Day 93: 107 London buses #107days

Day 93 was adopted by Steve Hardy, a Consultant Nurse who got in touch early in our campaign to offer support, connect us with WeLDNs and many others. We are really grateful for his enthusiasm and leadership, at a time when many working in this field sank down in their seats a little, Steve stood up and ensured his voice was heard. Today he is doing a very special challenge for #JusticeforLB. Here’s what and why:

I can be a little obsessive as I receive daily Google alerts on news stories concerning people with learning disabilities. One afternoon earlier this year an alert came through with the Investigation Report into Connor’s death. It’s hard to describe how shocked I was. I then tweeted the story and found there was a growing movement across social media to find justice for Connor.  I have worked in the NHS for people with learning disabilities for 25 years and the NHS is somewhere that any individual, with a learning disability or not should be safe.

I want to do something personally to promote the campaign for #JusticeforLB, for Connor and his family and help make sure that nothing like this ever happens again.

Due to Connor’s keen interest in buses I have chosen to complete 107 bus journeys in one day across London. I will drop in on some services for people with learning disabilities along the way to spread the word.

Steve has written this guide to share with people on the day and he looks like this, so keep your eyes peeled for him:

Steve will be tweeting about his journeys and you can also sponsor him if you’d like to make a donation here.

Here’s Bus One of the 107:

Day 71: WeLDnurses finale #107days

Day 71 was the day of our third and final twitter chat in conjunction with WeLDNurses.

I’ve waxed lyrical about them before, and am going to repeat myself again, because sometimes we all need to repeat ourselves several times for people to take notice:

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.

That was the introduction from Day 43 Death by Indifference, but they also previously adopted Day 15 for Epilepsy Management. Today’s chat was focused on Working together with families, carers and people with a learning disability. 

As has been the case with each of these chats there was a real energy, frenetic pace in fact. An honest and open discussion between those working in learning disability services, especially learning disability nurses and educators, but also some social workers, some students and of course a large number of parents, carers and JusticeforLB supporters who I can’t neatly label.

You can read a full transcript of the discussion here. Key themes were around listening, really listening, starting with the person, how to handle conflict and an acknowledgment that there really is no such thing as a ‘difficult family’, simply people worn down by an unresponsive system.

The characteristic of these chats has been the contribution, the openness and of course the banter. I for one will miss them, although hopefully many of us will continue to join in with #WeLDNs chats, long after #107days.

Day 43: Death by indifference #WeLDNs #107days

Today was adopted by @WeLDNurses for the second of three web-chats as part of #107days campaign. The first one took place on Day 15 and focused on epilepsy management; it was fast paced and brilliant, personal learning points are make a brew before the start and don’t worry too much about trying to keep up! Just jump in, as and when you can. The chat was facilitated by Sam and there is a transcript of the chat here.

Today’s chat takes place at 8:30pm and is focusing on death by indifference. If you visit the chat page you can read more about the background, and there’s also a link to a WeNurses guide in case you’ve never joined in a webchat before. There’s a great introduction by tonight’s facilitator, Sally, and I’ve cherry picked some of it for this post:

In the wake of Winterbourne View, South Staffs and the delivery of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) the question on the lips of Team @WeLDNurses is: How Many More Times Do We Have To Do This Chat?

If people with learning disabilities are dying avoidably in specialist services, do we need to start there in terms of improving safety and identifying early warning signs and how we respond to them?

I have no doubt that the vast majority of health professionals want to do their best for the people in their care, but there have been too many recent failures to ignore. We have to take action. Now.

Our chat on Thursday will be discussing ways in which we can all take action, as individual practitioners, through organisations to primary care, to commissioners and secondary care leads and of course third sector providers.

We hope you can join us to share your views and experiences, and to discuss how we can all take action to avoid preventable deaths of people with learning disabilities.

Yesterday, Day 42, was adopted by Phil, a Registered Nurse for People with Learning Disabilities, and you can read his post here if you missed it. I’m going to take the liberty of repeating myself and the intro here:

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. 

Please join us, and @WeLDNurses, professionals who are taking responsibility and seeking to improve things, tonight for our chat. Thank you #WeLDNs #JusticeforLB 8:30pm.

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…

25/04/2014

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 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).

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.

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.