Week 4: Listening to families; the moon on a stick? #107days

We were delighted with the response to Katherine’s post on mother blaming yesterday and we continue Week 4 with a post from Sara:

On April 13 2013 I made a complaint to Sloven/OCC about the period of time leading up to LB’s admittance to STATT. My main complaint was Overall I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated. This complaint was largely dismissed by a Sloven internal review. Five weeks later I raised urgent concerns with STATT staff because LB had had a seizure. They’d noticed he’d bitten his tongue but hadn’t made the link with seizure activity. Six weeks later he was dead. [Howl]

I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated.

Person centred planning is (or should be) at the heart of social care provision (in the same way patient centred care should be central in healthcare), and techniques like Circles of Support are becoming more common. Families are a remarkable resource for health and social care staff. I wrote about this in an article to do with diagnosing autism a couple of years ago arguing that parents maybe the best resource in identifying autism. They typically understand and know their child/sibling/grandchild better than anyone. They love their child/ren and want the best for them. As Katherine writes, they want their child to have the same life chances as everyone else. But this love, expertise, knowledge and understanding is too often dismissed and ignored. Health and social care providers/staff appear to think they know better about the person they are supporting and families are portrayed as problematic.

Funnily enough, we don’t necessarily know we’re portrayed as unreasonable, or worse. It’s only on reading health or social care notes that this may become apparent. After Mark Neary raised concerns about Steven’s clothes disappearing, the social worker famously wrote There’s always something or other with Mr Neary… in an email to staff. Sally commented on my blog last week:

Blaming parents seems peculiar really and there seems to be little reflection on the part of these professionals to maybe reflect why Mark might want to know where Steven’s clothes are. Or why Sally turned down a particular service. Boxes of records and emails in the Justice shed recount my apparent hostility, refusal to accept the moon on a stick and general flakiness, positions inconsistent with other areas of my life that I seem to manage fine; bringing up LB’s sibs and working full time (although the kids might disagree).

Why aren’t families listened to?
I’ve tried to tease out some possible reasons below. These are early thoughts and there is quite a bit of overlap between the categories.

1. Basic humanity: If someone isn’t seen as fully human there’s no reason to bother to engage with family members. Much easier to just get on with the task at hand – containment at the lowest possible cost – and exclude pesky relatives who bang on about better care, missing clothes and the like.
2. Background: By the time the child reaches adulthood, families typically have experienced some fairly full on tough times in terms of accessing support across the years. Adulthood offers little certainty, no imagined future and deep concern about what will happen when parents are no longer around. Not understanding or recognising this background can too easily lead to exchanges that damage relationships between families and professionals.
3. Black hole of trust: Trust is essential (as it is in healthcare) to the provision of good and effective social care yet it seems to be absent from consideration by social care professionals and providers. Fear is probably the most common emotion I’ve encountered in families I know both personally and through work. The lack of engagement with trust flags up a disregard for the expertise and knowledge families have to offer.
4. Budgetary considerations: A lack of available resources/provision can mean that family expectations (that people will be supported to lead enriched lives) is so far out of reach that overstretched professionals don’t really want to listen to families. There are no options so it’s easier to ignore increasingly frazzled and concerned family members.
5. Moon on a stick: There can be a complete disconnect between what families and providers think good care looks like. Providers may think the care provided is good enough and families are unreasonable and/or difficult to turn it down or challenge it.
6. Capacity misunderstandings/misappropriation: The Mental Capacity Act can be used as a bit of a weapon against families. Partly (I think) because of misunderstandings around the workings of the act but also because it’s a handy tool to bash back concerned families and get on with the containment mentioned in 1.

That’s where I’m at right now but I realise this only scrapes the surface of an area that urgently needs attention. Any comments/thoughts/additions or revisions would be great so we could start to really flesh this out. If any health/social care professionals could chip with their experiences, thoughts and observations, that would be fab.

There may be some fairly straightforward solutions here.

Day 103: Person centred practice, nursing students, and a legal webchat #107days

Day 103 is our first three-way share of a day. It is shared by Max of the UK Learning Community for Person Centred Practices, Bridget and Sarah from School of Nursing Sciences at UEA, and Steve Broach from Doughty Street Chambers.

When asked why they were supporting #JusticeforLB and #107days the UK Learning Community for Person Centred Practices had this to say:

We wanted to support the #JusticeforLB campaign because it highlighted how far we still have to go in the UK with promoting person centred planning, thinking and approaches. Even though these approaches were right at the heart of the ‘Valuing People’ strategy for people with learning disabilities since 2001, staff at the Assessment and Treatment Unit where Connor Sparrowhawk was confined in the 107 days running up to his avoidable death did not understand what Connor’s family were trying to achieve by holding a Person Centred Review at the ATU, and did not respect this work, saying it “Was not the Care Programme Approach”. It seems clear from the Verita’s report, and from other accounts, that if the ATU had listened properly to Connors’ family when they told them what was important to Connor now and in the future, and the things that would help to keep him healthy and safe (such as a proper approach to his epilepsy), his death could have been avoided.

This is what they decided to do:

I contacted the campaign on behalf of the UK Learning Community for Person Centred Practices. Our national gathering was coming up on April 30 2014, and I wanted to ensure that everybody there heard about Connor’s story. At the closing of the gathering, Gail Hanrahan, a close friend of Connor’s family spoke to everyone so passionately and movingly about Connor and his life. We shared a #JusticeforLB postcard with every participant (about 50 people) and asked them to make 2 pledges:

1. Firstly to tell us how they would use their postcard to share Connor’s story, and
2. Secondly what they would do in their work to ensure that within their sphere of influence, people and their families were listened to.

We’ve followed up those pledges asking people to let us know what they’ve done. Here are some of the responses we’ve received.

Cath Barton said ‘I always read Sara’s blogs and share and have made a pledge for George Julian’s #hairhack fundraiser which is raising money for Justice for LB and Rowcroft Hospice’.

‘My action is to always support people and their families to have a voice and be listened to. I hope my role as Community Circles Connector will help people develop relationships and networks which will support them to be heard and valued’.

Penny Jackson said ‘I am due to deliver Person Centred Thinking training in July to our Independent Futures staff and will be including LB’s story within this’

Max Neill took the big #JusticeforLB poster to share with the Preston Learning Disability Forum. They displayed it at events during Learning Disability Week in Preston.

Every story about how these person centred skills have worked and made a difference increases the impetus for change. If we can succeed in turning these person centred behaviours into everyday habits, at scale across whole services and sectors, then we can create fundamental lasting change in the culture, in the way we include and involve families and in the way we regard people.

Max and TLCPCP have written a fuller write up of their context, their gathering and the actions that have followed. You can read it in full here.

The second group sharing Day 103 are staff with interests in safeguarding and learning disability from the School of Nursing Sciences, UEA, Norwich. When Bridget Penhale and Sarah Richardson were asked why they were supporting the campaign they said:

We didn’t know LB personally but followed his mother’s blog from before he was admitted to Slade House and were very upset at the news of his untimely death. We have followed and supported the development of the campaigns since.

They were keen to ensure that a large number of staff and students at their university heard LB’s story. This is what they have planned:

On Day 103, sessions in the Essential Nursing Practice module for first year undergraduate nursing students are being dedicated to LB. The module covers the role of the Community Learning Disability Nurse and one of the specific topics today is about epilepsy; this is a core condition that our students learn about from the beginning of their programme (but also focus on throughout their course).

The Enquiry Based Learning Package is dedicated to Connor and students taking the module will be introduced to him at the beginning of the day. The Lecture on Introduction to Epilepsy will also be dedicated to Connor.

Information about Connor and the campaign will also be available for everyone working in or visiting our building on that day (through a slide on our plasma screen in the reception area of the building). We will continue to raise awareness about Connor, his life and untimely death throughout the coming year(s) – for as long as it takes.

The final person sharing today is Steve Broach, a barrister at Doughty Street Chambers. Described on twitter yesterday as a miracle, a ‘competent barrister able to put suffering people at ease’, Steve has very generously offered to run a legal webchat, an hour long Q&A session tonight at 7.30pm.

Steve will be holding a free web Q&A on the law in relation to education, health and care services for disabled young people in England. Steve will look at both the current law and the changes coming soon under the Children and Families Act 2014 and the Care Act 2014. He will also cover what the Human Rights Act 1998 should mean for the standard and quality of care disabled young people receive. Steve can only answer questions about the law in England, as the other UK nations have different legal frameworks, although some of the general points he makes will be relevant across the UK.

We are very grateful to Steve for his offer, and know that many of you will wish to make use of this opportunity. To participate you can send your questions in advance using the hashtag #JusticeforLBLaw, or add them on our facebook page, or as a comment to the web-chat blog page, and Steve will answer as many as possible tonight.

Please note Steve can only answer general questions about the law and cannot provide advice on individual cases during this session.

Please share the information about the web-chat far and wide, this is a great opportunity, and one that we hope many people will be able to learn from.

Day 96: Oxford Bus Museum #107days

Day 96 was adopted by Brigid Greaney and Kathy Liddell. They wanted to do something with some dudes and dudettes to honour LB and connect with one of his favourite places. Here’s why they got involved:

Like many others who have supported the #107days of action campaign we had never met LB or his family but were both following Sara’s blog, which quite frankly was often the highlight of certainly my day. So well written, funny, inspirational, I would devour it word for word and would frequently recite chunks of it to anyone who would listen regaling the antics of LB, even forwarding it on to my husband who became a convert himself. Then that fateful day. Will anyone ever forget that posting on July 4 2013? 18 words that turned the lives of a family upside down. We felt shock, rage, despair and we had never even met them… we couldn’t even begin to comprehend what they must be going through.

As mothers of young ‘dudettes’ with severe learning disabilities, one of who also suffers from epilepsy we are both well aware of what it is like to have to entrust our young adults to those who deem to know best. A fine balance between letting go so they can develop some independence but wanting to be involved so we can help smooth the path before them so that those inevitable challenges don’t seem quite so insurmountable. As parents we all want the best for our children so why wouldn’t we want to work with those also entrusted to support and care for our loved ones. 18 years of parenting doesn’t just stop overnight as I well know. I’m also a parent to a 21, 22 and 23 year old and am still very involved in helping them make decisions so why wouldn’t we still want to do so for our 18 year olds who need that extra support. Isn’t that what good parenting is all about? So to read that LB who so obviously adored his family, loved life to the full and enjoyed nothing more then making people laugh had died in the care of others was both frightening and heart wrenching!

Here’s what they decided to do:

Like many others we wished there was something we could do to help… but how do you make a difference to a family whose lives were torn apart by what we now know to be a preventable death in a supposedly caring and supportive environment? When the #107days of action was born we knew we had to support it somehow and wanted to do something that was meaningful to our young people, something that they could relate to and something that LB would have appreciated.

So yesterday we took a group of our young dudes and dudettes to visit one of LB’s favourite places, the Oxford Bus Museum in Long Hanborough. One of the things that came across in his Mum’s blog was LB’s passion for buses and all things transport and the enjoyment he got from visiting these places over and over again. Despite living nearby most of our young people have never been here before so we hope that by bringing them here, even though they will not have the pleasure or privilege of meeting LB they will be able to walk in his footsteps and see some of the things that were meaningful to him. And who knows… maybe just one of them will become as passionate about transport as LB and if that’s one of his legacies then his unnecessary death will not have been totally in vain and his family will have the pleasure of knowing that LB has left his mark in the best possible way.

 

Usually with these posts we don’t report on the success of an action because they’re taking place on the day (there may be more we can do re capturing them, more of that later on after #107days and we’ve had a wee break from blogging for summer). However, Kathy and Brigid’s trip happened yesterday which means we know how successful it was, we have the photos and they also sent this lovely covering email, the comment about the staff made my eyes leak a little:

Attached are a couple of  photos from our trip to the bus museum today. It was a glorious time – the staff were fantastic and put on a bus ride for us which was a great success and more importantly the kids loved it – including my own daughter who had a fab time going in and out of all the buses. So it achieved in a small way what we wanted it to do and introduced our kids to a place much loved by LB. More importantly the staff there remember him obviously very fondly and were really chuffed today to find out that LB stood for Laughing Boy. Thank you for allowing us to be part of such a worth while campaign! Kathy and Brigid

As ever, the thanks are all ours.

Day 83: H&SA and BILD respond #107days

A number of the remaining #107days are shared days, and today is a powerful duo of H&SA and BILD. Alicia, from the Housing and Support Alliance (H&SA) and Ann, from British Institute of Learning Disability (BILD) both got in touch to adopt a day with a real urge to do something to make progress. We are delighted at the actions they have taken and feel confident that they will support real progress towards #JusticeforLB and all dudes.

So, first of all why did they want to get involved with supporting #107days and #JusticeforLB? Alicia, from Housing & Support Alliance had this to say:

H&SA is supporting #JusticeforLB firstly because Connor and his family only wanted something simple and straightforward, to get the help they needed and had a right to in difficult times, and it ended in the most unimaginable tragedy. We know that people with learning disabilities that have the most complicated needs can and do get good help, a good place to live and the support they need to live there. It is doable and affordable yet all over the country there are still many people with learning disabilities and families getting poor and mediocre support, being sent away from the people they love because there is no decent support locally and being needlessly hospitalised when all they need is for professionals to listen and respond. It is an outrage.

and Ann from BILD:

Like so many, we at BILD, the British Institute of Learning Disabilities, were dismayed to hear of the death of Connor Sparrowhawk, yet another young person dying whilst in ‘care’.

We were then shocked, again like many others, when the independent report made it clear that his death would likely not have happened had the right kind of support been in place in the unit where has was staying. We can only imagine the distress of his family and friends knowing that his death was preventable.

So many people with learning disabilities and autism have suffered from the lack of the kind of support they have every right to expect and should have. Too often organisations who are there to provide care and support fail to do so. It is people with learning disabilities and autism, and their families, who pay the greatest price.

Then we saw that the organisers of #107days wanted to harness the outrage that emerged in response to Connor’s death to fuel a campaign aimed at ensuring lasting changes and improvements are made. We wanted to join in.

As you can see they both wanted to help make real change. Alicia and her team are doing this:

To support the #107 days campaign H&SA are going to do something practical to help get people with learning disabilities out of institutions. In the latest Winterbourne View Concordat data it says that are 2358 patients living in ATUs that do not have a transfer date.  There are various reasons given for why most of those people do not have a transfer date. For 165 people it says that the reason they are still there is that there is not suitable housing provision locally.

H&SAs commitment to #107days is to try and find out what the local issues are and offer help to get housing for each of those people. We will do this by:

• Contacting each of the 14 commissioners who have responsibility for moving people on
• Finding out what the local issues are
• Offering support, information and contacts to help all of those people get housing.
• We will publish the responses from commissioners on the #107days site (later today) on the 10th June 2014

Also happening today is BILD’s action and you can follow it and participate on twitter using #BILDepilepsy.

To show our support we decided to organise a free event on 10 June, called, ‘Epilepsy – what matters?’, aimed at front line staff, families and anyone interested in epilepsy and people with learning disabilities and or autism. As well as the sessions taking place in Birmingham, we will also use the web, social media, and BILD’s many members, to help raise awareness of the issues around epilepsy support for young people with learning disabilities and or autism.

We are delighted to say that the event is full and there was a waiting list.

The topics the event will cover are:

• Epilepsy misdiagnosis
• Epilepsy and behaviour
• Describing seizures
• Epilepsy – Isn’t that just seizures?
• Impact of epilepsy on learning and behaviour
• The link between epilepsy and autism

We are very grateful to Pam Morris, Nurse consultant, and Emma Tingley, the National Services Programme Manager for Young Epilepsy, for being our speakers, and to Janet Cobb for helping to organise and promote the event.

Beyond 10 June, we will capture the available information on epilepsy in young people with learning disabilities and or autism and make sure this is available on the BILD website for visitors and those looking for support.

We would like to wish the #107 Days Campaign every success.

You can check out the programme for today below, and join in on twitter. We’d like to thank the Housing & Support Alliance and the British Institute of Learning Disabilities for their actions.

Day 53: The golden M (iddle) #107days

Today is a bit of a ‘breath catching, where are we going, what are we doing and how are we doing it?’ kind of day. Lovely Saba Salman provided an independent view of #107days on Day 47. Here we are writing this post from a most definitely not independent view, with a few reflections on what #107days has become and is becoming. To kick off, I dipped back into my blog to see what was happening with LB this time last year. It was the Land of the Golden M day. The trip to the fast food joint that is friend to families with ‘unruly’ kids across the country. He ordered, scoffed and enjoyed. With no sniff that there were only 53 days left in his lifetime. He should have had at least 14,000, even with reduced rates for living in a country in which this label guarantees a default reduction in life length.

Anyway, let’s not dwell on that right now. Let’s think about the same set of days, 12 months later. Well. It’s astonishing. Remarkable. Moving. Inspiring. And unlike other campaigns. Well we think so anyway.

It really has taken on a life of its own. This may be because neither of us have any experience in ‘running a campaign’ and we started off with the sketchiest of plans. I dug back through the mountain of emails to find out when the idea began and found this from George on March 8th;

Was thinking we need to share something on outcomes on fighting fund blog and was hoping might be able to come up with 107 days of action – inspired by tweet earlier. Just a thought, idea, action, memory, reflection each day? Maybe? 

Eleven days before kick off. With no funding. No plan. No rules or regulation. Just a desire for action, a commitment to improve things and an army of similarly enraged people who clearly wanted to do something. George set up a spreadsheet and we took to social media.

Day 25 featured a recap of activity to that point, since then we’ve had another 29 days of pure brilliance. There have been creative contributions including musical ones in the shape of First Note in Luton recording a song for JusticeforLB and Louise and Anne-Marie dedicating a choral performance of laments to LB, artistic ones in the shape of buses and yesterday’s afternoon tea and mosaic making, and many more postcards of awesome arriving.

There have been extreme physical endeavours to raise awareness and funds, including 15 year old Madi who kayaked 125miles over four days and Jane who is in the middle of running 107ks. These personal feats are accompanied by the fulfilling of LB’s personal ambitions, with three school buses and a Scania truck dedicated to LB, his very own fleet.

A number of brave souls have shared their personal experiences, or their hopes, fears and dreams for the dudes they care about. These have included drops of brilliance, a celebration of big man’s birthday, reflections on when care goes missing, thoughts on a disjointed system and working within it, a question of trust, some thoughts on advocacy in speaking up and speaking out, and a post on ATUs, autism and anxiety. We also continue to make ripples slightly further afield, in France and Canada most recently.

There have also been attempts to raise awareness and knowledge by researchers and academics at conferences and through their teaching. Topics included art history and legal commentary, the Mental Capacity Act, the essentials of care, the role of people with learning disabilities in sociological research, a focus on institutional abuse and people with learning disabilities, and the violence of disablism. These academic offerings, sit alongside a remarkable response from learning disability nurses and student social workers. A day in the life of… provided useful food for thought on nursing notes and language, the second WeLDNurses chat was held focusing on preventable deaths, and one student social worker decided to be the catalyst for tenants in her placement setting to develop one-page profiles.

The campaign has been such a success purely because of the contributions and commitment people have made. Such diversity and a randomness that is refreshing, not least because it perfectly captures LB’s quirkiness and irreverent approach to life. We are still only half way with much more to come, including more focus on advocacy and activism; a number of conferences, workshops and seminars; more quilting, a comedy night and the release of 107 red balloons. There will be many more blog posts, videos, animation and music produced and celebrated, including a campaign flag at Glastonbury. There are also a number of days adopted for fundraising activity including 107 London buses in a day, George is shaving her head (we don’t do things by half), and the party night to end all party nights.

There is real momentum and determination for change which (hopefully) can’t be downtrodden and chucked into the inertia bucket.

So is it all worth it? We think so. So far we’ve achieved a number of the aims set out in the Connor Manifesto:

• a Serious Case Review into LB’s death is about to begin and will examine how such poor provision could be commissioned
• an independent investigation is currently being arranged into all the unexpected deaths in Southern Health’s mental health and learning disability services dating back to 2011
• one of the remaining #107days days will involve a meeting with our MP, Andrew Smith, and Deborah Coles, CEO of INQUEST to discuss the issue of independent investigations into every death that happens in a secure (loosely defined) setting.

Anyone who would like to dismiss us as using this case inappropriately, can feel free to do so, but we are proud of what has been achieved so far, and committed to the long haul. For too long people have lamented the state of provision for people with learning disabilities, much hand wringing and head scratching appears to have led to a systemic apathy and not much else, with the Winterbourne View JIP recently described as an abject failure by the Minister. Maybe it’s time for the suits in the system to take a long look in the mirror and ask what their own behaviour is affirming in this malignant system. We don’t need more concordats, we don’t need more of those responsible sitting around meeting tables and repeatedly asking people to share their good practice.

We need people to stop and listen to what people are really saying. To leave their prejudices and fears and professional cloaks at the door, and take the time to hear what people are saying, and join them in their journey to improve things. While they’re busy attending meetings and seeking examples, we’re busy making change. We have 54 days to go and most have been adopted, but we can double up on days. We have a number of actions concluding at the end of #107days, and still many ways in which people can get involved.

We want to finish by reiterating Saba’s call to those in authority:

People need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

There is always room on the #107days bus, and everyone is welcome.

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.

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.

Day 25: taking stock #107days

Day 25 of #107days. I gingerly took a peek back at Day 25 from a year ago. Phew. A good day. LB was on good form. Noisy and bouncy. Fascinated by news of the break in at Rosie’s student house. Day 25 this year is a ‘taking stock’ day while Deborah and Daniel pound the streets LB loved so much in the London Marathon (thank you both so much).

So, what a start. There has been an astonishing response from people and a range of activities/actions that is remarkable.

Gallus and Mr Effie (and a handy stepladder) drew a bus in the sand on a Fife beach while Katie Peacock drew together two Yorkshire villages in a day of connecting and awareness raising. Sukey Carder created LB inspired hairstyles,  winning the hair competition and Zinnia, a horticultural social enterprise scheme, had a day planting seeds to raise awareness and funds for the campaign. On the same day, Kay shared what happened to LB at the Lincolnshire Annual NAS conference.

There have been a range of blog contributions including reflections from mothers, Rebecca and Shelley Mason, an autobiographical reflection from Damian Milton (coinciding with World Autism Awareness Day), and a discussion around Board responsibilities by Amanda Reynolds.

In keeping with the largely (though not exclusively) positive shape of the campaign, we’ve had examples of good practice from Meraud and Adam, Teresa and her sister Ruth, and Michelle and Al. I’d say these were stories of blinking brilliant practice but that would be because my bar is still set too low. These are examples of how things should be.

Still online, we’ve had two twitter/web chats with BUStogether and WeLDNurses. These generated discussion around expectations, training and epilepsy. There are some online daily actions; Mark Neary’s ‘Stories from an Assessment and Treatment Unit’ and WiseGrannie’s ‘Lessons from dudes and dudettes‘ are unmissable. Over at Twitter, Anne Townsend is flying the Justice for LB flag from Canada with daily photos of an LB bus card from different parts of Vancouver. Complementing Mark’s blog, Sam Sly is tweeting daily about ATUs from Cornwall.

Sports related activities have kicked off big time (sorry). All our athletes have excelled themselves and left us sitting in #107Days hut feeling a bit sloth-like… We are in awe of Ruth for running the Hardmoors Wainstones Trail Marathon for LB and her daughter Hope, Lucy for the Exmoor Marathon and Deborah and Daniel for the London Marathon.

Raising awareness in more professional spaces, Bethy spread word of the campaign to Healthwatch.  Jenna from the Foundation for People with Learning Disabilities talked about Justice for LB at the Cornish Learning Disability Partnership Board.  And LB was the opener for the annual Jim Mansell Memorial Lecture at the Tizard Centre last week.

Finally, there are some ongoing ways you can get involved… Through writing a postcard of awesome, signing the letter for Connor, making a patch for the Justice quilt, drawing a picture of a bus and posting it on our JusticeforLB facebook page, or by buying a ticket to the party night on May 31.

These activities have not only knocked our socks off for their complete brilliance (thank you #107Dayers) they’ve also generated quite a lot of tears. Now strangely, for me, this ain’t a bad thing. The blubbing I do when I read/see or join in these activities are soothing tears. I never knew about soothing tears before. They seem to combine a sense of awe, hopefulness and vague optimism with pure emotion. If a diverse bunch of people can pitch in with such enthusiasm and demonstrate such commitment to LB and the other dudes, well…who knows what’s possible?

I’m going to end by (cheekily in her absence) saying an enormous thanks to George Julian for her legendary, voluntary campaign management of #justiceforLB and #107Days. She’s organising these activities seamlessly, professionally and with (almost) unfailing good humour. This is where I’m happy to say, lessons can be learned.

Day 15: Focusing on the person #107days

Day 15 was shared two ways, between Jenna of the Foundation for People with Learning Disabilities (looking back to a presentation she gave yesterday) and the team at We Learning Disability Nurses (looking forward to our first joint twitter chat this evening).

When I asked Jenna why she wanted to support #107days and #JusticeforLB this is what she had to say:

For nearly a year I have been following a blog called my daft life. Something about the funny and touching way this blog has been written has kept my attention. I have laughed and more recently cried at the stories of Laughing Boy. I can’t see an Eddie Stobbart lorry now without thinking of him.

When I started following the blog it was written from the perspective of a parent whose son was in an assessment treatment unit. It struck a cord and made me think and reflect on a pilot I am working on.  The Foundation For People With Learning Disabilities have been commissioned by Kernow Clinical Commissioning Group to work with people who are out of county in assessment treatment units to develop person centred plans.

Jenna, and colleagues at the Foundation for People with Learning Disabilities, saw many parallels between LB’s experience, and that of his family, and many others they are working with:

What clearly impacted on the standard care he received was the failure of the unit to engage those people who knew him best in the care planning and risk assessing processes in place. Much of what was reported echoes the experiences of some of the amazing individuals and their families who I’ve had the privilege to work with over the years. The report states that the investigation found no evidence that the 18 years’ worth of knowledge and expertise that LB’s family had was captured or included in his risk assessment or care plan. We know that the Department of Health’s 2012 report into the Winterbourne View drew similar conclusions about the involvement of people’s families.

They also took the time to read the independent report into LB’s death and picked up on the way in which Sloven Health engaged with person centred planning:

The investigation states that there was no evidence that any person centred planning took place until LB’s family organised a meeting. “We saw no evidence that person-centred planning took place until CS’ formal CPA was carried out” What is also noted is the discomfort felt by some unit staff at the meeting. They spoke of flip chart paper all over the walls. Paper on walls is obviously enough to strike fear into the heart of any health or social care professional. “The wall was covered with paper, and I did query it, and it seemed that this was becoming a person-centred meeting”

Jenna has written a blog post exploring this further, including the views of those she works to support. Yesterday she drew LB’s story to the attention of the Cornwall Learning Disability Partnership Board in a hope to prompt a conversation about others in similar situations.

We’re grateful to Jenna for sharing LB’s story and we believe that the more people who hear about Connor, stop and reflect, the more good will come of his death. Which leads me onto looking forward to tonight’s twitter chat. WeLDNurses (Learning Disability Nurses on twitter) were among the first group of people to offer support to #JusticeforLB. At a time when it felt like we were struggling to break into the system, Sam and Steve both got in touch to offer support. One of the result of that support and leadership from the ground, has been the arranging of three joint twitter chats throughout the #107days. The first of these takes place tonight and focuses on Epilepsy Management. You can read their introductory blog post that explains what you need to do to participate here. The fun kicks off on twitter at 8:30pm and you need to include #WeLDNs in your tweet to join in.

Everyone is welcome to join the chat but I would request that people read and embody the last line in the pre-chat briefing:

As always, WeLDnurses are driven by a positive agenda and while the actions surrounding the death of Connor reflect every never event that should have been, we invite you to join this chat with a positive agenda in mind.

There is a lot of hurt and anger and frustration in our #JusticeforLB community, and no-one is trying to deny or hide that. Tonight presents an opportunity for discussion between people using services, parents, carers and learning disability nurses. We really want it to be about positive learning, not about blame. As I said earlier WeLDnurses have been a huge support and I hope that you’ll join in with the chat with that in mind. See you tonight on twitter.

Day 1: Postcards of Awesome #107days

Yesterday we launched #107days of action to bring about #JusticeforLB and today is Day 1 and we’re focusing on Postcards of Awesome. Postcards of Awesome sees us collecting at least 107 (more if there’s interest) postcards that share what is awesome about a person with a disability. LB was one awesome dude and we know that there are other awesome dudes and dudettes out there, we’d like to share them with the world.

If you are a person with a disability, or the parent, brother, sister, friend, colleague or carer of someone person with a learning disability, then this is an activity for you. We would like you to send us a postcard with your dude/dudette’s first name and what it is about them that makes them awesome. It can be any postcard, we don’t mind, as long as it includes lots of awesome.

We’re starting today by featuring two dudes. One is Luca, who is 10 today:

Luca loves The Rolling Stones, Pink Floyd and The Killers, the dodgems, the beach and ice cream, and hates being kept waiting and traffic jams. Last year his Mum @fnafilms took Luca bowling and he kicked the ball down the lane. What a dude. You can read more about Luca in this special birthday blog post his Mum has written.

Another dude we’ve heard about is Reece, we had a postcard from his mum and another from his sister:

Reece has had epilepsy since he was 12months old. He loves his little therapy dog Scooby and his favourite subject at school is physics. Reece wants to be a computer game designer when he leaves school and spends all his time on his computer. When diagnosed with autism he was relieved to know why he stood out at school. He says he’s not disadvantaged everyone else is…. as he’s got supersonic hearing and a brain like a sponge. Reece is the most loving and kind hearted person you can meet. Laura says ‘Reece is awesome… he teaches me something new every day, sometimes interesting, sometimes not so!’

So those are our first two dudes who feature on Postcards of Awesome but we need many more. We’ll do something to share the postcards once we have them, most likely is that we’ll organise an exhibition of them and take photos and share them online. So please do get involved, we’ll challenge misconceptions one by one. Please send your postcards to:

Postcards of Aweseome
My Life My Choice
The Jam Factory
27 Park End Street
Oxford
OX1 1HU

Day 0: Launching #107days

A year ago today Connor entered Slade House, the assessment and treatment unit where he died #107days later. Last month an independent report found that LB, short for Laughing Boy (Connor’s nickname) had died an entirely preventable death. Today the Guardian published an excellent piece by Saba Salman exploring what happened and the response since Why did Connor Sparrowhawk die in a specialist NHS unit?. Definitely worth a read, but do come back. The article was accompanied by My son died in an NHS residential unit. Every day I wake to the pain that featured extracts from Sara’s blog, which you can read here.

The campaign seeks to inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes. We want to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made. You can read what those lasting changes might look like here: What does #JusticeforLB look like?

The #107days of action start today on Day 0: Wednesday 19 March, and will continue until Day 107, the first anniversary of LB’s death, Friday 4 July 2014. We will use this blog to share information, ideas and evidence of the changes made, big and small. Connor loved buses, London, Eddie Stobart and speaking his mind. These are themes that we’re delighted will feature throughout this #107days campaign.

We have a wide range of activities occurring over the next 107days including: fundraising events such as sales of friendship bracelets, cakes or art work, a number of letter writing opportunities, inclusion of #JusticeforLB at various conferences and meetings, a couple of twitter chats including three organised by WeLDNurses, beach art, the Jim Mansell Memorial Lecture, a couple of exhibitions, runners and triathletes raising awareness or funds, art days in the planning, various bus related activities, and the support of numerous bloggers.

We have 62 days that have been adopted so far and still have 45 that are up for grabs, but be quick, they’re going fast. If you’d like to adopt a day, let us know using the form here. We also have a number of people, with great stamina, who are doing actions across the #107days and we’ll feature these in a separate blog post shortly. We kick off in earnest tomorrow with Day 1: Postcards of Awesome. We really appreciate the phenomenal support that has been shown so far and look forward to everyone’s efforts to bring JusticeforLB and other young dudes.