Doctors Must Unite Together For the Rising Generation

This week the health secretary, Jeremy hunt, tweeted this: “Moderate doctors must defeat the militants”.

Here is a man I truly admire speaking some (slightly rude) truth to power. Sir Sam Everington knows a thing or two about the power of protest.

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Changing the Culture of the NHS

imgresI had the very real privilege of listening to and interacting with Prof Mike West of the Kings Fund as part of a Cumbria Wide learning collaborative a few days ago. It was utterly engaging and inspiring. His basic strap line is this: “The vision of health and social care is to deliver continuously improving, high quality and compassionate health care to all in our community.” The problem is that we’re not doing this, and we’re not doing this because there is something deeply wrong in our culture. And so how do we change a system, especially when it feels that the odds are seriously against us? How do we recover compassion? How do we envision a floundering workforce and help them to believe? Why are there some beacons of light in each organisation and some really dark holes? Why are we not learning more readily from areas of good practice and challenging those that are way below par?

 

There are some seriously problematic things for us to face up to, and although I love to take a ‘solutions-focused’ approach, I do believe that sometimes you have to face up to your reality before you decide to move into a different kind of future. We could talk until the cows come home about the potential dismantling of the NHS, the low morale of staff and this ‘black hole’ of debt. But what I want to focus on in this post is the cultural deficit. Previous governments have tried to address this with targets, competition and inspections, but each of these, although I think introduced with good intentions, have backfired spectacularly and driven morale lower without improving the culture at all.

 

imgresStress is defined by Mike West as a poisonous concoction of high work demand, low control and poor support. Chronic high stress levels are significantly higher in the NHS (26.8%) compared to any other sector (17.8% on average). High stress is detrimental for people’s health and a well known cause of early death. And so in an organisation in which we have 1.4 million people spending on average 80000 hours of their lives caring for other people, we are literally killing them by not caring for them. This is a paradox in an organisation which is supposed to have compassion at its core. And yet we know through significant evidence that the lower the morale and health of your team, the worse the outcomes for patients will be. Stress in the NHS and the lack of compassion with which we treat our own staff is a more significant health risk to the population than many of the issues that we give far more attention to.

 

So, what can we do? Are we doomed to serve systems that de-humanise people and devour them like bread? Must a system be driven by what Foucault calls ‘biopower’, ie using human beings as the fodder to drive the machine? Can the systems be harnessed and redeemed and made to work for us rather than served by us? Yes! I can say that this is happening here in Morecambe Bay and I see evidence of it in many areas. Nationally, we can take comfort from 2 things, in particular. Firstly, although the truth about our current culture is uncomfortable, the truth is now available to all, so change really can happen. Secondly, the vast majority of people genuinely want the culture to change and the dominant minority in the centre of toxic cultures can no longer hold. Mike West says systems can change, and he has gathered some good evidence to back this up. But it takes time (5-6 years), it takes focus and it takes consistency. He breaks cultural change down into 6 key elements that are well worth exploring.

 

6 Key Elements of Cultural Change

 

1) Vision, values and strategy. It is absolutely vital in order for a culture to change that the direction of travel is obvious to all. Salford Royal Hospital in Manchester have for years had the same vision statement: “To be the safest hospital in England”, and they have done it! A vision has to be clear, it imgreshas to mark ambition for the future and be able to guide and inspire the whole organisation towards change. However, it takes 5-6 years to embed this through an organisation. So those who communicate a vision to staff and then wonder why they haven’t got it yet need to understand that a paradigm shift in thinking doesn’t happen overnight. A change in direction of the rudder doesn’t turn the ship in one go. The vision needs to be communicated multiple times in multiple ways to multiple audiences. It needs to be inspiring, owned by all and makes clear commitments to the direction of travel.

 

2) Clearly aligned goals at every level. If a vision is to be cast, there must be measurable goals along the way, so that a team knows they are heading in the right direction. These goals have 2 key elements. Firstly they must be clear and achievable (so not more than 5 or 6). Secondly, they must be aligned to vision, measurable and challenging. People must be challenged to reach an objective, so that the process is both stretching and fun, and there needs to be celebration of goals being reached along the way. Problems emerge here when leaders don’t want to hear about problems that are being encountered. The team needs to be responsive to barriers. For example, there is no point wasting time and energy on collecting data for the sake of it. We want to collect data that actually helps improve patient care or helps staff do their job more effectively. If we want our staff to treat people with care and dignity, then we must treat our staff with care and dignity and that means listening to them and responding to them as we head into uncharted waters.

 

3) Leaders need to manage and engage with their staff well to gain high quality care. The high level ofimgres chronic stress in NHS staff proves that this is not happening as well as it needs to. The Kings fund have discovered some key themes from their research in this area: a) patient satisfaction rates are far higher where staff have clear goals and are working together as a team to achieve them, b) staff views of their leaders is directly linked to patients’ views of care quality, c) staff satisfaction/commitment predicts patient satisfaction, d) if staff feel high work pressure, low control over this and low support then patients will also report low staffing numbers, insufficient support, privacy and respect, e) poor staff health and well-being is directly linked to high injury and mortality rates, and good HR practices lead to lower and decreasing levels of patient imgresmortality. Another key factor is the reduction of hierarchy. The John Lewis Partnership has consistently had the highest level of staff morale for the last 180 years. one key factor is this: there are only 3 levels of hierarchy – CEO/board/partners. Staff/partners feel empowered to make changes and they are listened to.

 

We are not managing our staff well in the NHS. 24% of staff report regular bullying by ‘management. Discrimination is higher especially for those of Black-African and Black Afro-Caribbean descent. It is still high for those from Asia and 18 times higher for Muslims than for any other group and is also high for those who are not ‘heterosexual’. If you have white skin, you are three times more likely to be imgrespromoted into senior leadership positions, when account for numbers is made. And despite the suffragettes we continue to see discrimination against women in certain specialties, most notably, surgery. This is not an acceptable culture. We need to change the culture. Leaders need to learn to be present for their team. Mike West puts it so well: “Leaders need to learn to listen, with kind eyes, full of care and fascination (just as we would want our patients to be listened to). We need to learn empathy, to communicate well and take intelligent action.” Engagement with our teams is about really engaging at an emotional level and this takes trust. Our management styles must change towards being far more inclusive, empowering and under-girded with our values and integrity. For staff to feel happy, there needs to be a sense of a stable senior leadership team. There should be a real sense of anger about how badly staff in the NHS are currently treated but a clear positive attitude towards affecting change. Leaders must help process negative emotion in their teams and deal with quarrelsome, disruptive behaviour that spoils the hope for a different future. Poor performance and attitude has to be challenged if we are to create the kind of culture we need and want to see.

 

There are many situations and systems in which an entire culture can be toxic, with top down bullying as the order of the day. Creating resilience in our teams is not about toughening people up to go back into toxic situations until they finally break. No, we need something far more creative than this. It is impossible to change a culture as a lone shark. Mike West talked about gaining ‘minority imgresinfluence’ – good examples of this are found in the Feminist movement and the Green Party. A small group of committed and determined people can accomplish an incredible amount. But if the culture will not change, then wipe the dust off your feet and go and give your energy elsewhere. Systems can change if there is desire enough to change them. There are hospital trusts in the UK that report significantly higher staff morale than anywhere else. We must learn from places like Salford Royal, Royal Wolverhampton Hospitals, St Helen’s and Knowsley, Bedford and Frimley Park. Here in Morecambe Bay, where the maternity service has been at rock bottom, we are part way through an incredible cultural shift and many other departments throughout the country are beginning to turn here and ask us what we’re learning in our journey of change.

 

4) Learning, Quality Improvement and Innovation. This is a very straight forward point, but one to which we do not pay enough attention. Learning organisations facilitate the learning of all staff and the system itself to continuously improve. If we’re not improving, we are going backwards. We must learn to learn from failures and create a culture where this is acceptable. Learning organisations are characterized by systems thinking with information systems that can measure performance. In such a system, staff are encouraged and motivated to focus on improving quality (why would we want to do a shoddy job?). Learning is done in teams and crosses the boundaries of role and specialization and there is always dialogue going on around this. Prof West says that a key question to continually ask is this: “What do we need to change around here to enable you to be able to do your job more effectively?” We must make a promise to learn and a commitment to act. Where staff have a focus on continually improving patient care and this is embedded in the culture, targets become obsolete. Reflective practice and learning becomes endemic. All staff are accountable and all staff are enabled and empowered to bring about change.

 

5) Team working. Teams need clear objectives, roles, communication and learning. In the NHS, 5% of people say they do not work in a team. 40% of people feel they work in an effective team. That leaves 55% of people who consider the team they work in to be dysfunctional. Stress, injury, bullying and errors are all higher in ‘pseudo-teams’ and the mortality rates are significantly lower for patients who are cared for by teams that function well. Interpersonal conflict is a disaster for effective team and inter-team working. The imgresKirkup report into Morecambe Bay and the Francis report into Stafford both highlight the appalling and detrimental effects of the breakdown of relationship between consultants and hospital departments.  It is estimated that up to 30000 deaths per year could be prevented by more effective team working. This conversation really matters! We have to change our culture.

 

To develop good teams, we must encourage positive and supportive relationships, resolve and prevent conflicts, create a positive group attitude to diversity, be attentive and really listen to our teams, encourage inter-team cooperation and nurture team learning improvement and innovation. Our teams must develop reflexivity. Teams are more effective and innovative to the extent to which they take time out to reflect upon their objectives, strategies, processes and environments and make changes accordingly. The best response to pressure is not to work even harder, but to stop, take a step back and reflect. This is true even in emergency situations, as evidenced by the pilot who handed over the controls to his co-pilot whilst he took time to assimilate his options and decide on a strategy to land US Airways flight 1549 in the Hudson river in 2009.

 

iu-46) Collective Leadership. Leadership is the responsibility of all. It is for anyone with any kind of expertise to take responsibility where and when appropriate. Leadership is shared in teams across the whole community. It is interdependent and collaborative, working together to ensure high quality health and social care. This is our experience through Better Care Together in Morecambe Bay. It needs to be both clinical and managerial. The more hierarchy there is, the less opportunity there is to innovate. There are lessons for us to learn from more collaborative leadership styles like ‘The Art of Hosting’. We would do well, to take heed and learn some vital lessons from teams daring to do things differently.images

 

Mike West finished his lecture with a very beautiful summary: Health and Social Care is about the core value of compassion. We want to create compassionate communities that listen with fascination and are empathic. We have to begin with ourselves. We need to take intelligent actions around this so that we can create the kind of cultures we want to see.

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Walk Out, Walk On

walk-out-walk-on-logo

 

 

I’ve recently returned from a fantastic holiday in one of my favourite places – La Belle France. It was a wonderful time of relaxation, restoration, reconnection and reflection. My summer reading was the quite simply stunning book, “Walk Out, Walk On”, by Meg Wheatley and Deborah Frieze, recommended to me by Prof Stuart Eglin. It resonated with me, provoked, challenged, encouraged and envisioned me and I heartily recommend it as a MUST read, if you haven’t done so already.

It flows in the same stream as ‘The Art of Hosting’ and is refreshing in its style – one of learning, rather than teaching, an invitation instead of an instruction manual.

The basic premise of the book is this: many of the current systems we have, “are failing to create solutions to the very problems they were created to solve.” They have become large, over-organised, lumbering bureaucracies that stifle creativity and use people to support and uphold the structures, rather than releasing the people and supporting them to live and work more resiliently.

When we recognise that a system is failing, we can spend an enormous amount of time and energy trying to put sticky plasters on it, attempting to fix and repair what is there. Perhaps this is because we are afraid to let go, perhaps because we develop a kind of idolatry or sentimentality towards what was or we simply cannot imagine a different way of being. But there are pioneers who look for new alternatives and they fall into two types.

1) Some will look to create new alternatives within the structures and help the old transition into the new.

2) Others will create new alternatives outside of the old system and invite others to slowly join as they discover new ways.

Both pioneering types are vital – and share the same core DNA – they are ‘Walk Outs’. What is vital is that they don’t just walk out, but that they walk on to reimagine a different future. Walk Outs are not motivated by greed or power, but by love and kindness, recognising the damage caused by the current system and looking for an altogether better way.

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Walk Outs can often feel quite isolated and alone, but once they begin to find each other, connection and community become key ingredients to finding the way forward.

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This challenges our management school and well rehearsed ideas in western thought about how growth and change occurs within organisations and systems. We do not need to continually look for maximising growth and profit. There are alternative motivations and more sustainable futures than the ones we are currently choosing.

My personal focus in the next few blog posts will be to apply this to the NHS and healthcare at large. I will take each chapter in turn and draw out some of my learnings from the amazing communities around the world brought to life in this book to help reimagine what healthcare is for.

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Integration and Collaboration

In my opinion there are two main systemic barriers to providing great health care on the NHS, currently (there are other ones also but in terms of the system itself – these are the two biggest). The answer to overcoming them btw is not privatisation via the TTIP. I like to look for solutions to problems, rather than focus on the negative….

So, firstly (and it really isn’t that hard to do, it just requires some funding, which in the medium/long term would be money seriously well spent):

 

iuAmalgamate patient electronic records and share them across the system. There is so much time/money wasted and clinical errors made because of this very easy to solve issue. I’m sure there are reasons why citizens may feel concerned and I really do understand them, but given the great work already going on in Tameside at the hands of the excellent, Dr Amir Hannan, and the positive feedback from patients, this needs to rolled out as far and wide as possible.

It helps patients feel more able to manage their own health conditions and ensures notes are always available at each consultation. It means medication changes are managed more safely and effectively and information is shared between professionals in a timely way.

 

And secondly:

iuBreak down the silo mentality and reality of the various care organisations. Breaking down the walls that prevent effective team working and amalgamating the budgets of health and social care will be a huge breakthrough for care. We are already seeing this with the establishment of Integrated Care Teams within general practice. The teams comprise of: GPs, Community Matrons, District Nurses, Community Therapists, Midwives, Health Visitors, Mental Health Teams, Social Workers, the Police, the Fire brigade, and a Care Co-ordinator to pull it all together. If you also throw into the mix third sector organisations aligned with practices and patient volunteers, you have an amazing force for good!

 

There are some warnings to put in place. Manchester, which is the first place to really try this under ‘Devo Manc’ is having a huge overall budget cut (20%) as it launches into it. The hope is that by working more collaboratively and in an integrated way, savings will be made. But the ‘Save our NHS’ group have some major misgivings.

 

 

If you wanted to know more about the details of DevoManc and the health impacts of that. You can find the Memorandum of Understanding here: http://www.nhshistory.net/mou%20(1).pdf and the Five Year Forward View here: http://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf
Innovative collaboration and integration of our health and social services does not have to mean the privatisation of them. But if the TTIP comes into effect, despite huge public opposition, then the NHS as we have known it will be over. IMO the TTIP deserves a full referendum by the people of Europe. If you don’t know about the TTIP, you need to, and you should seriously think about writing to your MEP to tell them why this deal needs to be stopped.

[1] Independent: What is TTIP? And six reasons why it should scare you:
http://www.independent.co.uk/voices/comment/what-is-ttip-and-six-reasons-why-the-answer-should-scare-you-9779688.html
Huffington Post: Corporate Courts — A Big Red Flag on ‘Trade’ Agreements:
http://www.huffingtonpost.com/dave-johnson/corporate-courts—-a-big_b_5826490.html
[2] MEPs will be voting on a resolution on TTIP in Strasbourg on June 10th. It’s not a legally binding vote, but what MEPs decide will send a strong message back to the European Commission about where we all stand on TTIP. If there’s enough opposition, especially to the worst parts of TTIP, it could damage the deal for good:
Euractiv: What will Parliamentarians vote on TTIP?
http://www.euractiv.com/sections/trade-society/what-will-eu-parliamentarians-vote-ttip-313845
[3] You can find out more about the European Citizens Initiative and who’s involved here:
https://stop-ttip.org/

 

If you want to, you can sign a petition here:

https://secure.38degrees.org.uk/page/s/eu-ttip-petition#petition

 

We need to continue with the kind of healthcare we actually believe in, improving it where this needs to happen, without it being stolen from those who need it most because of greedy trade deals.

 

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UK, You’ve Had a Heart Attack – How Are You Now?

MIYou might want a cup of tea whilst you read this! I often see patients a week or two after they have been discharged from hospital with a Myocardial Infarction (what we often refer to as a heart attack). In this part of my home county, once someone is diagnosed with having a MI, they are admitted to Blackpool Victoria Hospital, where an amazing team of cardiologists literally save their life by putting stents into arteries in their heart that have become clogged up. It has been a phenomenal breakthrough in medical science in the last 15 years and has revolutionised how cardiology services are configured.

New medicines are prescribed to help keep the heart and kidneys healthy and patients are reviewed to see how they are getting on. What I always love in the initial consultation following a heart attack is how reflective a person becomes. Everything in their life gets assessed and reprioritised. Key questions are asked about how much stress they have been under, and why they were living at such a fast pace whilst forgetting about what is really important – living well, relationships, love, beauty, people and connecting with the story of who they feel they really want to be for the rest of their life. It is very rare to find a person who is desperate to get back to business as usual or someone who doesn’t ask some fundamental questions about what life is for. It is possible in some of these consultations to have some of the best coaching conversations a practitioner can ever hope to participate in. Asking some questions of the patient about what they are going to change and how they are going to do so.

And yet, in the UK (and indeed the west), we suffered a heart attack beyond all proportions with the economic crash of 2008. But we have not really reflected on the major warning sign that it was to us. We have a government and financial system intent on “getting us back on track” – and I wonder to what, exactly? It isn’t that the financial system alone, just happened to have an infarction. It’s like assuming that a heart attack happens simply because of a defect in the cardiac system itself – this simply isn’t true. The crash was only a sign of just how broken our entire body is and we would do well to reflect a great deal more about how we are living as a nation and whether it gives us any real sustainability for the future of the planet and the generations to come. Our current response is not only to “get back on track” with where we were, but  to “tighten our belts” (which means to cut benefits left right and centre without regard for the dehumanisation of people in the process). It’s like believing the correct response following an MI is to emaciate and punish yourself, without asking some fundamental questions about how healthy your whole life is.

So, what about about a national health check – let’s look at each system in turn and ask some questions – because the truth is, we haven’t faced the fact that we are in an age of transition in which answers are not obvious and we don’t have any experts who have been to the alternative future we long for. So, we have to learn together and ask open questions that provoke better conversations to help us.

Let’s start with Education. George Monbiot has written a stunning piece in the Guardian about the current health of the education system: http://www.theguardian.com/commentisfree/2015/jun/09/aspirational-parents-children-elite?CMP=share_btn_fb – well worth a read. Our education secretary, Nicky Morgan on the other hand isNicky Morgan intent on more testing of our children and has recently given a speech in which she claimed that arts and humanities subject choices close down a child’s career options and they will earn 10% more in their life if they do Maths at A level – whooppee do dah. For an alternative and altogether more inspiring approach, look to the lovely Ken Robinson:

Couldn’t education become about real learning in which our children feel inspired and find hope for the future?

Ecology – Oh dear – so far a string of broken promises on the environment from the western governments. It turns out that oil and industry is more important than the future of the planet. Is it? If not, what are we going to do?

Defence – undergirding our entire nation are three things: Money as debt (see finance), the state of the exception (see law and order) and military violence. The ultimate trust of our nation rests on nuclear warheads. How healthy is this? How much fear do we have to create as a narrative to believe this is actually a good thing? Do we want that to be the undergirding faith of our nation? And what about the change in rhetoric regarding soldiers who die in war. David Cameron recently referred to soil from the battle fields of WWI (which was brought to London) as ‘Holy Ground’ and he described those who died fighting for the ‘allied forces’ as ‘martyrs’. Is the nation state therefore the ‘saviour’? If it is, what on earth do we mean by this? If not, then is there other language we can find to use about the two world wars without creating a very dangerous worldview?

Housing – 69% of the land continues to be owned by 0.6% of the population and there is a real lack of social housing available in deprived areas. This is causing significant problems for those already under huge financial strain, given the effects of austerity measures. Who does the land belong to and why?

Justice – How many of the perpetrators of crime are victims of a system that left them with little or no other choice but to commit crime? How restorative is our justice process?

Law and Order – our prisons are full to breaking, our police force is being cut and replaced with private security firms. How effective is our law and order system? And what undergirds it? Georgio Agamben cuts through to the heart of the issue in his exquisite book ‘State of Exception’. Underneath the whole of western ‘democracy’ lies the right for the government to suspend the rule of law i.e. invoke Marshall law if deemed necessary. I look at the people movements emerging across Europe right now and wonder how far we are from the ‘state of exception’ being invoked. All it will prove, as we already know, is that democracy is a vain imagination. What is it that undoes ‘the powers’? Could a movement for positive peace, founded on love offer any realistic alternative? If so, what?

Immigration – apparently the answer to our problems is to become more fearful of the ‘other’, create a politics of fear and blame immigrants for our financial problems. We are barricading our doors Syrian Refugeesand building up our walls to ‘protect our way of life’. And while there are currently 4 million homeless Syrian refugees, the UK has welcomed 147 of them in total. Did you know that the entire world population could fit into Texas? Our concerns about lack of space and lack of jobs is really unfounded and we seem willing to ‘love our neighbours’ with great initiatives like comic relief and generous charitable giving, just as long as it doesn’t actually have to affect us and our way of life…..how loving is that? How healthy is love that does not truly cost us and change us?

Health – this whole blog is about it, but 1 in every 5 pounds spent in the NHS is due to poor lifestyle choices we are making. We can’t live imgresexactly how we want if we hope to continue with a health service that is free for everybody. How will we change the culture? Can we find innovative ways of working collaboratively within the system that breaks down the silos in order to work more effectively for the good of our national health? Is privatisation the answer? If not, what are we willing to change/protest about to keep it public?

Government – a majority with 36.4% of the vote? Deeply wrong. There continues to be profound disengagement with the system and a deep cynicism that the current style of government can bring any real lasting change. We need a new politics – what might that be like? Where are the leaders who will choose to facilitate instead of dominate?

imgresEconomy – ah yes, that old chestnut. Do we want an economy in which the gap between rich and poor continues to widen? Do we want a system in which the poor are punished whilst the rich are exonerated for their greedy crimes? The entire western economy is based on a system of debt that requires us to continually grow and expand our borders so that the debt can be serviced. We have become slaves to the economic beast. Where are the alternative experiments emerging? What can we learn from them? Are we brave enough to try something new? I have posted this before, on my other blog – www.reimaginingthefuture.org  but Charles Eisenstein is so worth watching:

The human heart provides us with a great metaphor. The health of our nation(s) is not good. We’ve had the wake up call, and if we’re not careful (this is a warning from a doctor, so take heed), the next heart attack will be even more catastrophic. We have to reflect on where we are and ask ourselves where our current trajectory will lead us. I don’t want to get back on track if it leads us to more depression, destruction and decay. I want to find the road less traveled by – the one that leads to life, hope, love, regeneration, recreation and a beautiful future for our children. So many questions. So much to learn.

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A Conversation in Response to ‘Living with Illness’

After my last blog post, I got a couple of responses from people who felt I misrepresented them. I am always happy when people come back to me in discussion. We are never changed if we cannot receive challenge or we do not really encounter ‘the other’. So here is a conversation between me and a lovely person called Elly who helped me think more deeply about the complex issues of living with illness.

Hi Andy,

I’ve been introduced to your blog via Martin Scott’s, a dear friend. Interesting timing in that my daughter (in New York) and myself in the uk are both seeing consultants today looking at our multiple autoimmune diseases plus some possible new ones! We also have a group of friends praying today, as our health puts limitations on us. So here’s the thing, I read “living with” and then “are you healthy?” and got very angry….. don’t go away…. chronic illness is real, debilitating and often life threatening.. you know that. We would love to be able to function without them, sometimes it’s not possible and sometimes can mean often.

You suggest that health professionals and I would add government and well meaning charities label us disabled. I use the term disabled to get financial aid, practical help and to explain what it’s like because chronic illness doesn’t cut it for most people (they think it’s all in you head) another label. NHS and benefits don’t relate to it either. I was challenged by my use of the word and would like a creative way to describe my life (ever read the spoon theory?) My friends have been really positive with this site. Back to my anger… Maybe at myself for using the D word but also because I feel by putting us in 2 catergories you too have labelled us. We’re neither a or b (ok I know some are) but I am me, but with those limits… I’m my head I dream and sometimes wish I didn’t because trying to act on those dreams however small can bring on a crisis. I divert.. May I suggest that you too find a new way to address us?

 

are you healthy?
eating ..when we’re not nauseaous
exercising… limited due to poor mobility and pain
gratefulness… yes I am
forgiveness ..yes
care of others ….finding small creative ways to do this
nature would love to be out there too but grateful to hear the birds,watch the sky change

 

Now you may have not directed this at us but it felt like it so to try to deal with nasty feelings of mr anger I carried on listening to the amazing story of the 5th monk. (See reimagining health post). First you told it Soooo well, my attention was caught and I was totally engaged and with all that you shared. I think we will be hearing a lot more from you, you have a gift that will draw people to listen. What you say will be important (so maybe I had to get mad so I had to write to say all that (not from me).
If you want to use anything that I’ve written or you may want to delete feel free. Its been a long read admittedly or you may have given up! So bless you, continue on this journey and may others join. Use any of my stuff to encourage conversation. I’m going to get my gp reading this.
Elly

 

Wow – Elly – thank you so much for taking the time to write all of that. You are absolutely right and in my effort to write a shorter blog in which to engage people, I oversimplified it in a very unhelpful way. I was short sighted in how I communicated and probably pretty patronising as well – so for all of that I am really sorry. I guess we are only really changed as we encounter ‘the other’ and so I am hugely grateful that you took the time to tell me what it’s really like for you – it changes me.

 

 I manged to unintentionally upset another very lovely person, who told me about it on Facebook – here is part of my reply to her:
I was trying (and it seems unsuccessfully) in a shorter than usual blog to say 2 things, and I definitely didn’t unpack either well enough. However, I am hugely grateful for the chance for a conversation about it. I firmly believe we are changed as we encounter each other, and am therefore really grateful for your challenge and perspective. Gone are the days when doctors can utter edicts and always believe themselves to be right. On one level, I am trying to challenge the dehumanisation that is dealt to those, like you, who suffer with a long term, debilitating illness or disability. So much of the ‘system’ in terms of benefits, etc can (not always) dehumanise the people living with the conditions by labelling in an unhelpful way. So, I think there is a difference between calling Andy a diabetic, compared to Andy, who has diabetes or saying Janet is disabled rather than talking to Janet, who lives with a disability…..maybe I’m wrong…..
I am really hoping that we can find less dehumanising ways of talking about people who are disabled in some way…….language can be so clumsy.
 
Secondly, and this is where I was way too simplistic for which I do apologise, I was looking to speak hope rather than idealism for those who live with chronic ill health. I genuinely do touch on the deep pain and complexity of my patients lives every day and I know that the issue is not straight forward. My hope was to gently encourage without being idealistic that ones identity, although surely affected by chronic ill health, does not have to be defined by it. I have patients with debilitating MS, Parkinson’s, MND, Bipolar, schizophrenia and COPD who see their illness as part of them and they have had to courageously accept how utterly life limiting it is…..they struggle, they are breathless, they feel terrible pain, they hate, they feel hopeless at times and yet still they say that it is only a part of them – a huge part, that shapes every move they make, but isn’t the fullness of who they are. I could have said that much better…….did I improve or am I still missing it? 
 
Elly – I love what you wrote about being healthy. Doing those amazing things you do, like eating when you can, exercising in the ways you are able, being grateful, forgiving others, caring for others and appreciating the beauty around you, to me that says that although your body is suffering and tired, inwardly, you are well…..and if you weren’t there would be no judgement, only understanding (at some level) but maybe also a little offer of hope and encouragement that though the tunnel is long and dark, there would be people to walk through it with you……
Thank for your lovely encouragement to me also – I am hugely glad that you wrote to me and for the challenges you brought.
Andy

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