Thursday, 11 February 2016

Turning Ideas Into Action

There is a really electric feeling at that point for the first time ever we take an idea and try to turn it into reality. It's electric the first time you do it yourself, even if a million people have already done it, because you prove something to yourself. It's called learning. And when we do exactly the same thing for the first time ever it's called innovating.

And lots of people have taken the ideas in my recent post about maximising choice and control in end of life and are beginning to try them out out too: real innovation happening right now!

Pioneer of person centred thinking and planning Helen Sanderson followed the simple rule in person centred approaches: "Try it out with yourself or your family first, because the closest thing to experiencing using it in real life, is experiencing using it in real life".

So she sat with her mum Carolyn, and helped her own plan for end of life.

She had already started a plan, so they worked together on it further: Here's what they came up with together.
To me, you have captured the essence of a person centred practice as soon as you can sit down with your mum and do it!

Helen also pointed out something: It's quite routine for people like our mortgage advisor or our solicitor to ask us what our plans are for the end of our life, what will we do with our possessions? How will we pay for our funeral? Why is it therefore so rare that nobody medical asks us about our plans for when we die? Could this be something our GP does? Whose job could it be?

We also encouraged as many people as possible to try the new formats out at their own homes, hospices or workplaces, or indeed with their own friends and families. We will have a big online feedback session soon, using the hashtag #maxeolc. Don't forget to use the Advanced Care Planning 'Fink Cards' as a way of opening up really good conversations around end of life.

It's not just in the UK. I sent out an electronic version of the Daily Mail article to my colleagues on the board of The International Learning Community for Person Centred Practices. Some of them have felt driven to action too!

Laura Buckner said "I have shared your work online.  I recently shared it with my cousin (end-stage lung cancer).  I will have lunch next week with a cycling buddy of mine who also happens to be a hospice chaplain; I specifically want to share your work with him and talk about how we can collaborate to bring this to the many patients and their families he supports.

and Michael Smull said "Great article.  I hope it inspires many others to do the same.  I have been sharing your planner here in the US.  I have sent it to some of the federal officials I know and I was showing it the people in charge of social care and health in the Minneapolis area yesterday.   I hope we can help it make a difference here as well"

So please feel free to become part of this process of innovation. Pick up the tools and try them out in your own workplace. Look out for further blogs on this topic, not just from me but from leaders in the field of end of life, and be ready to join in with the twitter conversation #maxeolc when we announce the date!

Sunday, 7 February 2016

How Simple Should A One Page Profile Be?

It was great to wake up this morning to find an article about the End Of Life Timeline Planner published in today's Sunday Mail.

Bringing ideas from person centred approaches developed over years by great teachers like John OBrien, Michael Smull and Helen Sanderson into the field of End Of Life Care is clearly receiving an immediate and warm response.

Personalisation in healthcare is an idea whose time has come, and person centred thinking is a key way to help deliver it.

What I would really like people to understand is that the values and approaches brought together in person centred thinking apply to all human beings: We all have gifts that we need to express, we all have hopes and fears, we all have things that are important to us, and we all need support. As a human being facing the end of my life, it is becoming important for me to make sure that people around me understand what makes good support for me, and this is the purpose of the planner.

Person Centred Thinking tools have been expressly designed to be simple things. If we can keep medical jargon out of the way, we can find ways to help people have important conversations about what matters to them. I've found Fink cards are brilliant as a way of generating rich and deep conversations about topics we might normally shy away from.

My worry about the timeline planner is that it is almost too complex, as it has no less than 25 fields to complete. Thankfully Helen Sanderson has shown us how it can be easily simplified further by making it into a number of consecutive one page profiles.

Of course not everybody agrees that simpler is better. Human beings are deeply complex creatures. Can we really sum up in one page the essence of what is human, when it took Tolstoy and Proust thousands of pages, and they still didn't fully explicate it? Is it actually an insult to the person to imagine that this is possible? One page about your whole life? One page about a precious human personality? Is that all?

I think it comes down to understanding what the purpose of a person centred thinking tool actually is:
It is a way of helping us gain choice and control over our lives in difficult situations, at times when it's very easy for the medical machine to grind over what really matters to us.

So we need simple ways to express what we feel is most important to us, and what is the very best support for us, complicated jargon is out. Having to fit everything into one page forces us to think about what is the very most important. It can be a harsh discipline. Michelle Livesley is somebody who has thought hard about what makes a one page profile work: she is clear that they need to be absolutely specific about what makes good support, and they need to be assertive: if something is very important to me, then it is not optional. It MUST happen.

So I'm arguing that the format of a good tool is very simple because keeping it simple helps the person and their family write it well.

And a one page profile is useless unless it transfers its message quickly and efficiently to care staff who may have little time to read through documentation. It has to be easy to read as well as easy to write.

It is a tool to be used practically in everyday situations at end of life. Making it easy for care staff to understand and use is just as important as helping the person and their family to write it. In my final days, I need my wishes to absolutely clear to everyone involved in my care, without ambiguity and vagueness. The simpler and clearer I make it, the less room for misinterpretation.

I've sat in committees that have tried to design good tools. "Have we covered xxx?" is the deadly question. Gradually tools grow like weeds from something beautifully simple practical and useful into tortured monsters of complexity. And every time a new layer of complexity is added, a little of who the person is is lost.

So I find simplicity beautiful for a reason. Simplicity is practical. Simplicity forces us to think of what is most important. Simplicity makes tools easier both for the person writing and the person reading. Simplicity is strong. As Leonardo Da Vinci said "Simplicity is the ultimate sophistication".

Sunday, 24 January 2016

Press Coverage for People Thinking Action

In recent weeks the number of people coming to read this blog has shot up.

It really began with my post on spending Christmas in St Catherine's Hospice and it has continued with my posts containing templates and ideas for personalising End of Life Care using person centred approaches.

My posts have been featured by Blog Preston, and on Monday 25th January there will be a feature by Aasma Day in our local paper the Lancashire Evening Post.

I'm not sure whether it will be online, so at the moment the only way you can read it is get your cash out of your pocket and to buy the LEP!

I'm getting my nephrostomy tomorrow, so reading this article should cheer me up!

Photo by Sarah Walker of St Catherine's Hospice

Thursday, 21 January 2016

Nephrostomy: What works and what does not work?

Last week I had a procedure to insert a stent into the outlet of my right kidney, to allow urine to empty freely into my bladder. I needed a stent because my tumours have clustered round this outlet and basically clenched it shut.

I know the urologist who attempted this procedure did his best for me, but he couldn't manage it. He said he had tried for half an hour, and could not even get dye into into the outlet because the grip of the tumours was too strong. Because it is so tightly gripped, it's unlikely that they'll be able to get a stent in from the other direction either.

The stent procedure failing meant I had gone through a total anaesthetic and quite a painful few days recovery for my bladder and urinary tract, for no outcome. I did feel disappointed.

So now the alternatives that are left for me are either a nephrostomy, or to do nothing.

A nephrostomy is "an artificial opening created between the kidney and the skin which allows for the urinary diversion directly from the upper part of the urinary system (renal pelvis)".

The MDT that met and talked about this (in my absence!) decided it was definitely the best thing for me.

I like to think things through for myself too. Ultimately it's my body and me who has to make a life-altering decision like this, so anything that will help me with this is useful.

Think About Your Life has a whole set of tools that can help with the decisions that affect people when they have cancer and other life altering conditions. Another good source for tools is the 'Living Well' document designed by HSA and Lancashire County Council.

I decided to use the person centred thinking 'working/not working' tool from 'Think about Your Life' to think about what works and doesn't work for me about having a nephrostomy.

Here are my own reflections:

I've shared my thinking here to show how the tool works. Using it is helping me come to terms with the idea of pushing a plastic tube into my kidney and then walking around with a bag of urine for the rest of my life. It's not an attractive prospect I agree, but on balance it's far better than the alternatives, and I have some positive actions to follow up.

Other actions I'm taking are to seek out other people with nephrostomies, I hope there is a really good facebook group that provides support, similar to the way 'Get Your Belly Out' gives big confidence to ostomates with ileostomies and colostomies. Let me know if you've come across anything like this!

Tuesday, 19 January 2016

Maximising Choice and Control in End of Life Planning

Let's make it clear that I have no intention of dying for as long as possible into the future!

I intend to take every opportunity I can, despite my stage 4 metastatic bowel cancer to live and enjoy life. If a chance comes up for more chemo or a clinical trial, I'm going to take it.

However, I also have to be realistic about my condition and where it's likely to take me. I have quite an aggressive cancer that has mutated in unexpected ways. I may have years, in the worst case scenario it is just months.

Of course it's hard to pin down how fast or slow the process of my death will be. Prognoses are notoriously unreliable and should be treated with caution, as rough guidelines rather than carved into stone. Nobody should get hung up on prognoses, and if anything, they are a challenge to go out and live your life as best you can! It's already clear to me that good planning helps people live as well as possible until they die.

So I've been reading about and talking to people about 'End Of Life Planning', which I've found out involves a whole range of documents. I've been given packs full of quite daunting legalistic documents, that I feel I would need support from professionals to complete because of the difficult language they use. However, I also got hold of some great End Of Life 'Fink Cards' made by Sarah Russell and Helen Sanderson. These are a much easier way of starting a conversation.
An example of one of the Fink Cards

You can sit with your family and take turns to pull out a card, and then have a conversation about the question on the card. It works out you might only end up discussing two or three of the questions, as the conversations can quite quickly become in depth and cover lots of ground. The first time I tried this with my wife, we had been talking about the very first card for about 20 minutes, and it felt like we were really getting somewhere, then my phone rang: it was the hospital who needed me to come back in for another scan! I felt this showed how easily medical priorities can interrupt our personal priorities.

I have a history of working in Person Centred Planning and Thinking which is all about finding ways to enable the person to put their own most important wishes into the way they are supported, so that what is important to them actually happens in their lives, and they are supported in a way that is consistent with who they are. I was also pretty interested in the questions Atul Gawande has been asking about the things people really need to have conversations about at End Of Life, so that their wishes are truly heard.

I thought to myself, that, from my own experience, there must be simpler, more person centred ways of creating and capturing information from conversations about our wishes for the end of our lives. Simpler ways that would be more led by the person themselves, and involve their family and closest loved ones as the key decision makers and information gatherers.

My blogging about the possibilities of creating something useful at end of life was timely because it reached out to other people already thinking about this, including some of the area's leading academics,  hospice providers and innovators in health and social care. These people are keen to try out different formats to see what will work best for people.

So I jumped in by creating a grid with a few important questions down the left, and a timescale going across to see whether it would work for me:
Max Neill End Of Life Timeline Planner

In a way I see this as a very first attempt. I have lots to add and change. I also think the different headings might be tweaked and changed, although I do think they are 'open' enough to contain a lot of what is most important to people at end of life, and much of what Atul Gawande was keen to capture.

The biggest problem I can see with my format is that it has 25 boxes! The very best tools I've seen in Person Centred Thinking have many fewer, like Michael Smull's "Important To/Important For" or Helen Sanderson's One Page Profiles. Such a 'big' tool might be too challenging to attempt all in one go, and might be just as daunting as some of those legalistic documents.

I passed this grid over to Helen Sanderson, who worked on how it might work as a one page tool. She has taken it and done quite remarkable things to it and actually made it into a series of one pagers to reflect how things change over time. Here's a couple of examples:

1 page on my wishes: When I have months to live

One page on my wishes: When I have weeks to live

This kind of brilliant simplicity might offer people a much easier format for their discussions, which they could combine with conversation starters such as Fink Cards. I can see that I still need to do plenty of thinking, and add much more of my own detail in the different headings, but this may be made easier for me and my family and friends by using this cleaner, less crowded 'one page' approach.

So as far as I'm concerned this is a work in progress. I'd be interested in people's ideas about getting the questions and headings exactly right. A group of us (Helen Sanderson, Sarah Russell, Sharon Hudson and Philip Ball) kicked the various formats around and speculated about how they might be tried out and improved in a practical and invigorating online discussion.

Online fun

We'd love other people to get involved and 'crowdsource' ideas about how we can maximise the way we gather people's end of life wishes so that it works for people and can be led by them,  rather than being a 'top down' process dominated by the professionals.

Also Sarah Russell is going to blog soon about how these ideas for formats fit in with current research, legislation and best practice at end of life, and we will also be bringing the discussion to twitter so that lots more people can join in.

Watch this space as we'll soon be announcing the date for a "Twitchat". We want to maximise the way people can express their wishes for their end of life care, so the hashtag we'll be using for all these discussions is #maxeolc. A twitchat is a chance for anyone to join in!

I would be really pleased if readers of this blog would pitch in with your own experiences of good and bad end of life care, and with your own ideas of how we can create planning formats that really work for people.

I know your views and experiences will make a difference!

Saturday, 9 January 2016

Preston: A Diverse, Welcoming, Neighbourly City?

I've lived in Preston for a good part of my life.

I came here as a very young child, living in the Avenham area, and going to Frenchwood school.
We moved away, but love and work brought me back here when I was in my early 20s. I've been living here ever since, first in Avenham, then in Broadgate.

One of the great things about Preston has always been it's diverse communities. Lots of different people have come here ever since the Industrial Revolution and it's made the city a real melting pot of cultures and identities.

I live on a very short street, but we have many religions, ethnicities, cultures and lifestyles all as neighbours, and all getting on pretty well.

And I'm fascinated (even as an atheist myself) that the area where I live has so many spiritual identities. We have a truly beautiful Hindu Temple with carvings that people should come from miles to see, a couple of fine churches, at least one mosque, the Vajravarahi Buddhist Centre, it's only a short walk to where the world's first Mormon Baptisms took place in the River Ribble, and even our river itself was worshipped in ancient times as the embodiment of the Celtic Goddess Reigh Belisama.

So when I saw the news that the English Defence League, a badly organised rag tag of soccer hooligans, loners and right wing racists are planning to come here to Preston to demonstrate, with the intention to stir up trouble against my Moslem neighbours, I was quite upset.

The EDL claim Preston is facing 'Creeping Sharia', that Deepdale is a 'no go' area for non-moslems (as mentioned by Donald Trump) and object to a new mosque in Grafton Street.

I see not a shred of evidence of  'Creeping Sharia'. I do know that my next door neighbour is a moslem, and he is a good neighbour who brought round some delicious food (iftar) to us during Eid.

I live near Grafton St and see no good reason why my neighbour should not be able to worship in a modern clean comfortable space.

I really would not like to live in the unimaginative kind of Preston the EDL advocate. A monoculture where anything foreign is banned, where thought is regulated through one narrow grey channel, and where the thuggish boot crushes any dissent. A town where neighbour is suspicious of neighbour, where idle pieces of gossip become reasons to intimidate and assault.

Last time the EDL demonstrated here they had a pitiful turnout. They were met by a well organised disciplined demonstration of local people led by the local Preston Trades Council. Despite this the EDL behaved appallingly and got away with throwing coins and other missiles at the counter demonstration. A friend of mine was there, she said " when the EDL demo was in Preston last time I was in town in the morning, the atmosphere was not nice to say the least. It was very scary and intimidating. Police all over and other groups too. It was a dark day for Preston". Lets hope the police and council don't allow the EDL the freedom to break the law like this again.
friendship between people of different religions is nothing new!

This time I hope the demo against the EDL is even bigger. Here's an invitation from local trades unionists:

"Preston Anti-Fascist Rally
Preston and South Ribble Trades Union Council, in conjunction with Unite Against Fascism, are calling on all affiliated trade unions, community and faith groups to come together and oppose the planned “English Defence League demo” on Saturday, 20th February, 2016.

More details will follow, once the situation on the ground becomes clearer.
Yours in solidarity
Chris Lomax
President, P&SRTUC"

If I were well enough I would attend. But I think as a community or set of communities we need to do other things as well. We need to start making more conscious efforts to make links across cultural and ethnic divisions - to meet and get to know each other as individuals and organisations. Lets find ways to share the best of our cultures and build new friendships, so that when the next set of neo-fascists come along trying to spark off racial and religious tensions, they have no leverage to prise apart our different communities and set us against each other.

Let's make sure Preston continues to be a great place to live and work, for people of every background, for us and for our children.

Thursday, 7 January 2016

Learning Journeys and Justice for LB

Max Neill, Dan Goodley, Rebecca Lawthom and Katherine Runswick Cole

This collaborative blogpost has also been posted at  the 'Big Society, Learning Disability and Civil Society Research Blog

On the 10th December 2015 the BBC reported the following:
NHS trust ‘failed to investigate hundreds of deaths’
By Michael Buchanan, Social Affairs Correspondent, BBC News
10 December 2015

The NHS has failed to investigate the unexpected deaths of more than 1,000 people since 2011, according to a report obtained by BBC News. It blames a “failure of leadership” at Southern Health NHS Foundation Trust. It says the deaths of mental health and learning-disability patients were not properly examined. Southern Health said it “fully accepted” the quality of processes for investigating and reporting a death needed to be better, but had improved. The trust is one of the country’s largest mental health trusts, covering Hampshire, Dorset, Wiltshire, Oxfordshire and Buckinghamshire and providing services to about 45,000 people. The investigation, commissioned by NHS England and carried out by Mazars, a large audit firm, looked at all deaths at the trust between April 2011 and March 2015. During that period, it found 10,306 people had died. Most were expected. However, 1,454 were not. Of those, 272 were treated as critical incidents, of which just 195 – 13% – were treated by the trust as a serious incident requiring investigation (SIRI).

InvestigationsThe likelihood of an unexpected death being investigated depended hugely on the type of patient.

The most likely group to see an investigation was adults with mental health problems, where 30% were investigated.

For those with learning disability the figure was 1%, and among over-65s with mental health problems it was just 0.3%.

The average age at death of those with a learning disability was 56 – over seven years younger than the national average.

Even when investigations were carried out, they were of a poor quality and often extremely late, the NHS England report says. Repeated criticisms from coroners about the timeliness and usefulness of reports provided for inquests by Southern Health failed to improve performance, while there was often little effort to engage with the families of the deceased.

Key findings from the report
The trust could not demonstrate a comprehensive systematic approach to learning from deaths. Despite the trust having comprehensive data on deaths, it failed to use it effectively.
Too few deaths among those with learning disability and over-65s with mental health problems were investigated, and some cases should have been investigated further.

In nearly two-thirds of investigations, there was no family involvement.

The reasons for the failures, says the report, lie squarely with senior executives and the trust board. There was no “effective” management of deaths or investigations or “effective focus or leadership from the board”, it says. Even when the board did ask relevant questions, the report says, they were constantly reassured by executives that processes were robust and investigations thorough. But the Mazars investigators said: “This is contrary to our findings.” The culture of Southern Health, which has been led by Katrina Percy since it was created in 2011, “results in lost learning, a lack of transparency when care problems occur, as well as lack of assurance to families that a death was not avoidable and has been properly investigated,” the report says. The report was ordered in 2013, after Connor Sparrowhawk, 18, drowned in a bath following an epileptic seizure while a patient in a Southern Health hospital in Oxford. An independent investigation said his death had been preventable, and an inquest jury found neglect by the trust had contributed to his death. Responding to the report’s findings, Connor’s mother, Sara Ryan, said the entire leadership of Southern Health had to go. She said: “There is no reason why in 2015 a report like this should come out. It’s a total scandal. It just sickens me.”

‘Considerable measures’ taken
The report’s authors, who spent months looking into how Southern Health failed to investigate so many deaths, seem to concur. They say: “We have little confidence that the trust has fully recognised the need for it to improve its reporting and investigation of deaths.”In response, Southern Health NHS Foundation Trust said it accepted its processes “had not always been up to the high standards our patients, their families and carers deserve. “However, we have already made substantial improvements in this area over a sustained period of time.”It added: “These issues are not unique to the trust and we welcome the opportunity to shine a spotlight on this important area. “Though the trust continues to challenge the draft report’s interpretation of the evidence, our focus and priority is on continuing to improve the services we provide for our patients.”
It said that when the final report was published by NHS England, it would review the recommendations and make any further changes necessary.

‘Shocking findings’
An NHS England spokesman said: “We commissioned an independent report because it was clear that there are significant concerns. “We are determined that, for the sake of past, present and future patients and their families, all the issues should be forensically examined and any lessons clearly identified and acted upon.”
It added: “The final full independent report will be published as soon as possible, and all the agencies involved stand ready to take appropriate action.”
Norman Lamb, who was the care minister in the coalition government, said the findings were shocking: “You end up with a sense that these lives are regarded somehow as slightly less important than others and there can be no second class citizens in our NHS. “The thought is just horrifying and there have to be some answers from the trust.”


At the time of writing this blog (Thursday, January 7, 2016) the Governors of this NHS Trust had met to discuss this report and the ‘lack of leadership’ that the report identified in relation to the trust. You can get a bird’s eye view of the meeting here (well at least an edited one):

Last night twitter responded largely with incredulity but also amazement at the lack of perceived accountability of senior management in relation to the dehumanization of people with the label of learning disabilities in the care of the trust. A response of one of the senior managers of the Trust was that their organisation was on a ‘learning journey’, responding to the report and liaising with other services and professionals in order to, one assumes, improve their service. Without getting into the specifics here, nor the names and personnel, we want to consider learning as a phenomenon, process and practice and offer some advice to them or any professional or service truly interested in changing their cultural practices:
  1. Learning is a tricky idea – learning is a very contested idea especially in the field of educational studies. Learning is not simply about gaining new skills or improving one’s competencies. True learning, according to the late great critical educator Paulo Freire, can be found when one’s perspective on the world is truly transformed by encountering the world. We like this idea of learning. And we put it out there as a model of learning. We hope to see those who work with people with learning disabilities – and anyone showing a passing interest in the Mazar report – to be truly transformed in their thinking. We want them to learn again; to learn that people with the label of learning disabilities are human beings, with rights and lives that we must value.
  2. Learning is political – Paulo and his comrades developed an approach to learning that they called critical pedagogy. In short this approach saw learning not simply taking place in the classroom (nor senior management meeting room for that matter) but in the wider world. To truly learn then one has to be part of the world and, crucially interested in changing the world. The Mazar report is a huge kick up the arse to anyone interested in improving the lives of people with learning disabilities. It demands not only accountability for past failings but a commitment to new ways of working with people so-labelled as equal stakeholders, full citizens and fellow human beings.
  3. Learning should eradicate discrimination – no one ever knows everything nor should they ever think that they do. True learners are always modest, uncertain and questioning. But learners should always be engaged with the inequalities endemic within our society. And learners should desire an end to discrimination and oppression for example in the lives of people with the label of learning disabilities. A learning journey should involve visiting people and destinations in order to learn from examples of good practice and communities that value equity. One destination we suggest is self-advocacy; and there are many groups in the UK who can offer wisdom and advice.
  4. Learning should be uncomfortable – the more we think we know then the more we feel uncertain. We find ourselves outside of our comfort zone; perhaps questioning what we thought we knew in the first place. One response to this is to find an easy answer – or a safe place – that protects us from uncertainty and makes us feel less confused. This is a mistake. Our learning journeys should push us into some difficult spaces and places. And when one finds a location really uncomfortable then perhaps now is the time to move on to another destination for learning.
  5. Learning is a Human Practice – To get to this new destination, anyone wishing to genuinely learn must answer some very political questions that involve human beings and how we learn together:
    “Who am I going to learn from?”
    And “How am I going to learn?”.
These human questions are political and social because we have to recognise how the voices of disabled people and their carers have not been heard in current discourse. They certainly don’t seem to be heard anywhere near enough in the immense task of designing healthcare systems that work for the people that use them. This may seem like a task for the technocrats, and those flashy people who are great at producing organisational flowcharts and speaking inspirationally next to flipcharts – those people are no doubt useful, but the serious work of real learning happens elsewhere, other people must be listened to, involved and empowered first.

The answer to “who am I going to learn from?” must be from people who are the real experts in their own lives. This means listening to people with disability and mental health labels, with lived experience of how services succeed and fail, and to the people who love and care for them, their families. It cannot be overemphasised that the key to good services lies with listening to the people who use those services. Every layer of the organisation must be committed to learning, and involve itself seriously in listening precisely to these people, particularly and especially those formally charged with power to make change in the organisation.

The answer to “How am I going to learn?” must be thought about seriously too. Listening to learn from people requires a genuine and quite humble commitment to hear and to act on what is being heard, and services find this very difficult. It’s a process that requires building up longer term trusting relationships because learning is not shared easily or automatically. Somehow a relationship that is often characterised by mutual recrimination and suspicion has to be transformed into one where the people who matter in the process feel genuinely listened to and valued for the contribution they are making. Real listening goes far beyond patronising consultations that some bodies conduct. It to become genuine coproduction, where information is open, hierarchical positions are abandoned, and there is ‘power with’ rather than ‘power over’. A turn of phrase our Paulo would like.

Listening to and involving people must become part of the everyday life of the organisation, a habit so entrenched it seems natural. The dialogue in such coproductive spaces should be in clear everyday language that enables everyone to be included and to contribute. Time and space can be given to people who need to develop what they are trying to say. It’s a task for the whole organisation, not a little special section tasked with listening on behalf of the organisation, when the real decisions are made elsewhere.

This process of learning is the opposite of the dehumanisation revealed by the various reports and inquiries. It requires recognising people as human beings with expertise in their own lives, and on the way services impact on those lives. It requires climbing out of hierarchies and interacting in human ways with a serious commitment to listen and make change. The impact of interacting in such human ways changes the values and language of all the people involved, and we hope creates systems where human beings lives are no longer easily disregarded, because they are people we know, people we care about, people who we recognise as human in a fundamental way.

Our hunch is that perhaps in some organisations the discriminatory assumptions prevalent in society are so deeply entrenched that such fundamental commitment to change from leaders remains a pipe dream. There are two alternatives. One is to decide that such genuine learning is impossible for bureaucratic and market driven service systems and do nothing. We know that if we follow this line nothing will change.

The other is to decide to make a serious attempt at the change, and cultivate all the spaces where it can and does happen. Maybe learning won’t happen in the hopeful way we describe. We do know that when people with many different perspectives are drawn together, and they genuinely listen and learn to each other, the outcomes can be surprising.

So, we are all for a learning journey, but where do we want to go?

Tuesday, 5 January 2016

Sometimes Blogging Makes A Difference

Suddenly, as never before, my blogging is making a difference.

I've been interested in blogging for a few years now, and posted up lots of bits and pieces. I couldn't say that I've been a serious blogger however. I haven't posted often enough or on consistent topics enough to build a big following.

Up to now I've used my blog to share ideas and news as a bit of a dilettante. I've never seen it as a way of creating change. This assumption has been completely knocked sideways however with the reaction to my two most recent blogposts: Christmas in the Hospice and Atul Gawande on End Of Life. Suddenly blogging for me has surged into life. It's become something that is leading real people to take real action, in line with the hopeful title of my blog!

In those two posts the topics of my writing felt a little unsafe. It felt risky to write about the prospect of my own death, how I intend to prepare for it. How I intend to live as well for as long as possible with the people I love before and until my death happens.

I decided to be as open, honest and simple in my writing as I dared. I think people who read my blog appreciated this approach. I feel that this led to some major results:

First of all I noticed that the numbers of people reading the blogposts was unprecedented, people had started getting in touch, and sharing the posts on facebook and twitter. The stats for hits on my blogger account spiked dramatically. It's hard to express how the adrenaline can buzz at the sight of few dry numbers when you know these means hundreds of people are reading and sharing your writing!

I've since been privileged to be contacted by people living with cancer and their relatives who have got in touch to compare notes. I know from my own experience that there's nothing like making a connection with someone in a similar situation to make you feel less alone. I've had real inspiration from Ben Ashworth whose approach to his bowel cancer is no less than heroic, and by amazing coincidence lives just round the corner from me. I also appreciated the support I got from Vine House and from the Preston Gentle Approach to Cancer Group.

 I was also contacted within hours by the public relations person from St Catherine's hospice who has shared the blogpost on St Catherine's own website, which makes me feel truly honoured. We've been talking about how to share some of the messages in my post more widely: I'd like people to understand that hospices help not just in the last days of a person's life, but help people in the way they were helping me, such as helping people find ways to manage their pain. (I also got loads of other kinds of support while I was there, including some handy advice about benefits), more than 50 percent of people using the hospice's support are for similar reasons to mine.

I'm also interested in understanding what makes the best human support 'person centred'. I think many people at St Catherines showed real person centredness in how they worked with me and other patients: they showed their own humanity and recognised ours too in hundreds of little ways. My previous job as a person centred planning coordinator was about discovering what those hundreds of little ways are and helping more people be able to use them in care settings, so I feel really passionate about this.

 We're putting together a press release with more information about my visit to St Catherine's, and my whole cancer story to see whether this can help improve people's understanding of what hospices and palliative care are for and get across some of the other important messages about achieving the best kinds of human caring, which we hope will feature soon in the local press.

I was also delighted that local microblogger 'Blog Preston' was interested enough to share my post on that blog too!

I'm also delighted by the response from Helen Sanderson towards these posts. Helen is one of those unusual people who is incredibly skilled at taking ideas and making them into something real, that makes a real difference to real people. She has a genius for getting to the crux of what matters, of summarising and simplifying so that the tools and approaches she shares feel easy and natural for many people to use. The 'One Page Profile' is a brilliant example of this talent.

Helen also has a talent for bringing together wonderful creative passionate people with deep values and commitment. This means I'm absolutely blown away to see that my blog is part of what has inspired her to start working on a tool to gather together people's end of life wishes on one page. Already within a couple of days since I posted at least one hospice and several experts on end of life care have stepped forward via twitter to indicate that they want to be part of trialling such a tool and making it work: A simple tool that helps people facing the end of life gather together what really matters to them and ensures that this becomes part of their support.

Wouldn't it be wonderful if a tool like this becomes something that really helps many people express and share their end of life wishes, and then truly live well and die well?

I'm trying to grasp exactly why these two blogposts have precipitated such action and potential change. Partly it is because they are timely, on topics where people are already doing good thinking and have ideas they want to develop. I think however it is also because I am now delving into the well of my own lived experience. I'm writing about difficult times and difficult thoughts and trying not to shrink from expressing myself clearly and honestly, even if that's a little bit scary.

I intend to continue blogging in this vein, and I'll certainly try to do my part in helping St Catherine's,  Helen Sanderson and others with their work around End Of Life. If my prognosis after my last scan is correct, then I would like the experience of the last months of my own life to be genuinely useful to other people.

I wonder whether I can do this by writing not as an expert, but as a human being.

Sunday, 3 January 2016

Atul Gawande on End Of Life

One of the best current writers about End Of Life is Atul Gawande. He is a surgeon who has spent a lot of time keeping people alive. His thoughts on the terrible price to comfort, dignity and wellbeing of the past medical imperative to keep people alive at all costs are well worth reading, especially in his great book "Being Mortal".
Atul Gawande poses 5 questions that are useful to anyone to people facing the end of their own lives, and the issues they will need to face, along with their families and carers.

These questions are:

1. What is your understanding of where you are and of your illness?

 2. Your fears or worries for the future

 3. Your goals and priorities

 4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?

 And later,

 5. What would a good day look like?
I am struck by how similar these questions are to questions, tools and approaches routinely used in 'person centred practices', tools I learned in my own past practice from teachers I've met and worked with,  like Gill Bailey, Helen Sanderson, Michael Smull, John O'Brien.

We found the person centred questions we asked powerful, because they applied as much to ourselves as to the people we were thinking with. They are universal questions that apply to any human being. Of course they are particularly useful when faced with the challenge of a disease or disability, and when the unconscious social response to the presence of such conditions has been to take away choice and control from the person affected.

Thinking about questions like these are a way of winning back some choice and control, of working out what is important to you now and in the future and making sure that this happens, rather than being drowned in a sea of other pressing priorities.

A death where the dying person has won back some control over where and how they die, over who is with them, and crucially how they live well in a way that makes sense to them before they die, which has mindfully included what is important to them could be described as a 'person centred death'.

I've already done a little of this thinking for myself, and shared tools like my one page profile and my history map on this blog. My most recent scan suggests I need to think more urgently about Atul Gawande's questions and my recent time staying at St Catherine's hospice gave me a chance to think about this.

So I've been talking to my wife, who is currently also my main carer (though she doesn't recognise this as a description of her role!). We will be working through some of the tools in 'Living Well' a really good tool for end of life that was designed by people from Lancashire County Council as well as Helen Sanderson Associates. Some examples of them may well get posted on this blog!

I'm really going to have to give some thought to what matters to me. Most of this I'm realising is the people around me. My friends and family, so I'm going to need to think about good ways to spend time with them, and letting them know what they mean to me.

One of the major discussions we have been having has been about who our real circle of support comprises. So many different people have stepped forward in different ways to offer us support, including really valued friends who have cooked meals and been there for both me and my wife in a way that I think is unsurpassable. Phone calls and warm messages have reached me from all over the world, and I know that prayers have been said for me in places of worship of many different religions and denominations! One person has kindly given me access to time in her beautiful retreat space. At some point it will be useful to draw together this amazing circle and think with them about the support I'll need at end of life. I hope to get some help with this from Community Circles.
We've spoken about where I would like to die. My wife and step-daughter both felt really strongly I should die at home. I've been thinking about this. When our son was born at home, I realised how small our terraced house was, particularly with extra midwives, breathing equipment and all the accoutrements of birth packed in. Supporting someone to die must have interesting similarities to helping someone be born. I can see that it will involve  a lot of work and disruption for my wife and famly. I also think however with a good circle of support around them it could work and be exactly the kind of death that would make sense for me. I know that when it comes to it, the people I love can help me have a good life right up to my death, and then a dignified death with the people that really matter to me around me, the people who have been my community and who have given my life meaning.
These are the things I'll be putting into my end of life plan. As Atul Gawande said “You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.”