Morecambe Bay – Better Care Together

Morecambe Bay

 

Knox Family-180Known for it’s fast moving tides, mud flats, quicksands, islands, rare birds, natural gas, submarine building and nuclear power; Morecambe Bay is a place whose motto is “where beauty surrounds and health abounds”. The first part is true – it is a place with some of the most spectacular views on offer in the entire UK and hidden treasures of wildlife and wonderful walks. A place where I live with my family and I now call home. But it has some of the worst health outcomes in the country, sitting bang in the middle of the North-West – the worst place for health per head of population for any of the regions in the UK. We are the worst for cancer rates, the worst for heart disease, the worst for respiratory problems and the worst for early deaths. And please avoid the rhetoric that would have you believe that it is because of low aspiration and poor choices made by the people here. The North-West is underfunded in terms of health training, according to Health Education England, to the tune of £19 million every year, when compared head to head for other regions. And given the fact that health outcomes are so poor here, it is fascinating that 94% of all health research monies are spent south of Cambridge.

 

Looking at the health system here, it would be easy to be disheartened. The recent Kirkup enquiry into drastic failures at the University Hospitals of Morecambe Bay Foundation Trust, to which the trust has responded with humility and learning, highlighted just how much change is needed here. We also face the vast complexities associated with local tariff modification. And as if the local challenges are not enough, we have the added recruitment crisis that is affecting the entire country (worse in rural areas), the undermining of our junior doctors and their pay, the berating of nursing colleagues from overseas who don’t get paid enough to remain here, severely low morale in the system as a whole, and a maltreatment of General Practice in the National Press at a time when the profession is on the ropes; then there is the huge debt of the hospital trusts – compounded by the PFI fiasco and the creeping privatisation of our services, which has led to  the shambles that is out of hours care and staffing issues due to agency working. And iu-6all that is on the background of a hugely underfunded healthservice, with only 8.5% of GDP spent on health compared to the 11% most other OECD countries spend. The truth is, we simply do not spend enough of our GDP on health care for it to be sustainable in its current form, and the government knows this.

 

For the last three and a half years, I have been working here as a GP, having previously spent 14 years in Manchester. Three days a week, I work clinically in my practice, and the rest of my work time is given over to being part of the executive team for the Lancashire North CCG – I am the lead for Health and Wellbeing. Although the odds are stacked against us, something really wonderful is stirring here. I would go as far to say that believe it or not, Morecambe Bay is one of the most exciting places to be involved in health and social care anywhere in the UK. Let me tell you why I feel so hopeful (and why you should consider working here)!

 

Understanding the Purpose of Healthcare

 

iu-2A chap called, Phil Cass, who is an (unmet) hero of mine in the medical field, lives in the state of Ohio. He has been been doing some work with local communities to try and make healthcare affordable for everybody – a truly noble quest in a country where 50 million people cannot afford any. He took the conversation out to the community and they tried various questions, but found they weren’t really getting anywhere. He and team of people then realised that they needed to ask a better question. The question they needed to get to was “What is the PURPOSE of our healthcare system?” – Once the communities began engaging with this question, something remarkable happened – time and again, the same answer came through – the answer was this:- “to provide OPTIMAL healthcare to everybody.” The word optimal recognised that every person would achieve different “levels” of health depending on age, underlying health problems, genetics etc, but the vision of the community became that they wanted every individual and the community as a whole to live as well as they could. The community then realised that in order for this to be achievable, they had to fundamentally change their relationship with the healthcare system and this then made care much more affordable. Here in Morecambe Bay, we are taking a similar conversation to the 320000 citizens who live here.

 

Starting and Finishing with People

 

The NHS has become a horribly target driven culture and amidst the stress and strain, in which staff themselves often feel dehumanised, it is easy to forget what we are here for – human beings. Putting people (rather than patients) at the heart of how we think about health is a vital starting point.

 

FullSizeRenderSo, we are learning to truly engage with and listen to the people here. With the help of an amazng team, I have been hosting conversations here in Carnforth, in the form of ‘World Cafe’ discussions (a fantastic way to ensure every voice is heard). Our hope is that from Millom to Morecambe, we will see conversations springing up as we talk about how Morecambe Bay can become the healthiest place in the UK. And by being healthy, we do not mean just physical health. We are talking about mental health, social health (there really is such a thing as society!) and systemic health (including issues like road safety – still the biggest cause of death for our children, the environment and pollution, the real effects of austerity on our communities, the power of advertising and the high cost of healthy food). And as we talk with our citizens, we are not coming in with ideas of how to fix things, as though we are some kind of experts. People are the experts in themselves the their communities, and we have some expertise in a variety of fields. So, we have a meeting of equals. We are waiting to see what rises within the communities themselves and looking to support initiatives where that is wanted. Communities are having some really exciting conversations and some people are standing up to become ‘health and well-being champions’ (the photo is taken from a recent event, supported by our Mayor in Carnforth, looking to do exactly that), who want to help steward the well-being of the community and the environment. It is incredible to see how many people want to get more involved with making this area more “healthy”. Volunteers are springing up with ideas like gorilla gardening, shopping for elderly neighbours, cooking meals for those coming out of hospital, setting up choirs, starting youth clubs, community transport services to help housebound people get to appointments, cleaning up our streets, creating safe parks  and being hands on with support for those receiving palliative care. People are learning to ‘self-care’ and care for each other more effectively.

 

 

iu-3Atul Gawande, another hero, has written powerfully in his book ‘Being Mortal’ (a manifesto for change in how the medical profession deals with the whole topic of death). It challenges the ways in which we don’t face up to our mortality very well. We end up spending an inordinate amount of money in the last year of someone’s life on drugs which have a lottery-ticket chance of working, when all the time, we could help people live longer and more comfortably if we introducediu-7 hospice care earlier and treated people with compassion. We are looking to launch compassionate communities here, where we are not afraid to talk about the difficult issues of life. We want people to have the kind of care that allows them to make supported choices to live well, right to the end. Our BCT Matron, Alison Scott, is a true champion of this cause, along with Dr Pete Nightingale, the recent RCGP national lead of palliative care, Dr Nick Sayer, Palliative Care Consultant and Sue McGraw, CEO of St John’s Hospice.

 

From the moment of conception to the moment of death, we want people to have optimal health in Morecambe Bay. We want people to be able to live well in the context of sometimes very disabling and difficult circumstances and illness. We want to see care wrapped around a person, recognising that this cannot always be provided for by the current ‘system’.

 

Better Care Together

 

iu-4Before the government launched its five year forward view for the NHS, we were already in the process of learning to work very differently here, around the Bay. We have been blurring the boundaries between various care organisations (including the acute trust, the mental health trust, the GP practices – now forming into a more cohesive federation, community nursing in its various forms, the police, the fire-service, local schools, the voluntary sector, the county council and social services), building relationships between clinical leaders, sharing the burdens of financial choices and care conundrums, strengthening the pillars of the various players, redesigning care pathways across the clinical spectrum to ensure better care for patients and infusing everything we do with integrated IT.

 

 

The creation of integrated care communities (ICC) is at the heart of the vision to transfer more care out of the hospital setting and back into the community, whilst ensuring that the funding follows the patient. Our care co-ordinators become the new first port of call for our most vulnerable or ‘at-risk-of-admisison’ citizens. The idea is to wrap care around a person in the community, with the appropriate services being called in. Many times a care coordinator can bring in help from allied professions/volunteers and avoid unnecessary admissions or overlap of services. This means less pressure on the Emergency department and less pressure on General practice. We are also working to ensure our Urgent Care provision is fit for purpose with GPs, NWAS (our ambulance/paramedic service) and Out of Hours care offering much more of a buffer for our Emergency Departments.

 

 

Radical Leadership and the Challenges Ahead

 

 

There are many challenges ahead and both local and national threats remain. We are steering a huge ship through an iceberg field, and the so the waters are dangerous. We risk a lack of transfer of funding towards General Practice making it difficult for appropriate ‘buy-in’ for the changes we need to see. GPs ourselves have some brave leaps of faith to make. We will not be able to guarantee more money in our own pockets, but we must decide between protecting what we know or federating more fully for a more sustainable and excellent provision of care in the future (providing better education and career development in the process). We risk disengagement from senior clinicians in our hospital trust if the vision is not fully owned and shared by all. We have huge risks associated with the truly shocking cuts being forced upon our county council and a destabilisation of social care. We risk our nursing care home provision causing a halt to the entire program due to the vast complexities involved. Political whims, rules and pressures often seems to knock the wind out of our sails and could still utterly destabilise and destroy what is tenderly being built here.

 

 

mMiFlAqp_400x400However, one of the things which I have found most encouraging here is the quality and attitude of the leadership. Andrew Bennett as the SRO for BCT and iu-5Jackie Daniels, the CEO of UHMBT (the acute trust), have built stunning teams of people! I have the privilege of sitting on the executive board for the CCG and we have exec to exec meetings with the acute trust, in particular. The truth about Better Care Together is that for some it may mean doing themselves out of a job, letting go of power, and choosing facilitation and servanthood over domination and self-preservation. Leadership that is determined by the future and is able to lay itself down for the sake of what is really needed in our communities is exactly the kind of leadership we need. The leadership here across the spectrum is brave, it is altruistic, it is kenarchic, it is relational and it is rooted in the community.

 

 

And so we press on, knowing that we cannot remain as we are, knowing that in building together with our communities, we are finding that the future is not as bleak as it might otherwise be. Together we are wiser, braver and kinder. Morecambe Bay is no longer the butt of the jokes.  It is becoming a place of hope, a place of potential, a light that is beginning to burn, dare I say it – a place shaped by love. It will be a place where health abounds in the beauty that surrounds.

Share This:

Share

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.

2Loops-FirstLoop-500w

 

 

 

 

 

 

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.

images

 

 

 

 

 

 

 

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.

Share This:

Share

Death – A Difficult Conversation

I hope that our towns and cities can become compassionate communities in which people live and die well. We need to break through our fears, especially in the UK in talking more openly about death.

Share This:

Share

Compassionate Communities

I hope that Lancaster, the city in which I live may become the first official compassionate city in the UK. I don’t mind if it isn’t, but I do hope that many cities choose to take on this mantle.

Here is a beautiful and moving animation of what becoming a compassionate community is about.

Share This:

Share

Overcoming Hopelessness

This guy, Nick Vujicic, is undoubtedly one of my heroes – watch him, and be inspired, challenged and healed.

Share This:

Share

Lessons from the Secret Garden

SEC3If you have never read ‘The Secret Garden’  by Frances Hodgson Burnett, then read no further, go and read that book and then come back! Seriously – it is one of the most beautiful children’s stories ever told and I have just finished reading it to my eight year old daughter.

 

It is a story at many levels, but ahead of its time it reveals the power of our psyche in affecting our physical health and how changing the way we think can alter our wellbeing – both physical and mental. Colin, a rejected and yet thoroughly spoilt boy believes he is going to develop a hunch back and die young. His entire life is driven by anxiety of what might happen and a kind of hatred of himself and the world around him. That is until a girl, who was once very similar to him and a boy, who is as free and loving as any human could be, enter his life and awaken the possibility of transforming hope.

 

I have seen so many patients over the years who believe incredibly negative things about themselves and the world around them. Some of them have evidence to back this up and others most certainly do not. What amazes me time and again is that those who allow their minds and thought patterns to be transformed become much physically stronger and more whole. Those who refuse to change the way they think (because it is actually a choice and a retraining of our thoughts – no one else actually makes us do it) stay as they are and get worse, which always makes me sad. It is not simply about the power of positive thinking. It is choosing to align yourself with a wholly different story, with a different set of imaginings, with hope for the future in place of despair, with love in place of fear.

 

Colin finds the ‘magic’ that helps him to change. The same magic that causes the plants to grow and the seasons to change; that allows creatures to give birth and the birds to sing their songs. The magic that teaches a boy to walk, a girl to reach out, a hardened old man to cry and a father and son to restore a broken relationship.  The magic that allows the place of our greatest pain to become a place of redemptive joy. The magic that allows a human heart to soften and learn to love. It’s what John Newton calls ‘amazing grace’. It’s what I call the Holy Spirit. The dancing One who breaths life through everything and invites us into this same dance. To throw off self-pity and shame and to find life in all its fullness instead. All it takes really is the deliberate choice that we can change and once we open up the possibility, well, truly anything can happen!

Share This:

Share

Healing our Corporate Soul

In my video blog about ‘Reimagining Health’, I talked about the fact that our well being is not and cannot be an isolated, individualistic experience. The truth is that we are part of a Corporate Body (that is a community of people with a physical environment in which we live) with a Corporate Soul (a set of beliefs/mindsets/worldview) and a connection to the Corporate Spirit (which in my view is either the spirit of love aka God or the spirit of fear). These corporate experiences have a massive impact on our individual sense of health and wellbeing, and actually, as we are part of the corporate, our individual wellbeing has an impact on others around us also.

Our Corporate Soul is the issue I want to concentrate on in this post. It is complex and something to which I believe we pay little attention. However, it’s effect on our individual and corporate wellbeing is vast. Take a moment to think about the subliminal messages that come through our various forms of news and multimedia everyday.

“Your life isn’t as good as your ‘friends’ on Facebook”

“You need to be on Facebook or you are missing out on so much”

“Unemployment is being caused by Immigrants – be wary of them”

“Be afraid – people hate our country and are trying to kill us for the ‘values’ we uphold”

“The way our country does things is right and just and those who die for ‘our country’ are never to be forgotten”

“Pollution is rising – we are heading for natural disasters”

“Buy the new car – you need it, don’t worry about the pollution – live for the now”

“The chocolate industry is built on the slave trade”

“You can’t change anything, so keep on eating all the chocolate you want”

“Banks are to blame for the financial crisis”

“We have bailed out the banks with taxpayers’ money, because we need them so much.”

“Really the reason for our national debt is the poor, who claim too many benefits – we should blame them because they are lazy – we won’t bail them out”

“We all need to live longer”

“We can live however we want – our healthcare is free”

“Our children aren’t doing as well as some other children around the world when we measure them against a set of very narrow targets – therefore we need more targets and more testing”

“The only way to keep our nation really safe is to keep the nuclear deterrent – in the end, this is what makes us safe”

“Our armed forces protect us by using violent force to topple regimes which do not suit our national interest. Power vacuums are now left in those nations with untold turmoil and the rise of significant extremism of which we should be even more afraid and need to silence. We will do this with more force. The use of violence make us feel safe”

 

No wonder we are so messed up. We have some very damaging and also conflicting messages coming at us, especially through the (social) media 24/7. When do we stop to ask ourselves how healthy our worldview/beliefs/mindsets are? How much of our life is driven by fear? A fear of want? A fear of lack? A fear of the ‘other’? A fear of loss? A fear of debt? A fear of attack? And how much of this feeds our individual(istic) souls of self-protectionism?

How badly we need some conversations together that enable us to challenge some of our current core beliefs. We will not find a place of health and well-being, happiness or wholeness until we do. We have aligned our lives with the Spirit of Fear and our Corporate Soul is entirely broken as a result. We must realign ourselves with the story of Love. There is so much goodness out there. Can you see it? Only love can drive out fear. Only love can heal and awaken our souls to another holistic way of being.

 

Share This:

Share

Well Cities and How They Can Flourish

I am someone who has many dreams – I mean the night kind of dreams….very seldom would they be a night mare, but they come with incredible detail! Maybe this is because my mind is processing, maybe it’s because I’m a bit weird or maybe it’s because I’m finally quiet and the Spirit of God can talk to me!

 

iuAnyway, one of the things I’ve been thinking about quite a bit is the ‘corporate personality’ of cities. My great friend, Martin Scott, has previously done some work on this. Just as people, with their own history and nurture form their own personality, so too does a place. Personally, I’m a fan of the Enneagram as a way of helping understand who we are, why we are, what our shadow self is like and how to become more our ‘true-selves’. I believe this can also be applied to our towns/cities/regions and nations. If we understand the personality of the place we live in, we can help it become fully flourishing and enable it to become the right kind of ‘gift’ to other places. If you don’t know anything about the enneagram, then I would recommend Richard Rohr’s excellent take on it.

 

 

iu-1Anyway, recently, I had a dream about the city of Coventry (the city where I grew up – I love it!) which I think is a type 4 personality.  In the dream, I was in the New Cathedral (one of my all time favourite buildings) and I was helping to facilitate a discussion with a diverse group of people from all over the city. The discussion took the form of a ‘world-cafe’ (a brilliant technique taught by the ‘Art of Hosting’). The underlying premise for the discussion was recognising that the 3 main ‘gifts’ of Coventry’s personality are as follows:

1) A place of peace and reconciliation

2) A place of refuge and healing

3) A place of creativity, innovation and development

 

And so the question being discussed was this:

 

If Coventry was ‘well’ how would it be flourishing in it’s primary gifts?

I wonder if we connected more with the personality of our cities and asked our selves similar questions, just how different our cities (places) could be? One of my passions is for health and wellbeing……what are the places we live in like – what do they look like, sound like, smell like, taste like, feel like, behave like, when they are healthy and well?

Share This:

Share

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.

Share This:

Share

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

Share This:

Share