Day 105: Textile art, provider challenge and a headshave #107days

Day 105 forms our hat-trick of three way adoptions for the week, it is shared by Briony, Mark and myself, George.

First up is Briony, who had this to say about supporting #JusticeforLB:

I wanted to be a part of #107days and the #JusticeforLB campaign after reading Sara’s blog. It was heartbreaking to read and difficult to walk away from. It also hit me hard because my youngest daughter has autism and at nine years old I am aware of the realities of trying to access the support that she needs. It almost always becomes another battle with the system. You get tough, your priorities change and the little things don’t matter anymore. In fact, she is probably the reason that I am finally doing what I’ve always wanted to do.

Briony made the most beautiful wall hanging for #107days, read on for more:


The textile piece that I have made for #107days is centred around a quote from one of Connor’s favourite songs, ‘National Express’ by Divine Comedy and includes a London bus representing his love of buses and the Twitter bird representing the positive impact that social media has had in gaining support for the campaign. I chose this particular quote from the song because I felt it best captured the spirit of #107days and the positive actions people have taken to try and secure a better future whilst fighting for justice for LB.


As it developed into quite a big piece I realised that I could do more than just share photographs of it through social media. I contacted Louise who runs a creative social enterprise called Scrap in Sunnybank Mills, Leeds and she was happy to display it for me in their cafe during 107 days next to Connor’s story. Many different people pass through Scrap so it seemed like the ideal place to reach a new audience and spread awareness of Connor’s story and the campaign.

Whilst making it my youngest came up to me and said, “You’re always making LB stuff!” I started to prepare for what was coming next thinking, Oh here we go! Just because it’s not about you! But then she went on to say, “You should start an LB sewing support group and make buses and signs with his name on…and cushions.”

This insight, together with her unique sense of justice (be it in the form of Dog the Bounty Hunter!) leads me to think that she could definitely teach Southern Health a thing or two.

Next up today is Mark Lever, the Chief Executive of the National Autistic Society (NAS). Mark wanted to adopt a day to write something to challenge himself, and other social care providers. Here’s what he had to say:

Social care providers and the regulators are coming under the spotlight more than ever – and why shouldn’t they?

When a family makes the decision to place someone they love in the care of a ‘third party’ they are vesting more trust in that decision than any other. Local authorities making a placement are rightly concerned that they are spending significant public money on a good service. Everyone has an interest in ensuring the person being supported is well cared for and achieves the best outcomes possible.

If we’re all striving for the best outcomes, why is there not a more open discussion of the lessons learnt when things go wrong?

I am not talking here about the systemic institutionalised failures we witnessed at Winterbourne View. Rather, the incidents that occur even within services run by respected and reputable organisations working to do the best they possibly can for the people they support. As someone running one of those organisations, I can confirm that, of course, they do happen.

Working in social care is very challenging – and simply isn’t the right job for everyone. The people who choose to make it a career are dedicated and passionate about their work. They are certainly not doing it for the money where, for many, the pay is barely more than the minimum wage. To do the job well, they need an incredibly strong temperament and values base.

My concern is that, as services come under increasing pressure, including financial pressure, people being supported risk being seen as commodities and ‘good’ support can mean ticking the right boxes. The values base is in danger of being lost and forgotten as organisations strive to be seen to be doing the right thing and maintain contracts.

As more pressure is placed on providers, we should feel confident that we can share our occasional failures openly so that we, and other providers, can learn and constantly improve.

Instead, we’re currently too often on the defensive. This can lead to us being the opposite of open and get in the way of making changes for the better. We’re necessarily and properly held to account, given we care for often very vulnerable people at public expense. We also have to acknowledge that we’re in a competitive environment, where one organisation’s failure may be another’s opportunity. But this should not lead to a blaming culture, shut in on itself.

I’m not arguing for a ‘stuff happens’ attitude. Rather, greater openness and honesty should reinforce the values base and build on a wider commitment to challenge all service failures with energy and rigour. We owe this to parents, carers and the people we support if we are to live up to the trust they have placed in us.

Here’s what Mark has pledged to do, in addition to offering this blog post:

My commitment to action to support the #107days campaign is to convene a roundtable of 8 to 10 service providers to explore how we as a sector can share more openly the lessons learned from failures in service delivery. The aim will be to learn more and, as a consequence, to support and inform the work to reduce the risk of similar events occurring again.

Finally today, it’s over to me, George. Here’s why I wanted to support #JusticeforLB and #107days:

I’d like to suggest that I considered my involvement in #JusticeforLB, that it was something I deliberated about and mused over, that I was reconnecting with my early career in Special Ed, that I was giving something back, but the reality was it was nothing of the sort. I’m supporting #JusticeforLB because I couldn’t live with myself if I didn’t, it wasn’t so much a choice, as a compulsion. I was one of Sara’s many legions of fans who regularly read her blog about life, and I felt sick to the pit of my stomach on July 4th last year when I read this.

It was 361 days since my grandfather had died, and 231 since my Dad had died and I felt like I’d had enough death to last a while. But for LB to die, this wasn’t right, he was a fit young man, spending time in a specialist unit, with experts, to help make some life choices and changes. He couldn’t die. For the last year I’ve oscillated between disbelief and anger, and my internal pendulum has yet to stop swinging and come to rest. What Sara, Rich and family have had to face, is like the yin to our family’s yang. We had the knowledge that Dad was terminally ill, and the truly amazing support of our local hospice’s Hospice at Home service, that allowed him to die a peaceful and dignified death; LB was fit and well, his death was preventable, and those responsible have done their best to shirk all responsibility ever since. If you wanted to compare and contrast a bad death experience, and a good death experience, Sara and I would be a good place to start.

In February, before the independent report into Connor’s death was published, I was appalled to read Sara’s account of how they were being treated by Southern Health. I ended a blog post ‘They [LB’s family and friends] need to be able to grieve and let go of the pain, not be constantly poked and prodded and let down. Someone please make it stop. Now’.

A month later, nothing had improved. Worse still I’d been a key instigator in creating a social media storm around the publication of the Verita report, and I suddenly felt like if we couldn’t make progress and turn this into something good, then I’d have just added to Sara and Rich’s angst and pain. Rather than waiting for someone else to step forward to make it stop, I felt compelled to act, to climb into Sara’s virtual cave, and share her pain. This was only sealed for me when I had the chance to meet Sara and Rich for the first time in March.

As for #107days, if no-one with a remit to sort this stuff out was going to make things easier for LB’s family (and to be fair CQC were making efforts early on, but social care and providers were deafeningly silent), then I’d do my best to connect with Sara and try to make some sort of sense out of this madness. Even before the Minister publicly stated that the Winterbourne JIP (established to improve learning disability provision after Winterbourne View) was an ‘abject failure’, there was a growing consensus of such. So what could we do? We could try to improve things, get stuck in and do what those paid to do it evidently didn’t (don’t) consider their remit…so #107days was born. It emerged out of a desire to mark and witness LB’s life and death, to improve things for other dudes, to raise awareness and get people talking and sharing and collectively responding, and most importantly acting.

So what am I doing?

I’m shaving my head!

To raise awareness and funds for the local hospice, Rowcroft, that supported our family, and for #JusticeforLB. You can see more of what I’ll be losing in the video that follows:

So far I’ve raised £5,270 but I’d love to raise a little more, so please do donate if you can afford to. You can pledge any amount, and if your organisation would like to know more about how to use social media campaigning you can even pledge for a half day workshop with Sara and myself. Plug over.

I just wanted to finish by saying what a truly inspiring campaign #107days is. Each and every person who has adopted a day, or pledged an action, or shared their experience, has made it what it is. It has been an absolute honour to be involved and I’m left in awe at what you can achieve when you set your mind to it and don’t worry about who gets the credit, or the blame. I feel confident that the power of our collective, will continue to improve things for all dudes, in LB’s name. Thank you all for your support with that.

Day 20: What’s a Board to do? #107days

Day 20 was adopted by Amanda Reynolds. Amanda has a lot of experience of NHS Boards, she offered her support to #JusticeforLB early on and kindly agreed to share a post for #107days on what an NHS Board Member is there to do:

I have been thinking about Boards and their key remit a lot recently. Last year I was on an NHS Foundation Trust Board and it was a water shed year for governance and leadership. It was the year when both the Francis Report and the DH response were published. We stopped, shuddered, shook and should have changed a lot. But, did we in the end do that?

I was also very aware, like many, of the failures of Winterbourne View and wondered how any Health and Social Care Board could get itself into such a distant and unknowing place in regard to what’s happening in its own services. And now via twitter another Trust is in trouble with the avoidable death of Connor Sparrowhawk. His family and learning disability experts are making a loud noise and are rightly outraged.

So, a few reflections on what is a Board for? I have a feeling CQC, Monitor and DH are asking such questions about Southern Health right now. What is common in each case is the first to make a big noise are not the Board or the staff but the families. Is there a pattern emerging here about who are the best people to spot, and be listened to when we need to assure ourselves of the quality of the care we provide?

But, do we have to wait for a Julie Bailey or a Dr Sara Ryan in every Trust, shouldn’t each Board be proactively in charge of quality? Absolutely, as without an effectively governing Board no service can assure us it is safe and of the highest quality. But worse none of us as users of the NHS can be confident in the care it provides us and our families.

Essentially the Boards job is to govern or as Plato would have said “to steer”, BUT the Board is a collective being, a collection of Individuals who come together to govern. So each individual with a vote is first and foremost part of a unified board and an accountable individual also. These two things are not mutually exclusive. They do need to be understood as each Board member has two key responsibilities  overall responsibility for quality and a personal responsibility to act effectively and to assure themselves the organisation is well run.

If you can’t sleep at night or you are a Board member there’s lots to read that can help you understand an NHS Board and its governance responsibility better here: published in November 2012, Standards for members of NHS Boards and Clinical Commissioning Groups Governing Bodies in England and from Monitor in April 2013, Quality Governance: How does a Board know that its organisation is working effectively to improve patient care, and August 2013, Your statutory duties: A reference guide for NHS Foundation trust governors.

So, back to a Board working day to day maybe you have heard something like  “the Board decided that but I did not know the full picture when we decided it”. This is never an acceptable position for a Board member (Executive or Non-Executive) to express. Each member must ensure they know all they need to know to govern their organisation effectively. This is not a small task but a core requirement if an NHS Board is to be well led. Really important when things go wrong in delivery of quality of care as in the case of Connors avoidable death.

Prior to the recent Southern Health Board meeting it was discussed on twitter whether the Chair and members knew all the information in relation to Connors’ death. So, in the context of excellent governance and the Boards key remit this is something the chair will need to be seek to address urgently. The chair must assure themselves that non executives have the full information on this avoidable death and any action the trust has taken since. Monitor excellently outlines their understanding of a Boards remit by challenging each NHS Board to really govern by knowing not just hearing and nodding through decisions.

Quoting from Monitors report on quality governance for Boards published in April 2013: “The Board should understand the organisation and what they are being told is true, accurate, fair and backed up by sufficient evidence.”

I have to say when I read the public board papers of Southern Health March 2014 meeting I was a little disappointed that their self-assessment was not more rigorous and there did not appear enough soul searching or challenge reported within the Board for me.  An avoidable death of a young man had occurred here.

There has been a lot of focus in the media on criticising the CEO and they do hold day to day responsibility for the running of the Trust. But, it is important to realise they work to an NHS Board like all others a unified board. So, individually and collectively each member with a vote is accountable here, not just the CEO and chair.

So, if I had a chance to question Southern Board I have pondered some of the questions I might start with:

Qu 1: does each Board member understand their individual and corporate responsibility here for this failure of care?

Qu 2: where are the NEDS in the current dialogue and responses by the Trust are they sighted and signed up to all actions?

Qu 3: can each of the Board members satisfy monitor and CQC that they know what went on, what went wrong and that services are now safe today? What evidence do they have to support this view?

Qu 4: does the Trust Board understand its responsibilities to patients and families enshrined in law as part of the NHS Constitution? Has it acted on them in relation to Connors death and engaging his family?

Qu 5: After Connors avoidable death how can the public be confident that the Trust are providing safe and effective health care to all inpatients with Learning Disability now?.

It is a huge challenge to govern a health care organisation effectively and I do not place my reflections or this challenge out there lightly. Each Board needs to work from a position of development and constant review. Challenging yourself, your Board colleagues and your organisation constantly. Gaining and interrogating knowledge so the Board collectively can be refreshed and reflect on the quality of what it does each and every day.

Specifically, a message for The Board of Southern Health. You should be listening to and engaging the family of Connor here.  First and foremost to address their concerns properly but to use this feedback to assure the Board collectively that your services are safe and each patient is getting good care. So, the Board can be confident in confirming to its community, commissioners and regulators that it is governing a quality organisation.

As Toni Collett said “ The better you know yourself, the better your relationship with the rest of the world”.