picture of events at the hospital’ Full report
  3. ‘An unduly casual attitude towards sudden death [and] inadequate systems for reporting incidents’ Full report
  4. ‘1991: Allegations of assault. Investigations were made and evidence established, but the Inspector chose not to use the enforcement powers of the Act.
    December 1992 – April 1993: Allegations of multiple abuse. The evidence of abuse increased and the Inspectors accepted that there was a serious case to be answered. But no assessment of the risk to residents was undertaken nor were the police called in to help. Fearing intimidation of staff and residents, the Inspection Unit continued to rely on announced inspection visits.
    1993: Joint Police/Inspection Unit Investigation. There was no common understanding of the strategy to be followed. The Inspection Unit decided to take no action unless and until the Police decided not to prosecute. They failed to assess the evidence as it became available and so suspended their duty to consider whether enforcement action was needed.
    1994: The Inspection Unit Investigation. This was an extremely complex investigation for which the Inspectors had little experience. They did not seek help from the Health Authority, renew contact with the Police or use other specialist sources. Complaints about specific aspects of the care regime were never properly investigated. Social workers, families and the police were given no information about specific allegations.
    1994: Action on the Inspection Unit’s Report. The advice to Social Services Casework Sub-Committee not to take enforcement action under the Registered Homes Act 1984 to cancel the registrations in respect of the homes, as summarised in the final report which was put to the Social Services Sub-committee, did not reflect the professional judgement of the Inspection Unit’ Full report
  5. ‘For long periods of time the hospital buildings were neglected and dangerous. They were a patchwork quilt of makeshift repair and poor workmanship. The roof of the main building let in water for many years and the upper floor often had to be evacuated because rainwater poured in and it was feared that the ceiling would collapse. Patients were sometimes soaked as they slept. Buckets and tin baths littered the upper corridor…The standards of hygiene were often appalling and patients and staff alike suffered from demarcation disputes between nursing and domestic staff. Faeces and urine were frequently left unattended for days on end, with consequent risk to health and welfare of patients and staff’ Full report
  6. ‘Some individuals, as the trust has acknowledged, have suffered abuse including physical, emotional and environmental abuse. The trust’s own investigations at Budock Hospital have shown that some people using its services have had to endure years of abusive practices and some have suffered real injury as a result. For example, one person suffered multiple injuries over time, including a fractured skull after being hit by another person who used the trust’s services. Despite the development of numerous action plans, underlying problems have never been addressed and poor practice has become ingrained within the management of learning disability services and the provision of care’ Full report
  7. ‘There were examples of individual patients in Winterbourne View Hospital and their families being threatened with the improper use of mental health legislation’ Full report
  8. ‘All the male wards are seriously overcrowded. The buildings are old and ill-designed. The standards of amenity fall far short of what would nowadays be expected…The staff establishment [of one ward] is half the minimum desirable…’ Full report
  9. ‘The standard of nursing care was generally extremely low and the quality of life of many of the patients suffered accordingly. Shortage of staff at different levels was at various times a contributory factor, but it was by no means the principal cause of difficulty’ Full report

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A few observations from me. First, as the #JusticeforLB #107days inquiry timeline and Katherine Runswick-Cole’s post make clear, these successive inquiries, serious case reviews, independent investigations and inspections (46 years on from Ely Hospital now, almost as old as me!) have not resulted in the eradication of abuse of people with learning disabilities in ‘care’ services.

Second, these inquiries are clear-sighted about identifying the ‘causes’ of the abuse and poor practice reported time and again, but they generally do not try to get to what Sir Michael Marmot in a public health context calls ‘the causes of the causes’. We know that smoking causes lung cancer, but wouldn’t it be equally important to know why people take up smoking in the first place? These inquiries tell us what seemed to contribute towards abusive practices in each place, but not to address what causes these factors to recur, again and again.

The Utopia of Rules by David Graeber (see a long post on my reading of this here for a detailed expansion of the argument) struck me forcibly as providing part of an answer to this question. One of his central points is that bureaucracies can draw on (and indeed rely on) the threat of real violence for their enforcement. So, is the abuse reported in inquiry after inquiry a logical end-point, or a necessary element, of an intensely inhuman, bureaucratic ‘care’ system?

Is it also possible that the ‘failure’ of inquiries to eliminate abusive practices (and not just in services for people with learning disabilities, as this slideset from Prof Kieran Walshe makes clear) is partly because the recommendations they make are all about tinkering with these inhuman bureaucratic systems rather than seeing them as part of the problem and tackling them head on?

So, where might we go from here? Whenever I see a service really working for a person with learning disabilities, there’s always a person with a strong, human commitment to making whatever they’re doing work better for people, no matter what bureaucratic system they’re enmeshed within. Some people just seem to ‘get it’, and have the energy to bend/break bureaucratic systems to create a bubble of humanity within these systems. Why doesn’t this happen everywhere? I used to think part of the issue of ‘scaling up’ good practice was to design systems better so that good practices in a place could survive the committed person moving on. I now realise this was completely wrong-headed and bureaucratic as a way of thinking. Now I think what we need is to find, nurture and support as many ‘humans’ as we can to start to shake and dissolve the inhumanity of bureaucratic systems. A service needs to start without the bureaucratic threat of violence in its back pocket, for genuine, human relationships of trust to develop.

Sources
1, 6: Joint investigation into the provision of services for people with learning disabilities at Cornwall Partnership NHS Trust, 2006
2, 7: Winterbourne View Serious Case Review, 2012
3, 8: Ely Hospital Inquiry, 1969
4: Independent Longcare Inquiry, 1998
5, 9: Normansfield Hospital Inquiry, 1978

Week 6: Do we need another inquiry? #107days

Here in the Justice Shed we’re quite responsive and organic in our approach to campaigning (which really means we aren’t amazingly good at forward planning and fly by the seat of our pants a little), one of the advantages of this is that we can respond to issues as they emerge. A tweet from Katherine Runswick-Cole and a blogpost from Chris Hatton stopped us in our tracks this week, and we decided to embrace the discomfort of them and make Week 6: Do we need another inquiry? week!

Screenshot 2015-04-29 11.35.53

A potted history of inquiries into abuse and mistreatment of learning disabled people in the UK follows:

1967, Ely Hospital Wales:

Conditions at Ely Hospital came to the attention of the world through the pages of the News of the World. It reported allegations of ill treatment of patients and pilfering by staff. The allegations were made by a nursing assistant at the hospital… The public outrage which followed led to the setting up a committee of inquiry…It was Howe who insisted the inquiry should go far beyond the events at Ely itself, to look at the whole system and the way in which people with learning difficulties – “mental handicap”, as it was known at the time – were treated within the 20-year-old NHS.

Nationally, the impact of events at Ely was profound. From this time onwards, the momentum to close the long-stay hospitals and to resettle patients in the community gathered unstoppable pace.

It wasn’t until 1996 that Ely eventually closed, a mere 29 years after the horrors first became known about.

Fast forward to 2007 and an almost identical scenario was uncovered at Orchard Hill Hospital in the London Borough of Sutton. Yet it took a further two years before, in 2009, Orchard Hill eventually closed, and even then some residents remained on site in bungalows awaiting purpose built community accommodation. Forty two years after Ely.

In between times, there were ‘scandals’ of abuse uncovered in Longcare in 1994 and Budock Hospital in Cornwall in 2006.

In recent times we have the Panorama uncovered abuse at Winterbourne View in 2011. At this stage we can take a look at a timeline that Sara put together to situate what happened to LB, within the ‘national outcry’ post-Winterbourne:

Sara_revised-timeline

The ‘post-Winterbourne’ era is marked by what can only be described as an apathy, everything is too hard or too complex. Everyone merrily talks about the shock and shame, hands are wrung up and down the country, and while some individuals and organisations work their socks off trying to get people out of ATUs, a larger group with vested financial interests join committees and reports, that seem to get us nowhere.

Earlier this year, in February 2015, the National Audit Office reported on Care services for people with learning disabilities and challenging behaviourA grilling by the Public Accounts Committee revealed Viv Cooper of the CBF to be just about the only person who appeared to both understand the task ahead and be passionately committed to closing ATUs now, rather than to be overwhelmed at the scale of the task or reluctant to commit. The Committee didn’t of course meet any experts with a learning disability. Our campaign responded to the NAO report with our own audit Actually improving care services for people with learning disabilities and challenging behaviour.

So the question of this week’s #107days is ‘Do we need another inquiry?’.

Day 61: Justice – one stitch at a time #107days

Those of you who regularly read the blog (and someone is because our web hits passed 30k this weekend, thank you) will have noticed that Day 59 was adopted for a quilting exhibition. Today is another quilting action, adopted by Lucy and Cardiff Law School, to share their day. We hope that they will inspire others of you to take part in the Justice Quilt, there is still time, but you’ll need to be quick, patches need to arrive by May 31. Here’s what they had to say:

Connor regularly featured in his mother’s blog as ‘Laughing boy’ (LB), and became known to many within the disability and wider community through her tales of his jokes, creative endeavours and adventures. We learned about his love of transport, drum and base music, trips to London and his wide circle of family and friends. Connor’s death stunned those who had followed his mother’s blog, and its reverberations are being felt throughout the UK and around the world. A creative and organic campaign for justice – #JusticeforLB and 107 Days of Action – sprang up on social media, with a diverse range of people ‘adopting’ a day to coincide with Connor’s detention in the unit in 2013. Each adopted day involved an activity to raise awareness of what happened to Connor and the injustice faced by other people with learning disabilities in the UK and around the world. Connor’s own artwork features prominently in the campaign, adorning postcards, pencil cases, badges, and even our own conference flier. Buses also feature regularly, one highlight being a bus company dedicating three buses to Connor.

Here at Cardiff Law School, we held a very unusual and creative seminar, befitting an irreverent and creative young man, to join in the 107 Days campaign. We are very fortunate at Cardiff to have Professor Janet Read as an Honorary Professor of Law. Janet’s research specializes in the rights of disabled children and adults, and she also happens to be a super stitcher, and one of a creative trio who are putting together a Justice Quilt as part of the 107 Days campaign. Together with Professor Luke Clements, Dr Lucy Series and Erich Hou, we held a seminar explaining what had happened to Connor, describing some of the wider justice issues affecting people with learning disabilities and talking about a long and proud tradition of stitching and resistance. We were delighted that a delegation from Cardiff School of Art and Design came along, and around thirty or so of us spent a few hours stitching and gluing, knitting and drawing on squares for the Justice Quilt, whilst thoughtfully discussing what had happened to Connor and what needed to change.

Day61CdfQuilt

Connor’s death did not happen in a vacuum and was not an isolated event. A recent study found that 42% of deaths of people with learning disabilities were ‘premature’ (the CIPOLD study, 2013), a phenomenon which Mencap has called Death by Indifference. A major report by the House of Lords Select Committee on the Mental Capacity Act 2005 heard evidence from a wide range of sources of families of people with learning disabilities being pushed aside by professionals, as Connor’s family were found to have been. Several studies have raised concerns about unlawful de facto detention of people with learning disabilities; for the last months of his stay in the unit Connor did not have any formal detention safeguards which could have scrutinised the basis of his stay there.

The kinds of assessment and treatment unit where Connor was detained have been plagued by successive scandals over the last decade – from the Cornwall scandal (2006), to Sutton and Merton (2007), through to Winterbourne View in 2011. Each scandal has triggered waves of public outrage and national studies which have confirmed widespread problems with these types of units (A Life Like No Other, 2007; National Study, 2009; Learning disability services inspection programme, 2012). An annual ‘Census’ set up in the wake of the Winterbourne View scandal found that 3,250 adults with learning disabilities remain in these units; over half have experienced self-harm, an accident, physical assault, hands-on restraint or seclusion during the three months preceding the Census. Last week, the Minister for Social Care Norman Lamb described a scheme set up in the wake of Winterbourne View to move people out of these hospitals as an ‘abject failure’ (HSJ, 2014).

Connor’s preventable death brought home that these studies and reports are not just about statistics, they are about real lives ensnared in systems which deny people opportunities to flourish and leave them vulnerable to abuse, prolonged unnecessary detention and even death. As successive policy initiatives to address these issues have failed, it is clear that in some ways the problems have a very complex etiology – from a lack of resources and appropriate provision of support in the community, through to the failure of legal and regulatory frameworks which are intended to protect human rights. One study even suggests that the structure of our financial systems may favour models of care based on detention and ‘warehousing’ over support for independent living in a person’s own home and community, even though the cost of these units can be eye-wateringly high (NDTI, 2011).

Yet in another sense, Connor’s death reveals that the roots of the issues can be remarkably simple, even if they are not easy to change. They are about recognizing – in law, policy and in everyday life – that people with learning disabilities have lives of equal value to others, that their aspirations, relationships, talents and individuality should be valued and supported on an equal basis with others. This is why Article 8 of the United Nations Convention on the Rights of Persons with Disabilities emphasizes the importance of raising awareness of the rights and dignity of people with disabilities and combating stereotypes.

Activities like quilting may seem far removed from the law, but by creating a space to talk about Connor’s life – as well as his death – we hope to promote awareness of the capabilities of men and women with learning disabilities, and reflect on how we can contribute towards change in our work and everyday lives.

Day 46: The violence of disablism #107days

Today was adopted by Katherine Runswick-Cole; when I asked her why she’d got involved with supporting #JusticeforLB and #107days, this is what she had to say:

I first met Sara at a Disability Studies conference, we were both studying for our PhDs. Meeting Sara was exciting because we shared the same research interests but also because we were both mothers to young dudes. Sara and I stayed in touch, wrote a couple of academic papers together and every so often we would find ourselves at the same conference and have a bit of a gossip about life, the universe and everything! In fact it was Sara who introduced me to the joys of Twitter and, of course, I followed her blog.

Like many other people who have been touched by #JusticeforLB, I never met Connor, but through knowing Sara and reading her blog, I felt as if I had. The stories Sara told with such love and humour remind me of my own dude, and her family stories so often overlapped with ours.

Katherine, has written today’s post with Dan Goodley (who you’ll also meet again on Day 100). This is what she is up to:

I’m now Senior Research Fellow in Disability Studies & Psychology at Manchester Metropolitan University and I’ve been invited to give a paper on the theme of disability and violence on 6th May, 2014 at the Norwegian Network of Disability Research 6th Research Conference in Lillehammer, Norway. The blog posted today, co-written with my friend and colleague, Dan Goodley reflects on some of the things I’ll be talking about in Norway, including #JusticeforLB.

LB_Day46

This is what they have to say:

The Violence of Disablism 

Like many people, we’ve been following the #JusticeforLB #107days closely. We’ve been inspired by the actions of others in support of the campaign and horrified by the revelations of the terrible treatment experienced by people with learning disabilities that continue to unfold as the #107days continue.

We’ve followed many of the blogs that have commented on the tragic death of LB including those of Chris Hatton, Rich Watts, George Julian, Jenny Morris and of course Sara Ryan‘s own powerful and deeply moving blog, and we’ve wondered what we have to add to what has already been said so clearly and carefully by many others.

However, it was Jenny Morris’ claim that Connor was a victim of ‘institutionalised disablism’ that prompted us to write this post. We agree with Jenny and her comments made us reflect on what we had previously written about disability and violence.

In 2011, we published an academic paper called “The Violence of Disablism” in the Journal of Sociology of Health and Illness. The paper was written as part of a wider research project focused on the lives disabled children (“Does Every Child Matter, post-Blair?: the interconnections of disabled childhoods”). Violence was not initially a focus for the study, but, sadly, in our work with children and families violence emerged as a distressing and disturbing theme.

We heard about disabled children being bullied on the bus, in toilets and on the street. We heard about families being marginalized and excluded because their children were “different”. We heard about schools where children were man handled and emotionally bullied by staff. We described this as the “violence of disablism”.

The violence that Connor experienced tragically ended in his death: the report of inquiry into his death documented that he was subjected to numerous incidents of ‘face down restraint’ in his 107 days in the unit. In the end his life was rendered so value-less that no one thought it worthwhile to check on a young man with epilepsy while he was alone in the bath.

The report of inquiry made it clear that individuals played their part in Connor’s death.  It is right that the staff members who left Connor alone to drown should be held to account, but there is a danger that if we focus our anger at individuals alone, then we will be failing Connor and all the dudes who continue to be subjected to the violence of disablism. Focusing on individuals allows wider communities to distance themselves from the bad acts of few bad individuals. Much of the response of the service provider has been to suggest that focusing on individuals means that we don’t have to pay attention to the multi-faceted, mundane and engrained ways in which the violence of disablism operates in peoples’ lives. We desperately need to address the systems and cultures that contributed to Connor’s death.

Winterbourne View and Slade House were located on industrial estates, how many other Assessment and Treatment Units are located on the margins of their communities? What other group of people, apart from people with learning disabilities, would ever experience a ‘stay’ or, indeed, live on the edge of an industrial estate? Currently, despite Winterbourne JIP, 1,500 people still live in ATUs, 14 of them are children.

As we saw in our research project, the processes that de-value the lives of people with learning disabilities are everywhere and they start when disabled children are young. To recognise that we live in a world that is inherently disablist permits us to start addressing a number of urgent questions:

  • Why are adults with learning disabilities endlessly placed in the periphery of our communities?
  • What kinds of things do we value about human beings and how might we broaden our values to include those human beings who might not fit with the ‘normal’ category?
  • How helpful is it to talk about normal? Might it be more helpful to think of all of us as abnormal, anomalous, different and divergent?
  • What needs to be done NOW to honour #JusticeforLB?

Katherine will be sharing this paper in Norway in a few days time; as the ripples of what happened to Connor, and the JusticeforLB campaign, spread ever further, it really is time for change. The final word goes to Katherine (and Sara):

In the midst of the tragedy and devastation that follows Connor’s death, I do believe that change is possible and that through the #107days tweets, blogs, papers, presentations and marathons, we can begin to build that change. So our post is written as we hold on to Sara’s words that “if anyone can effect change in the way in which learning disabled children/adults are treated, I’d lay my money on a bunch of (raging) mothers of disabled children”.

#RagingMother

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.