Day 66: Woodcrafting buses #107days

Day 66 was adopted by Sharon, Heather and the Oxford Woodcraft Folk. They shared LB’s story with their young people on an evening a week or so ago, this is what they had to say:

Woodcraft folk is the cooperative children and young people’s movement. In Oxford there are grass roots groups for young people age 3-18+. We are committed to promoting inclusion, respect and social justice.

The young people of East Wind Pioneers (aged 10-13) were moved by the #JusticeforLB campaign and were able to show their compassion and support through these drawings. We hope you enjoy them!

It has been particularly heartening to see the contributions, support and compassion of young people in today’s activity, and yesterday’s from Ohio, and in several other days. We live in hope that they will grow into young adults who live in, and insist on a more fair and equal society, but we really shouldn’t wait and leave it all to them, we need to keep improving it now.


Day 42: A day in the life of… #107days

As I sat drafting this post this morning I was reflecting on how strong the grass roots/frontline/on the ground response has been to #107days and #JusticeforLB. Amongst the families, carers, dudes, researchers, advocates, activists and academics who have stepped up, along with many more, there is one professional group who (personal view here) have really risen to the challenge of learning from what happened to LB. That’s not to say they’re the only group, and I’m not singling them out as favourites, rather acknowledging that as a professional group, nurses of people with learning disabilities, could have responded with anger, or shame, or disbelief, or avoidance, or many other ways. Instead many learning disability nurses have embraced our campaign and fully supported it.

On a day where poor care of people will yet again be exposed by Panorama, I wanted to just acknowledge how heartening it is to know that people working in these roles do care. That doesn’t take away from the abuse or neglect demonstrated by a few, at the frontline (and personal view again here) or at CEO level, but it is worth remembering the many, many people who are providing good care and seeking to learn from LB’s death. Tomorrow night is the second of our three webchats with @WeLDNurses, this one focusing on preventable deaths, more info here. Join in at 8:30pm using the hashtags #WeLDNs and #JusticeforLB.

Day 42 was adopted by Phil Brayshaw a Registered Nurse for People with Learning Disabilities. He has written this in memory of LB, in the hope it encourages at least one person to do one thing differently. Phil also sends his heartfelt love to those living with LBs loss. So, over to Phil:

A few years ago I was talking with a mother of a disabled child and I asked if her daughter had any siblings. “No, she doesn’t have any siblings. She has brothers and sisters!”, she said. Ouch!

It’s a good point though isn’t it? There is something really interesting about how people use professional language to talk about everyday things. As part of NHS Change Day, I made a promise to think about the way I talk about things and the way I write them down. I said I would think about how I might do things differently. I have written this blog to share a bit of my thinking so far.

I want to say something about how professionals write things down. I will start this part by sharing a day in my life; I have tried to write this as if I am a learning disability nurse looking in. I will then go on to tell you about what I have learned by doing it. I have been writing nursing notes for years, but this is the first time I have had a go at writing my own so please bear with me…


7.30am Alert, awake, orientated to person, place and time. Complied well with personal hygiene routine, and mouth care. Required some verbal prompting with washing, dressing and elimination.

8.00 – 8.30am Independent travel, via public transport, to work placement.

8.30 – 9.00am Interacted well with peers; some evidence of task avoidance. See also fluid intake chart.

9.00am Team meeting – Followed spoken commands reasonably well and responded appropriately – demonstrated some restlessness and inattention at times ?ADHD.

12.00 – 12.30pm Lunch. Reported good appetite and ate well.

12.30 – 18.00pm – Work placement

2.00pm – Complained of headache. 4 on a 1-10 painscale. PRN paracetamol self-administered – no difficulty with swallowing.

3.30pm Reports pain is now 1 on a 1-10 painscale.

4.00pm Demonstrated some oppositional and defiant behaviour towards his peers.

6.00 – 6.30pm Independent travel, via public transport, to residential placement

6.30 – 7.00pm Tea. Reported good appetite and ate well.

7.00 – 9.00pm Watched TV in shared area. No other reported difficulties.

9.00 – 10pm Read quietly

10.00pm – Self- administered prescribed medication 20mg Citalopram. Settled well

Signed: A.Nurse RNLD


What does all of this mean?

If a professional wrote about my day, it might look something like this. Although these notes tell you something about me and my day, it is not really what I want to say (I probably wouldn’t even want you to know some of it!) and it is not how I would say it. There is also something about the language that seems strange to me and I wonder why this is. Would it be o.k. to say “my daughter told me to hurry up in the bathroom” instead of “required verbal prompting”? and maybe ‘my’ restlessness says more about the length of the team meeting than it does about me?

It seems to me people with learning disabilities are sometimes judged more harshly than other people. Sometimes small things can get out of hand or they are written down very negatively. For example understandable restlessness in a meeting can be seen as a character flaw or as a symptom of an underlying condition; or a small professional disagreement with a respected workmate can become “oppositional defiance”. There is a real danger in this as I have seen entries like this copied from report to report and follow people for a very long time.

I am not arguing against professional standards in record keeping; as nurses we are encouraged to use professional language and it does have its place. Nurses (and other professionals) have had training about what is o.k. and what is not o.k. to write in notes. We write notes to say that we have done what we are supposed to do; they are not meant to be a diary of people’s lives. They are intended to stand up to professional scrutiny.

Sadly this means the notes we write about people don’t always say very much about them or the things that are really important to them. I suppose clinical notes are about what is “important for” someone rather than what is “important” to them. I think there is always room for making things better, but even if we can’t change the way we write our notes we can be more aware of how writing them shifts the way we think about the people we are supporting.

I do wonder if we could do things differently, for example could we use easier words to help people understand what has been written about them? Could we ask a person or their family to sign their own notes or ask them what to write in them? Perhaps we could ask someone’s advocate to read through the notes to make sure they say what is important to the person? I don’t really know, I am not an expert in this, but I guess it’s worth thinking about?

The way we talk or write things down is not always about the person and is quite often about complying with systems. If we are not careful it can be stop us seeing the person and only seeing the patient. I was thinking of a recent referral I had to see my own GP, I hope it would read like this:

I would like you to meet with Phil, he is a really nice guy. He is usually very positive about things and has a good sense of humour. The first time I met him he made me laugh out loud. At the moment Phil is finding things really difficult…

But I think it probably read more like this:

Could you please see this significantly overweight 40 year-old man who presents with indications of ADHD, low level OCD and intermittent depression and anxiety.

What we write about people frames the way we think about them. If we write with more care and compassion, and stay close to people’s own understanding I think it can only help. Nursing notes are a legacy of our work and of someone’s time in our care, it only seems right that we write them with genuine respect.

A couple of disclaimers…

Well first there is all the usual stuff…these views are my own and not necessarily those of my employer; and second…

Although I really was awake at 7.30am this morning, I was definitely not alert 😉

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.

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