Week 13: What I learned from 10 weeks working in a large disability charity head office #LDWeek15 #107days

This post offers personal reflections about an experience just over two years ago. It is my (George Julian’s) opinion, reflections and memory. I offer it as food for thought for #LDWeek15 as JusticeforLB Week 13 continues to explore whether charities are part of the problem.

This post is not an attack on all (or any) charities for an attack’s sake; it is not fiction or exaggerated; it does not question the intention of the many, many excellent people who choose to work for a charity, although it does question the blanket assumption that all who do are quasi saints! I’ll come to that point.

My experience

After eight years working in a (very) small national organisation, trying to make a difference to people’s lives within many constraints, not least working underneath the umbrella of a very confused, multi-purpose charity, it was with joy in my heart and a spring in my step that I pitched up for the first day of a maternity cover post in the (self-named) leading learning disability charity in the UK. I was due to hold the position of Head of Research and Impact, a perfect match for my skillset and professional expertise and qualifications. Having completed a PhD looking at the education of profoundly disabled children over a decade previously, I was delighted to return to the learning disability arena and confident with a focus on research and impact had a contribution to make.

My experience was short lived however and I left after 10 weeks. There were many reasons for this, including large scale restructuring within the organisation and my complete disillusion with what I found, compared to what I’d expected!! The thoughts that follow have percolated over the last two years and I offer them now for debate and discussion.

I have written a series of general statements that emerged from my experience, I’d welcome your contributions and comments and would love to receive examples of where my generalisations are misguided, I genuinely hope a lot of them are.

1) It is incredibly difficult to critique a charity I’m not sure whether this is a uniquely British stiff upper lip, terribly polite, hold our resolve thang, but it seems to be incredibly difficult to in any way to critique the work of a charity. Invariably it is met with at least some suggestion or kick back that you’re somehow a) being unfair b) denigrating the brilliant people who choose to work for charities c) are unaware of their exceptional work and so on, and so on.

2) It is also difficult to be a dissenting voice within a charity I suspect for some similar cultural reasons as are at play in the first point, together with an unhealthy dose of confirmation bias, it is hard to truly challenge within the hallowed walls of head office. A relatively new CEO and a senior management team looking to assert themselves all too readily overlook those within their teams, rushing to squash autonomy in favour of compliant flag wavers for their latest strategic plan.

3) Not everyone who works in a charity does so because they believe in the charitable cause, nor are they necessarily exceptional at their job Pretty much like any organisation, there are good and bad within charities. A quick glance at charity accounts will show that this doesn’t always come without a cost, seemingly huge amounts of charitable funds are spent on redundancy or termination payments.

4) Not everyone in a charity is poorly paid I’m not for a minute suggesting that they should be either, however, if your CEO is taking home over £100k I’d sort of expect them to be bloody good at their jobs, and at the very least for the charity to be effective and innovative.

To give you some perspective on this, I had a quick look at Mencap’s 2014 Annual Accounts and can share that their senior management team salaries minus pension contributions (I assume it is them given they’re all on £60k plus) are as follows:

£60–70k: 8 staff members

£70-80k: 6 staff members

£80-90k: 2 staff members

£90-100k: 3 staff members

£100-110k: 1 staff member

and presumably the CEO, one staff member, takes home £130-140k.

These are not insignificant figures, and this total spend on large salaries, sits alongside 7 staff members who took home over £60k when including their termination payments (1x 60-70k, 3x 70-80k, 2x 90-100k and 1x 110-120k).

5) Excessive staff turnover or excessive staff retention – pick your poison The uninitiated may look at the salaries and termination payments above and consider 2014 an unusual year, a new CEO obviously changed the strategy at Mencap.

However a tiny dig beneath the accounts surface reveals that in addition to the 7 staff members taking home over £60k including payments when their contracts were terminated in 2014, there were 5 in 2013, 13 in 2012 and 11 in 2011.

If we assume a mid range payment in the bands offered that’s £595,000 in 2014, £615,000 in 2013, £960,000 in 2012 and £975,000 in 2011.

How can any organisation defend such waste?

6) Large, national, leading charities are no more organised, slick/devoted/competent than many smaller charities or organisations with tiny staff teams Perhaps the biggest shock for me on arrival in head office was how inefficient, uncoordinated and generally uninspiring life was. I’d fantasised about a large charity being a slick operating unit, about IT services being efficient, strategies and action plans being in place, coherent strategy and measurement processes. Who knows, maybe it is unrecognisable in its progress over the last two years, but my experience was of a chaotic and confused organisation that struggled to understand what its priorities were, never mind any of the rest.

7) Business and turnover are key In one way you could argue this is par for the course, a sign of our times, inevitable – that business should dominate charitable activity. Indeed, given the salaries paid for the management team, you’d almost welcome efficient and competent business drivers underpinning all activity, that could then ultimately improve the lives of the people it is meant to support. The reality in my experience was that money talked, anything could be written into a funding bid to secure funds, that was more important than due diligence of the activity that followed. I suspect my experience was in no way unique but it appeared that on too many levels the money tail was wagging the dog; projects and bids were devised to meet funding calls, strategic plans (where they existed) were adapted and tweaked to meet a newly funded ‘need’.

I’m no business expert, it’s not for me to say whether this is an appropriate course of action or not, I’ll leave you to make your own mind up. That said, if you have no vision, or if your vision is embedded wherever the latest pot of money is, rather than where your end beneficiaries are, you probably shouldn’t call yourself a charity!

8) You can hide anything you like with ‘good’ reporting and messaging Call me naïve but I desperately wanted to believe that the focus would be on the charitable aims I’d researched before deciding whether to take the post; campaigning, improving people’s lives, supporting learning disabled people – what’s not to like?

What I observed was that reputation was key; managing the message was as important (if not more important) then delivering on quality or improvements for learning disabled people.

If any charity believe in what they stand for, then just get on and do what you’re aiming for. For example, if your focus is on supporting learning disabled people to get work, employ them. Not one or two tokenistic people who can be sat on the reception desk and brought out for public events, I mean really employ them. If you can’t manage to walk the walk within your own organisation how the hell do you expect the rest of society to? Which leads me to my penultimate observation…

9) Beware of values that are for wallpaper not for living by! Everywhere I looked during those ten weeks I’d see value statements, they were stuck on the walls, in the lift, on the screensaver that flickered across your laptop; bold, ambitious, optimistic values, but to be honest that’s where they mostly stayed. If you have to plaster your values everywhere then they clearly aren’t embedded within your organisation.

My experience, and I’d go as far as to say those of many other colleagues there at that time, did not reflect the values being espoused. If you can’t treat your staff well, if you can’t treat the beneficiaries of your charity well, if you can’t actually make progress to what you’ve been talking about for years, maybe it’s time to shut up shop, redistribute the wealth and let some others have a go.

10) Stop speaking for – give up the power I’m not sure how anyone can be the ‘voice of’ or how it helps. Maybe it’s time to stop speaking for and just give over the power.

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Week 11: Raising awareness #LBBill… the story so far #107days

Last week, Week 10, we asked the amazing collective of campaigners that make up #JusticeforLB for help. We asked you to tell your local MP about the #LBBill and ask for their support in the forthcoming Private Members Bill ballot on Thursday. We asked and you delivered, we couldn’t be prouder or more grateful for your response. This is what the #LBBill map currently looks like:

LBBillContacted1-285

We know that the map gives a good overview, but that it’s hard for some of you to see whether your MP has been contacted. That’s ok because we’d like all MPs to be contacted as many times as possible, we think it’s important that MPs know their constituents are interested and keen to see the provision in the #LBBill enacted, so don’t worry about duplication, that’s a good thing.

We know now that 285 MPs (out of a total of 650) have been contacted about the #LBBill. It is only a week ago that we asked for your help, and what a response in a week. Of the 285 MPs who JusticeforLB’ers have contacted, 137 are Conservatives, 1 Green, 113 are Labour MPs, 4 Liberal Democrats, 4 Plaid Cymru, 25 are SNP and 1 is UKIP.

Not only have 285 MPs been contacted, but 84 of them have been contacted at least twice, 24 MPs three times, 8 MPs four times, 3 MPs (Caroline Lucas, Diane Abbott and Cat Smith) have been contacted at least five times and Paul Blomfield, MP for Sheffield Central has been contacted at least six times. We say at least because we’re aware that despite our best attempts we may have missed some contacts, or not know about them. That’s ok too because once we know who has a spot in the Private Members Bill ballot we’ll ask anyone who has contacted them (or lives in their constituency) to let us know.

So please keep contacting your MPs, if you’ve not had a chance yet please tweet them, email them or write to them. If you have contacted your MP please encourage a friend, family member or colleague to contact theirs. If you’d like a reminder of why the #LBBill is important, you can:

If you’d rather watch a film, you can check out the introduction to the LBBill and where it came from here:

Finally, if you’d like to meet some of the people for whom the #LBBill could make a difference, then check out:

and

Pledge Poster

Week 10: Why the #LBBill is important to me #107days

Today’s blog post is a guest blog from John Lish. When the first draft of the #LBBill was shared, John was one of the many people who provided feedback, and his feedback is directly reflected in, and vastly improves, the current draft of the Bill. As part of Week 10, an action week to encourage you all to write to your MP and tell them about the Bill, John offered to share a blog post about why the Bill was important to him. Here it is:

Although I had heard of Connor Sparrowhawk and his death through news reports, I hadn’t been aware of last year’s #107days campaign. It was a conversation with Claire Jones (a contributor to the Justice Quilt) during a break in our work with the Barker Commission that brought the Justice for LB campaign and the LBBill to my attention. I joined the Facebook page set up by Mark Neary to discuss the LBBill shortly afterwards.

Now, like Connor, I am on the autistic spectrum but that in itself doesn’t entail motivation or importance to this campaign. It allows some perspective and insight but the essential drivers to support this campaign are a visceral sense of injustice and a desire to see change occur that allows everyone to have the support that enables control over their lives which most take for granted.

Yet there is a personal element to my support and it revolves around the idea of time. I was diagnosed as being on the spectrum in my late 30s a few years ago. Thinking back, I can see where my autistic traits interplayed through my life such as my intolerance of adult authority figures if I thought them idiotic and would express that opinion. These days, I suspect that 7 year old would be diagnosed with ‘oppositional defiant disorder’ and my parents offered drug management of said condition. In the 1970s, I was just considered to be a badly behaved awkward git. While today’s world is different, I’m not entirely sure that it has progressed in an entirely beneficial manner.

That seems to be particularly true when dealing with teenagers who happen to be autistic and/or have learning difficulties. My teenage years were difficult for me and my family and there were periods where none of us coped with my depression and behaviour. The difference made to my family and I was the community support from the local Child and Adolescent Mental Health Service. It was appropriate and gave me the space to work through the complexities within my head.

Reflecting now on what occurred some 25 years ago, the definition of adolescent seems broader than today. The past wasn’t obsessed with the notion of “transition” that exist today and having rigid barriers between child and adult services. There was less money around as well which may seem a bad thing but given the growth in ATUs which have coincided with the pump-priming that occurred in the NHS from the turn of the century, more money appears to have facilitated more interventions with worse outcomes.

There also seems to be more labelling of conditions which is a concern when issues such as mental health problems are seen as a result of having autism for example. That may be true for some but equally we shouldn’t lose sight of someone with autism who just happens to have a mental health problem. Their autism will affect the state of their mental health but we shouldn’t assume it drives their mental health issues as the individual gets consumed within the condition. This is why clause 8 of the #LBBill is so important.

This is why I feel fortunate. Back during that dark period, I didn’t have a label of a condition. I was just a young man who was depressed, alienated and inarticulate. Importantly I was given the time and space to find myself. A process that has continued to this day. The point about autism is that its a development disorder but it doesn’t mean the absence of development, merely its a different process. Sometimes that is close to normal development or it can be very different in expression or timescales. It is always very human.

That perhaps is the hardest part of this #107days campaign. That Connor didn’t get the time and space he deserved and that absence of time is marked by this finite period. That feels very cruel.

So the #LBBill is important to me because all the dudes deserve the support, time and space to live their lives however and whatever that looks like. The support I’ve had, the time and space to explore and experience the world shouldn’t be a gift to be bestowed but simply a human right of expression. There is some distance to go but if the #LBBill became an Act then it would be an important step towards achieving that.

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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:

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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.

Moon on a stick

What a difference a year makes? #JusticeforLB

It’s now 74 days since the spectacular finale of the #107days campaign, 439 days since LB died, preventably in STATT.

Progress towards #JusticeforLB continues at a pace, in the last week alone we’ve unveiled the beautiful LB Justice Quilt, and yesterday we launched the LB Bill website. All this in addition to the other actions documented in our earlier post about maintaining momentum. Quite a lot of action for an entirely volunteer campaign figured headed by a family in the worst situation imaginable. So yesterday Sara and I were talking about how much has been achieved since the end of the #107days, in those 74 days.

Contrast that progress with the progress made in STATT in the 74 days that immediately followed LB’s death. Over to Sara:

Apologies for the somewhat ironic title for this post. A year ago this week, the CQC went into the Slade House site (which included the STATT unit) and did an inspection that (at last) made visible the level of disfunction/malaise/failure that characterised provision there.

A marker of how bad it was, LB’s death hadn’t sparked any apparent consideration around whether or not there might be issues around the quality of care provided. Nothing, in 74 days after the worse outcome of ‘care’ imaginable, no action, no change, no improvement.

The CQC inspection team pitched up for a routine inspection and did their job.

The full horror of what the team found can be read here. It’s a deeply sad, harrowing, unbelievable and enraging read. And was followed by similar failures at other provision in Oxfordshire.

Here in the justice shed we try to remain positive and optimistic so, in the spirit of 107 days of action, we raise a cuppa to the CQC and effective inspection of health and social care provision.
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It is impossible to know, but our suspicion is that without CQC conducting routine inspections, issuing enforcement action and continuing to monitor the ‘progress’ at Southern Health, it is a very real possibility that STATT could still be open. The inevitable outcome of that is too much to imagine.

We have a long old road to get #JusticeforLB, but there are inklings that in small ways we may already be improving things for other dudes. So, as ever, thanks for all your support. Huge thanks also to CQC, for doing their job, but doing it with care, compassion and attention to detail, something the evidence suggest were rare commodities around STATT.

Day 106: Talking and remembering #107days

Today, our penultimate day, is shared between Laurie and Sara’s colleagues, Jo, Adam and Luis, at Healthtalkonline.

Laurie is a 53 year-old person with Asperger’s syndrome. Connor’s death had a profound impact on her life because she is, herself, the parent of children on the autism spectrum.

Laurie wasn’t diagnosed until January 2006, but she had this to say, “it [being diagnosed with Asperger’s syndrome] has changed my life. I immediately started educating myself on autism and the Asperger’s side of it and getting involved with autism research. It’s how I met Sara”.

Laurie was interviewed by Sara, in September 2007, for the Healthtalkonline series of interviews, she recalls:

She let me give her a lift back to the train station, I’d been involved with care services since I was 9 and wasn’t used to being treated like a human being. Just because we’re on the receiving end of ‘help’ doesn’t mean we cannot, at the same time, give something in return.

Out of curiosity, I asked Sara what made her so interested in autism and it was in that short car journey Sara told her about her son, who was autistic, LB.

Laurie volunteered to write a blogpost for Day 106, that she’ll publish on her own blog too and she is asking for donations for LB’s Fighting Fund for her birthday.

It’s my birthday today; or, at least, should be. Providing this story gets published on the right day after being completed and submitted in a timely manner, it ought to be July 3rd. If it is, then well done all of us for coordinating everything to such sweet perfection. If not, well, there’s always another year. At least we like to think so. Birthdays have always been rather more significant than Christmas, for me, never having been a lover of the melee surrounding such a communal festival. While we may share our special day with several million other people around the world, we do not know most of them and, unless we are one of a multiple birth, will probably be the only person in the family celebrating their personal ageing process that day.

Do others tie global dates and events to things we can pin to our personal experiences? Like remembering what we were doing when JFK was shot. Bit before my time but you get the point. Where were you when you heard about Elvis? And how did you first hear the news of Princess Diana’s terrible car accident or the Twin Towers ‘tragedy’? What is it that makes me remember November 14, 1972 as the day Princess Anne married Captain Mark Philips? Heaven’s sake. That their wedding day fell on Prince Charles’ birthday? Why would anyone outside the immediate family remember that in the first place? Maybe my brother had a point when he said I was always good at remembering dates, which was astonishing news. How could I possibly be good at something I forgot most of?

Days and dates and measurables are important, very often, to people on the autistic spectrum and I am pretty typical in that aspect. This year, on the day before the first anniversary of Connor’s death will no doubt see it adding a lot of reflection on life, death and the passing of time. I will be thinking back to how I spent the day on July 3 last year. What were you doing? I cannot remember. Some birthdays are more memorable than others.

There is a Biblical proverb which says: For to him that is joined to all the living there is hope; for a living dog is better than a dead lion. (Ecclesiastes 9:4, JPS 1917 ed). None of us wishes to be old, although many have longed for the wisdom acquired by years to have been more evident in our youth.

As the 107 days has passed and we have, together, counted them, a personal image has grown in my head, brought back from a dusty recess of a childhood memory and a visit to old Mrs Abbot. It was almost forty years ago and shortly after Christmas. Let me take you there.

There’s a clock standing in a dark wood panelled hall; a grandfather clock, standing to the left, set there by Old Father Tyme himself, surely. A dusty Persian runner stretches from one end of the polished floor to the other. Behind each door lurks a terrifying secret; maybe a monster ready to leap out and interrupt the sound of the languid tick (breathe) tick (breathe) tick (breathe) as its pendulum ambles from one side of the clock’s glass door to the other, hypnotising the dark Victorian house into submissive torpor. Maybe the door to the right will slowly creak open to allow a bent old hag to shuffle through on her slowly unwinding mortal coil? Perhaps the incumbent ghost is about to roll in from underneath the cellar door, like a sticky fog to rise up to the ceiling before stealing the souls of the petrified child shivering with fear in the gloom?  Words from Shakespeare grow like creeping ivy across the memory.

Tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day, 

the clock ticks and breathes. Old Father Tyme stands at the door.

To the last syllable of recorded time;

and all our yesterdays have lighted fools the way to dusty death.

Out, out brief candle!

Life’s but a walking shadow, (Macbeth, 5:5:19-25)

Terrified, the frozen child stands like alabaster, hypnotised by the minute hand defying gravity to reach the top of the hour and chime.

This year, I will spend much of my birthday thinking about a remarkable young man I was never privileged to meet and whose family, no doubt, be thinking back one year to the last time life had some kind of ‘normal’ attached to it. To his family, I extend a Jewish traditional greeting on the death of a loved one and wish you all ‘long life’. May the memory of Connor, your lion, your Laughing Boy, remain in your hearts forever with the certainty the shadow of his life never leaves you.

Laurie was being interviewed by Sara for Healthtalkonline. Today is also shared by her team of colleagues and this is why:

As friends and colleagues of Sara, the Healthtalkonline team have all participated in the #107days campaign individually with contributions including music, sewing skills and a guided tour of London. But we wanted to contribute as a charity too.

For those who don’t know, Healthtalkonline is a charity website that provides health information in the form of people’s experiences. We do this by interviewing people on film about their experiences of health issues and making the videos available on the website. The interviews are carried out (and the data analysed) by researchers from Sara’s research group, The Health Experiences Research Group (HERG) at Oxford.

Sara has worked with HERG and the charity since 2006 and is responsible for our Autism and Learning disability health sections. In fact we share today with Laurie who contributed her story to Sara’s Autism experiences project. Although separate, the two organisations have been closely intertwined from the time we were founded over 13 years ago and have shared an office for almost a decade.

The charity and research team were all together in the office on the day Connor died, in shock and in tears for our dear colleague’s beloved son. The day before this, in a sad twist of …something (for which we cannot find a word), Sara agreed to be interviewed about Connor so that a member of the team, Sophie, could practise her interview skills for another Healthtalkonline project. This interview was never meant to be made publicly available but in the days following Connor’s death, it became a valuable memento for his family.

We could think of no more fitting way for us to take part than by adopting day 106, exactly 1 year after it took place, to share this interview (with Sara’s permission) on Healthtalkonline. We’ve divided the film into 4 parts:

Sara talking about Connor and what a dude he was

Sara and Connor’s journey to diagnosis

What Sara had to say about accessing decent support for Connor, something that proved difficult throughout his life, long before he went into the unit

Sara talking about her blog, which has become a bit of a phenomenon, and the value of social media

In editing these videos it occurred to us that this will be the first time many followers of the JusticeforLB campaign have heard Sara speak or even seen what she looks like. Many people may not know what life was like for Sara’s family before Connor went into the unit.

By putting a face and voice to the name, we hope these videos will add a new dimension to the story and a chance to say again what made Connor great and how loved he was.

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:

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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.