I’m struggling to know where to start with this blog post, which if I’m honest doesn’t happen to me very often. I’m usually blessed with the ability to sit down at my keyboard, churn out words for a wee while and then sit back and edit it into something coherent. Today I’ve been procrastinating for at least an hour (I’ve even done the washing up) which is a sure sign my thoughts aren’t fully formed – but I want to share them with you guys, so you may have to be patient with this being a little incoherent.

Over the last couple of years life/fate/destiny/cancer/death has conspired to sharpen my focus on what really matters in life, for me any how. I’ve blogged before quite a bit about death and dying, about Life after Bobby (my Dad) and generally trying to ascertain what life is all about. I’m slowly forming a half baked theory centred around the suggestion that few people really ask the question of what is the point. My supposition is that lots of people just keep busy, with their careers, relationships, kids, grandkids, religion, material goods, holidays, whatever it is to stay busy and, consciously or subconsciously, avoid asking the point of life question. The second part of my supposition is that this may be a sensible plan, because when you stop and think about it, there are no easy answers (or I’m completely missing them).

There’s something about loss and grief that brings this reality into focus like a massive great big reality truck rolling up and parking in front of you, you can’t ignore it, or easily step around it, so you just have to wait until it moves on. In this period of waiting, of quietness, of accepting that there may be no point, personally I found a relief of sorts. If there is no point, then what do you have to lose? Over the last eighteen months or so this reality truck has parked in front of me on a number of occasions, my options have been to sit it out, do nothing, but occasionally share my experience (mostly through social media), to distract myself with work (which I’ve been loving), to distract myself with curry (Social Care Curry Club has been a brilliant distraction, and almost full time occupation, at times), to travel (which I can never get enough of) or to find comfort with those who share my pain or loss. What I’ve realised acutely in that period is the difference between empathy and sympathy.

I really hope you watch Brené Brown’s RSA Short, even if you’ve seen it before, it only takes 3mins! It starts ’empathy fuels connection, sympathy drives disconnection’ and within it she identifies 4 elements to empathy: perspective taking; staying out of judgement; recognising emotion in other people; and communicating that.

Empathy is a choice, and it’s a vulnerable choice, because in order to connect with you I have to connect with something in myself that knows that feeling.

The short goes on to highlight a brilliant take away point, that rarely, if ever, does an empathic response begin with ‘at least’. This happens when someone shares something that’s incredibly painful and someone tries to paint it a silver lining e.g. I had a miscarriage… …well at least you know you can get pregnant; I think my marriage is falling a part… …at least you have a marriage; My son died in your care… …at least other elements of our services are exceptional.

OK that last one isn’t in Brené’s video, but it is on my mind. If you don’t know what I’m referring to, I wrote a post a couple of weeks ago that explains more. It’s a month since the independent report into LB’s death found it to be entirely preventable, and since then I’ve witnessed what I perceive to be a whole heap of spin from the Trust responsible, and a remarkable online and offline connectivity, coming together to support LB’s family and friends campaign for #JusticeforLB. There are three elements to what Justice would look like, the first centres around LB and what happened; the second is more generally around those responsible for LB’s death – Southern Health and Oxfordshire CC, and the third is a much wider, societal issue around how people with learning disabilities are viewed, treated and valued within society.

So where am I going, I did warn you this post might be a little incoherent. I guess I wanted to reflect on my own personal response to LB’s death, share why it is important to me, and raise awareness amongst my networks of why I think this is all our responsibility. Years ago I came across Patient Opinion, at a time when I was quite angry with life and disillusioned with some elements of care. Someone quoted from an old post of mine this week that ‘three years ago Patient Opinion changed my life’ and in many ways this is completely true. You can read the post here if you’re interested, but the good people at PO helped me channel my anger and pain into something more useful, and help improve things in my own little way (mostly by blogging, nothing world changing but if everyone did something small….).

Four or six weeks ago I got chatting with Sara, LB’s mother, about the then impending publication of the independent review. I can’t begin to imagine what Sara must have gone through, but I can easily relate to her grief, and anger. I guess metaphorically speaking I climbed down into her cave and we chatted, we chatted LB, we chatted hopes, aspirations, grief, loss, value, labels, disability, ability, meaning. Most of these conversations happened in public using social media, although there was the odd email exchange too. I felt quite strongly that the world needed to hear about LB, about his life and death and the void he left (not dissimilar to how I felt about my Dad really). Sara has been blogging for years, and a month ago we launched #JusticeforLB together. What was only ever meant to be a twitter account and a hashtag, rapidly evolved into a movement for change.

I’ve received mixed responses to my involvement so far, where people know I am involved. A few people have been intrigued, as have I if I’m completely honest, as to what is driving me. Several people have been complimentary, really there’s no need, I think anyone would do the same if they could (I appreciate that I have the ‘advantage’ of being self-employed, so I can speak my mind) and that brings me onto the last point, several people have warned me/mentioned/suggested that I’m being foolish getting so involved and I risk damaging my fledgling business. This one is a risk I’m prepared to take, because to be blunt I couldn’t look in a mirror if I didn’t.

Two weeks ago I met Sara and Rich in the flesh for the first time. I had something equating to butterflys!! We’d been in such close contact what if we met in the flesh and didn’t like each other?! No need, any fears were allayed quickly in that regard. So, where does this leave us. This isn’t about wanting to make things better, things will never be better, there will always be an LB shaped hole in their lives, they’ll never hear this laugh again.

Can you imagine what that feels like? I’m not sure I can. That said, I think subconsciously I’ve adopted PO into my DNA, and as much as I empathise with Sara and Rich, I’m also keen to work with them to change things, and time is of the essence. This week NHS England released statistics showing that 2,577 people with learning disabilities, autism and behaviour that challenges, remain inappropriately in hospital. Most worryingly there were twice as many people admitted to inpatient units between 30 Sept and 31 Dec (n=247) as there were transferred out (n=124). Bill Munford, who has recently taken over the Winterbourne Joint Improvement Programme, has acknowledged progress is not fast enough, but this is frightening. So we need to move on #JusticeforLB and move now.

Remember there are three elements to justice, only some of them relate to the distinct situation that LB found himself in, and Sara has been explicit (repeatedly) about the excellent support she has received from Oxfordshire Family Support Network, Inquest, LB’s school, the Police, the Care Quality Commission, and most recently David Nicholson and Jane Cummings from NHS England. This is not some sort of witch hunt or anti-NHS campaign, it is however about accountability.

Yesterday was a year to the day that Connor entered the assessment and treatment unit, Slade House, where he died 107 days later. The #107days campaign was put together for a number of reasons, partly to raise funds, partly to channel the pain, anger and hurt (growing by the minute every time a new person heard what happened), and mostly to allow a collective response to making progress to bring #JusticeforLB and all people with a disability. Together we are making a difference. Join us.