Day 78: Pass it on #107days

Day 78 was adopted by Rachel Batchelor, we’ll let her introduce herself:

I’m probably best described as a ‘vocal service user’ though I have been called many other things (‘engaged and forward thinking’ was the nicest, though anything from and ‘warrior parent’ to ‘un-necessarily awkward’ via ‘overly academic’ and ‘unusually well informed’, with side orders of ‘stressed’, ‘over-complicating’ and ‘fussy’, not to mention ‘attention seeking’ and my all time favourite ‘probably bored’ (Seriously? if ONLY I had the time).

I’m  sure you get the picture, maybe its one of those nice little snap shots that so many of the pros mention. You know the kind of thing ‘I just need a snap shot of things for the file’, one taken when they flit in and out of peoples lives, creating paper work and often not much else.

One of the places I get my ‘unusually well informed’ perspective from is a long relationship with the Tizard Centre. As a result I often read blogs and articles posted on the group facebook page, a useful weather eye on what’s-what. It’s where I first read the My Daft Life blog, and the awful chain of events described there.

As has been said by many others in the past weeks, we get used to things being crap. It comes from having to hit the ground running and deal with other people’s system failures, organisational re-structuring, policy shifts that change with the wind direction, endless blah-blah chains of words which acknowledge little and promise less, ‘the usual’, all while trying to manage complexity and just get on with things in general. Even with the whole ‘used to things being crap’ as a starting point, the story of LB and his family is so shockingly dreadful that I find it hard to articulate my response. I don’t usually join protest campaigns, but this one is different.

This is what Rachel has been doing:

I offered to raise awareness of the campaign by discussing the case with 107 people and to ask each of them to discuss it with at least one other person, to pass it on. It has resulted in some complex conversations, some brief discussions, and one or two people who simply stared in disbelief that a death had occurred in specialist setting, how? HOW? could such an awful event be possible? Several people queried how it was possible, given Winterbourne View that things were still so bad (I still can’t give a coherent or printable answer to that question). One or two friends who had seen press coverage of LB’s case said that they were struck at how similar the various systems failings were to other cases they knew about, though thankfully those cases are without fatality.

All in all an interesting set of conversations which fell into two broad groups, those who felt shocked that something so appalling has happened and those who quietly reflected that the deeper shock is, the realisation that it is remarkable that it doesn’t happen more often. That gives pause for thought, doesn’t it?

I was lucky enough to raise some of the issues in the campaign with a group of students undertaking specialist training in Autism. I tried to illustrate my points with some of our own experiences, to draw a parallel with how easy it is to ignore family expertise, the corrosive effects of professional turf wars, and how much time and resource is spent getting things wrong. How much energy is spent making parents and families ‘the problem’ while over simplifying the needs of the person at the centre. One of the questions we get asked most, is ‘and what single thing do you think is most needed? hmmmm?’ to which the only polite reply has to be, ‘for people to stop thinking there is a single answer’.

If though, for the sake of argument, I could try and focus on a single ‘what is needed’ issue, here it is. Communication. Why is it that those who are willing to learn fluent jargon (specialist terms for communicating with colleagues) have no sign language or PECs (specialist skills that can be used in many circumstances). Working with a client group who are at the very least, likely to have communication difficulties would seem to call for good and useful communication skills. So, my one simple idea is could all professionals learn to recognise and accept communication differences and move on? The training exists, PECs, Signing (BSL, Maketon), Somerset Total Communication are well researched and available. How many challenging behaviours are due to communication issues and fear?

It may, also help all those involved in a persons care to LEARN TO LISTEN whether that’s to families, colleagues from other disciplines, and importantly, to the person at the centre. Fill in those partial snap-shots into something more coherent.There is no single simple solution to complex situations so at least acknowledge the complexity. However we do know what doesn’t work and we do know what does work, Jim Mansell wrote it all down in clear, informed language for all to read. So maybe, here’s another simple idea, read the Mansell report and just implement it?

We might be used to things being crap, but there is no reason why we should accept that as an unchangeable situation. Please pass it on.

Rachel also pointed out that as the D-Day commemorations happen this week it is probably as good a time as any to revisit the Universal Declaration of Human Rights, the global response to the horrors of two World Wars, the document which ultimately underpins all our equalities legislation. Rachel’s view was that more people should read it, especially Article One, which states ‘All people are born free and equal in dignity and rights’.

Right to Life

I completely agree with Rachel, but you really need to read the whole thing, and Article Three would appear quite relevant to much of social care and health support for people with learning disabilities, more on that from Lucy Series here. Now, don’t forget Rachel’s request and please Pass It On.

Day 37: When care goes missing #107days

Today’s post was written by Sally Donovan who adopted Day 37 to share a blog post on absent care and compassion.

Last summer I shared a table on a train with a man I’d never met before. It was a quiet carriage and he wanted to engage in conversation. I’m ashamed to admit that at first I was a bit reticent. I was travelling with my two children and between us we are used to attracting a bit of attention. I didn’t want to risk attracting any more.

He was a confident man, an academic who was interested in people. He immediately engaged with my children and was unphased by them. He was someone I’d have liked to have had a proper, loud conversation with, but we were in the quiet carriage and people were tutting.

I can’t remember how we got on to the subject, but he shared with me his experiences of visiting his mother in Stafford Hospital. As he described it, her care had been both severely lacking and delivered with conscious cruelty. He had been left unable to explain the lack of humanity in those supposedly caring for her and other patients and in those whose job it was to safeguard patient safety and communicate with the relatives of those who had suffered. What he described was not only an absence of care, it was planned cruelty and those who dared to argue otherwise were represented as being misinformed, unhinged and working against the common good.

Misrepresenting and discrediting those who act as advocates for vulnerable people is a theme that plays out with depressing frequency in the health and social care systems in this country. We the parents, the carers are misinformed, we are wrong, we are hysterical, we have got things out of perspective, we are awkward, we are standing in the way of normal service, we are disloyal, we kind of deserve the life we have.

Sara, the mother of LB (Laughing Boy) has found herself in this situation. I started following her blog just as LB entered the assessment unit where he would die either from ‘natural causes’ or from lack of care, depending on (in my non-expert opinion) who pays your wages. I was attracted to Sara’s blog because she writes with clarity, humour and compassion and because her photographs are lovely. Families of vulnerable children and young people get used to things being a bit crap, a bit worn out, a bit out-of-date and so it was refreshing to see something presented with style and grit. Little did I know that what I was following was a human tragedy about to unfold.

One of the ironies of health and social care is that when a tragedy takes place, a son dies, a mother is left unfed, the horror is then often made so much worse. Firstly, it seems that those with a professional role to play find it difficult to appear to care. They may care, but what matters is acting like you care, demonstrating it. Where ‘care’ is demonstrated it is around spurious things like reputation, PR and ‘patient confidence’ and I guess probably careers and budgets and funding. Underneath the guff, no matter how much of it there is, is the waste of a life and a family left in grief and loss. When the family try to get answers, the ‘bureaucracy’ effectively then tortures them by locking up communication and acting defensively in bizarre and cruel ways. It has systems which don’t lead anywhere, tests which cannot be passed, the simple and obvious is made complex and cumbersome until everyone apart from those grieving have all but forgotten what the original tragedy was. It leaves one wondering when personal morality became so negotiable.

Strong men and women, who lead a whole other life outside being parents and carers, who are perhaps professionals, experts in their field, well-practised, well-respected in what they do are stripped of all that as though it is of no import at all. Take off your robes of experience, your education, your talents, your knowledge and leave them in the bin at reception. From hereon in you are a nobody, you know nothing, you stand for nothing.

I was brought up to do the right thing, to tell the truth, to respect authority and to generally think the best of other people. I thought that ‘society’ generally acted in the best interest of its citizens and if you found yourself outside its protective walls then it was probably your fault.

Some years ago I went to the NHS for help. Our adopted child was displaying some extreme behaviours and to me (a non-expert) and to our Social Worker, was clearly traumatised and in need of some kind of therapeutic intervention. I sat in a crappy reception area, not yet realising that I had left the best of me in the bin at the door. We were seen by a consultant who either discredited or ignored almost everything I said and who steam-rollered over issues I had expressly asked him to take care over. In my opinion (as a non-expert), he was an egotistical, stupid, know-it-all, know-nothing rude little shit of a man and his conclusions were sloppy and entirely wrong. I walked out of that crap hole crushed but nevertheless resolving to never ever seek the help of the NHS on matters of child trauma and adoption ever again. I should have complained, but those who have a caring or an extra parenting role will perhaps understand why I didn’t have the energy to do so. An earlier visit to our GP had resulted in the word ‘depression’ being used. Not only was I ill informed, I was mad too. I had fallen through the protective walls of society. It had been incredibly easy.

Since I’ve come out of the fog of exhaustion and secondary trauma that can come with caring for children who are deeply traumatised by their pasts I have connected on social media and in real life with many parents and carers of children and young people with additional needs, including Sara and have discovered that many of us find ourselves living outside the city walls.

How does this happen? How do job-holding, tax paying, law-abiding citizens, advocating on behalf of their vulnerable loved ones find themselves cast out and their loved ones on the receiving end of poor quality care?

Here’s my (non-expert) take on it.

  • Experts and I guess I mean health and medical experts in the broadest sense here are designed to give information and not to receive it. Some of them are egotists. Egotists are not that great at valuing the talents and knowledge of others. It’s a classic power game – I have the power over you, you are the recipient of my wisdom.
  • The NHS is apparently sacrosanct and staffed not by fallible humans but by angels. Criticise its angels at your peril. They can do no wrong. Wrong is in the eye of the beholder. This lack of critical thinking around any service is dangerous.
  • Without strong and challenging leadership, tribes flourish in enclaves in health and social care, just like they do in other organisations. Tribes look after their own and don’t like to be encroached upon by ‘outsiders’ (the vulnerable people they are meant to be caring for and their parents). ‘You are not one of us. This is not how we do things around here. You are not welcome.’ Some of the members of the tribes are poorly paid and poorly educated, but I’m not convinced that’s an excuse for cruelty. Tribes operate under their own rules and codes of morality where it kind of becomes acceptable not to care and not to do things properly. If you’ve ever worked in a big organization, with lots of departments, you’ll know what I mean. Sometimes groups ‘go tribal’ because the organisation they are part of doesn’t value them. Sometimes it’s because its members enjoy being awkward and lazy and moaning about everyone else and they all egg each other on. They need to be encouraged to find alternative employment. When a tribe is in charge of booking out conference rooms it is annoying. When it is given responsibility for caring for a vulnerable person it is dangerous.
  • There is no ultimate case to answer. When a young person, or an older person dies unnecessarily in the care of the state no one is in fear of being sat in a dock and they should be. When the state fails to point the finger it is tacitly saying it doesn’t take cruelty or lack of care that seriously. Threat of legal action focuses the mind when morality and care have gone missing. Those who disagree with me claim that the threat of legal action would only encourage cover ups and discourage whistleblowers, like the current state of affairs doesn’t.
  • When vulnerable people are excluded from society to such an extent that ‘normal’ people never have to come into contact with them, they become something ‘other’; annoying to care for, or dangerous. It becomes acceptable to treat someone who is seen as somewhat less than human with a lack of humanity.

I asked the man on the train what if any conclusions he had come to about what causes some people to act in such a careless and cruel way towards those in their care. He shook his head. Everything he had thought he’d understood about people and compassion and care and morality had been over-turned.

You can read Sally’s blog here.

Screenshot 2014-04-24 03.18.36

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).

JennaP1

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.

JennaP2

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.

WeLDNurses