Printed copies available

Richard died on April 21st 2014 at home with his family.

Due to the interest in this blog – printed copies have been produced and are available from: 

HEART – Bennett Road, Headingley, Leeds, LS6 3HN
or contact Jane Williams at jane.williams54@ntlworld.com

A suggested donation of £5.00 (+ £2.00 p&p) will go to Richard’s chosen charity: Khiraule Health & Education Project in Nepal

Many thanks,

Jane, Emma & Alex

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My final blog

This is my final blog. It’s not that I’m about to peg out. It’s possible, but unlikely just yet, though it isn’t going to be long. I’d rather finish with a clean ending. My world has rapidly closed in over the last few weeks, and I’m on the final faltering steps of what has been an amazing and unexpected journey for the last 14 months. Views have largely gone, though not entirely, coming now from the love and warmth of my family, and friends that call round.

After this Jane and I will keep people informed through email – so if you are not receiving direct email from me, but would like to be on the email list for information, please let me know.

I have mentioned to a few people about doing a blog on inequality and football, a companion to the earlier inequality blog. That’s not now going to get done. But there’s one anecdote that I’d like to include here. It was my granddad who first took me to watch Halifax Town (and to County Cricket at Bradford Park Avenue). I was probably about 6 or 7. My Mum told me she’d once been with him to football, but was so embarrassed by his shouting that she never went again; to me it was hugely entertaining. His abuse was never targeted at opposition fans or opposition players, or even the referee. It was targeted at our team and particularly the poor goal keeper seemed to cop it. One favourite shout, I still remember, was “ We pay thee ten quid a week to keep ball out a’t goal. I could board it up for less na that.” With hindsight clearly its nonsense: at the time I thought it hilarious.

I thought long and hard before starting doing a blog and I’m very glad I did. It’s been very therapeutic for me and people seem to have appreciated it. My thanks for all the comments, messages etc. that have resulted. They have helped me on this journey. It is interesting how the medium of this blog has enabled me to have very different conversations with people and reconnect with people. I have been very touched at how much people have opened up to me through it.

Finally, I’ve always felt it a privilege to live in a country with seasons and I particularly love the changes from one to another. In a contrary way Spring seems appropriate for where I am. It’s a time of renewal, reawakening, new birth; so it feels to me a good time to leave some space!

 

 

 

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Farewell You Northern Hills…..

I’m in the Lake District! I couldn’t bear the thought of not seeing the mountains one more time, so here we are. Jane and I are here for the week, sharing the first weekend with Alex, Emma and Will (Emma’s partner) and the rest of the week with two good friends from London. Once again the care services have pulled out all the stops to enable it to happen. I have a syringe-driver attached permanently putting in a particular drug. This needs changing every 24 hours, in Leeds administered by the District Nurse team co-ordinated by the hospice: a fine example of voluntary sector and NHS working well together. The Leeds hospice arranged for a hospice here to deliver the care this week. The nurses come to our rented house every day, and are doing it with a genuine delight in enabling me to do this trip.

As at home, I’m having good days and not so good days here. On Sunday we got out into the Langdales with Alex and Will managing to push me in a wheelchair up a one in four hill to Blea Tarn. I did walk the steepest bits down! What a treat to see Crinkle Crags, Bow Fell and all the Langdales. I suffered the day after, but it was worth it. Tuesday we got out in beautiful evening light. It’s a time of day I’ve always loved, with the shadows of crags cast onto sunlit fells invoking memories of returning, tired, after long a satisfying day on the fells. Today we took in the Newlands Valley, Buttermere and Borrowdale. It’s an emotional week with a mix of the joy of being here, the memories it provokes of the wonderful times I’ve spent on the fells, with deep sadness knowing it will be the last time I will see them.

I don’t know what the definition is of an invalid, but I’m sure I’ve now become one! My mobility is very poor, I certainly can’t go out on my own, and some days very basic tasks are difficult. Not long ago I was dreading this bit of the journey but now I’m here it’s not as bad as I feared. I seem to have an inherited pragmatism – almost certainly from my mum. And of course helped by the love and care of my wonderful family and friends as well as the care services.

In a recent blog I spoke of me living with cancer and not battling it. This was reinforced by a further thought I had on this. The cancer is killing me, but ‘it’ makes no gains from so doing. It too will die when I die.

The mystery of the Armorial Bearings mentioned in my last blog is now solved, and I can thank my long standing friends John and Jenny for their wonderful creativity – which continues to make me smile.

So there we are: a bit of a random collection of thoughts this time, but wanted to bring people up to date. My blogs now are probably going to be shorter. Please do let me know if they descend to incoherent ramblings!

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A day at the Palace

Well, against the odds, I made it to collect my OBE last Friday. It wasn’t until Friday morning that I could be certain I was going to make it. But thanks to the help of a lot of people and some mind over matter, I felt good. The palliative care team here pulled out all the stops to get me there, including organising back-up in London should I require it. Though not needed, it was good to know it was there.  My friends in London, Jane, Jen and Steve, did everything to make thing run smoothly, and of course Jane, Emma and Alex did all they needed to get the old man there! The Palace had organised a wheel-chair and support should I require it – as it was, I was able to walk the whole thing – more walking than I done for weeks before – and since! And on top of that the sun shone all day.

The organisation of the event was extraordinary. The upper-classes were out in force with that easy charm they can do so well. They made us feel very special, carrying out their tasks with efficiency and humour, whilst also making everything run on time with military precision. The number of staff on duty was astonishing – if it had been any other public service there’d have been a lot of tut-tutting about over-staffing! Charles was the medal-pinner, and I was able to have a brief chat with him about tenant management! As a family we had great fun, hopefully combining respect for the occasion with more than a hint of irreverence.

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There was of course a price to pay. I was wiped out on Saturday, and I’ve never felt as exhausted in my life as when we arrived home in Leeds on Saturday evening after a difficult train journey home. But there was an uplifting surprise pinned to our door – a beautifully made ‘armorial bearing’ based on what I’d said in my February blog (‘A new phase…with a gong’). As yet I don’t know who did it: prime suspect number one has now been ruled out. So whoever it was (and please do let me know) I just want to say how magnificent it is, beautifully conceived and constructed. You’ve got the job!

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Since then I’ve not had a great week. I have good days and bad days, and often good half-days and bad half-days. We’re still trying to get the right balance of medication, and my energy levels have dropped with my weight. The care services continue to be excellent, doing all they can to make me as comfortable as possible. Each new stage takes a little while to come to terms with it. I feel I’m there with this current stage, and with the continuing wonderful support from family, friends and the services I’m feeling calm and ready to face what  comes next. My last blog generated a lot of comments on the blog, e-mails, tweets, cards, texts and other messages. Thanks for these – they mean a lot to me and remind me of what a wonderful supportive wider community I belong to.

 

 

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Moving on

I have now definitely moved into a new stage with the disease. It was confirmed last week following a scan that my recent weight-loss, sickness and tiredness means what I already knew from my “gut instinct”! So I’m now off chemo, and have been “signed off” by the oncology department. Though it’s a relief not to have to go for more poisons to be pumped into my body on a regular basis, there’s also a feeling of loss in no longer trying to limit the disease. Overall the oncology unit has done a really good job, and I’m grateful to them for keeping the disease at bay for so long, and enabling me to do some amazing things over the last year.

I’m now under a palliative care team based at a hospice handily placed literally round the corner from where I live. They will help me manage the symptoms as the disease develops and help me through the latter stages of this journey. It’s been interesting listening to the debates on assisted dying, in response to Lord Falconer’s bill on the subject. I can see all sides of the arguments, but can’t help thinking that as my current good days become similar to my current not-so-good days, and my not-so-good days become worse days, then subject to discussion with family it would be a dignified and attractive option to choose to go without lingering on. I may of course feel differently when the time comes!    

I’ve written before about me not living with regrets regarding the work I’ve done. I feel very fortunate that I don’t have regrets about any choices I’ve made in life. That’s not to say I don’t wonder what might have happened had I chosen a different path at various junctions along the way: but I’ve always made the choice and gone with it. The same cannot be said regarding regrets for the future! In his final days, Iain Banks wrote a list of the things he regrets he will not witness, and I thought it would be therapeutic for me to do the same. I’ve not included obvious ones relating to family and friends. And I’m doing two lists: one of those things I know I won’t witness and one of those that it’s probable I’ll miss but I’ll retain a bit of optimism! So here goes.

Things I regret I’m not going to see / do:

  • the current incompetent and obnoxious government voted out of office
  • Halifax Town play at Wembley
  • complete the Lake District Wainwrights (this was always going to be a long shot!)
  • visit Khiraule village in the Nepalese Himalayas
  • Richard Branson’s family go into space (though I understand they are planning to come back)
  • Trident scrapped
  • England win back the Ashes
  • watch an opera at La Scala

Things I regret I’m probably going to miss:

  • The Grand Depart and Le Tour going through the Yorkshire Dales
  • Headingley’s first Festival of Ideas that I instigated
  • promoting at the Festival my idea for developing an annual car-free, cycle friendly day in Headingley
  • the Scottish referendum (it’s likely to be a No vote – but even so major constitutional issues will be / are being raised that I think have the potential for a massive overhaul of British politics. I think I now favour a North of England Parliament -and of course other regions – with devolved powers and a much less powerful Westminster Parliament).

That’s it for now. I’m now focussing on getting to London this afternoon for tomorrow’s investiture, feeling humbled by the amazing efforts of family, London friends, and the palliative care team to get me there in one piece!

 

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A new phase…….with a gong!

My disease has moved into a new phase. I suffered pains and sickness just before Christmas, and though I recovered, I’ve had further episodes since. I began a 2nd round of chemo on New Year’s Eve, but that has been on hold for a week because of a longer episode of illness last week. This resulted in me having a syringe-driver attached administering (successfully) pain and sickness relief. Since Friday I’ve been taking this orally, with side-effects of tiredness worse than I’ve ever had under chemo. Hopefully the chemo will re-start on Monday. So, overall the landscape on my journey has changed, the path’s got a little rougher, and the view’s not what it was!

The other slight inconvenience I had was picking up MRSA somewhere along the way. This isn’t a problem (about 30% of us carry it without knowing), but it means I’ve had to be in isolation when in for chemo. It’s thought I picked it up at The Christie. (What – not just MRSA but a Lancastrian strain, said one horrified nurse!) I’m now clear.  

All this has happened during a period of anniversaries. As well as Christmas and New Year, I’ve had a birthday and passed the 30th anniversary of when Jane and I first got together (we’ve been happily unmarried since then)! I have passed the anniversary of my first admission to hospital and the operation that discovered the cancer. Coming up shortly will be the anniversary of me finding out that it’s incurable. But all these fall lightly upon me. In some ways they provide markers that at times in the last year I’d thought I might not ever get to, but really they’re just dates on a calendar and I’ll continue to look forward rather than back. My current health uncertainties help me focus on the moment more than ever!

A good friend recently bought me a copy of Christopher Hitchens book Mortality. It’s his reflections on having a terminal cancer diagnosis, and he writes beautifully about it, often reflecting my own thoughts on a range of matters. One of the things he discusses is the language of cancer, something I’d been given to reflecting on recently. We’ve moved on from the days of the Big C where somehow to mention the word cancer risked immediate division of cells. But we do talk about fighting cancer. People who die of cancer are often said to have lost a long battle. Some even defeat it.  It’s as though cancer is an invading alien force that enters the body and has to be tackled. I have to say I don’t see it like this. I don’t feel to be battling the cancer. If I am, I know that there’ll only be one winner in the end, and it won’t be me. I hate losing, so best not to play that particular game!  I prefer to think that I am living with cancer rather than fighting against it, in the best way I can, enjoying life as much as I can, and with as much dignity as I can muster.

As for the gong….some may not have heard that I was awarded an OBE in the New Year’s honours list. I’d heard in November, when it came as a big surprise. I’ve known a few other republicans accept such awards, so that gave enough excuse not to even think about refusing it. I know most of these awards go to people who have done amazing things (I cited a couple when I worked at DCLG) and feel very honoured to be thought of in the same light as some of these people. The way I (and a few others) have worked over the years rarely gets recognition, let alone honoured. So I hope that the OBE is in part recognition of the value of a community development approach to renewal and engagement. I’ve had some lovely messages since the announcement, and interesting letters. The best is from the Garter Principal King of Arms, telling me I am now eligible “to petition for a grant of Armorial Bearings”. I’ve been thinking of what my coat of arms might include: as a minimum it would need a CND symbol, walking boots, a white rose, a football, the Yorkshire Dales, Halifax, and a positive image of (tenant controlled) social housing. Any creative Armorial designers out there?

And finally, in this shorter than most blogs, lots of thoughts this week about the wonderful and inspiring Pete Seeger. To everything there is a season……

 

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Reflection on Inequality

Except for its greater prevalence amongst older people, cancer isn’t a discriminatory disease. It affects men and women, all ethnic groups and all social classes. Forms of the disease are gender-specific or more prevalent amongst certain ethnic groups. And some are life-style related, with certain cancers more likely amongst poorer people, and others more likely amongst better off people. You don’t get a full sense of this in a ward of cancer patients, as I was at The Christie. There was a wide cross-section of ages, characters, and variations of the disease. There was, I suspect, a wide income variation amongst us, but missing was a stratum or two of social class – those with private health insurance or who could afford private care. I can’t imagine these people get any better treatment or more professional care, though no doubt they get a lot of frills and more privacy for their money (thus missing out on the comradeship that existed amongst us as we came and went through our various operations and recovery).

All of this leads not so neatly onto some reflections on social and economic inequality. This won’t be a particularly well-researched academic discourse: there are better places to go for that. It’s an attempt to set out some my thoughts and feelings on what is, alongside climate change, the biggest issue facing us today. As we bow at the altar of economic growth, we fail dismally to address adequately either of these issues.

Despite Boris Johnson’s recent intervention I sense a slowly developing recognition that our growing economic inequality isn’t a good thing. Indeed, this developing recognition could have been a major factor behind Johnson’s “in praise of elitism” speech! Robert Shiller, one of this year’s of the Nobel Prize winners for economics, acknowledges inequality to be the most important problem that we are facing today, and in this country support for the living wage is growing amongst politicians and employers. Tax avoidance by the rich, though of course still widespread, is frowned upon now more than for many years. And in Switzerland enough citizens were concerned about economic inequality recently to force a referendum on it.

But debates amongst our politicians about fairness and inequality rarely acknowledge that we must address incomes at the higher end of the scale as well as at the lower, and that we need to look beyond just incomes. Governments over the years – here and abroad – see economic growth as the answer to all problems, still holding to the misguided belief that somehow we will all benefit from burgeoning incomes higher up the scale. 

 For some time now I’ve followed the work of Richard Wilkinson and Kate Picket. Wilkinson’s The Impact of Inequality: How to Make Sick Societies Healthier presented evidence that  however rich a country is, it will be a more dysfunctional, sick and unhappy society if the gap between social classes grows too wide. He showed that poorer countries with fairer wealth distribution are healthier and happier than richer, more unequal nations. The Spirit Level[i] takes this further. There’s not space here to go through all their arguments and evidence, but they make a strong and coherent case that more unequal societies are bad for everyone, rich and poor. The Equality Trust[ii] has been set up in its wake to provide further research and promotion.

To me, this debate is about what sort of society we want to live in, what values we think are important. It’s a debate that the political leaders of the major parties are reluctant to hold except within narrow parameters that serve their particular interests at the time. Yet what would be the answer if people in this country were asked if it is right and fair that some people – CEOs of companies, entertainers, people who buy and sell money, footballers – earn millions of pounds a year, whilst other people – who clean hospital wards, serve us in restaurants, look after our under-fives – earn less than £15,000 per year? I suspect that the vast majority would answer an emphatic no. What would be the answer if people were asked if it was fair that women’s pay for full-time work is on average £5k less than men’s? No again I suspect.

Inequality is more than just about salaries “earned”. Inherited wealth does much more than maintain the status quo: it exacerbates the problem (just 20% of inheritors receive 76% of the total inheritance given), and is conveniently ignored by those (like John Major and David Cameron recently) who bemoan the lack of “upward mobility”. Inequalities are also maintained and enhanced by pensions that give more to those that already have, and by the two-tier services we run in health, education and housing. It’s unlikely (yet) that private health care provides better treatment, but it does enable people to jump waiting lists for certain treatments. The two-tier education system ensures that more resources go into educating the children of the wealthy, thus enabling parents to “buy” their children into better higher education and jobs. In housing the recent subsidies to owner-occupation through help to buy is just the latest in a long line of initiatives that assists and promotes the owner-occupied sector, yet at the same time the myth is perpetuated that social housing soaks up tax-payers’ money. The richest richest 10% in this country have five times as many rooms per person as the poorest 10%, putting the bedroom tax into perspective. Evening this out a bit would go some way towards solving the housing crisis.

I’m not going to pretend I have immediate solutions to these issues. Yes, the tax system could be made more progressive. Yes, more employers could take up the living wage. Yes, we could stop private schools gaining tax benefits through charitable status and yes, we could equalise subsidies across the housing sectors. All this would help, but overall won’t have much impact other than perhaps slowing down the rate of growing inequality. And politicians aren’t going to make even these changes unless they think a significant proportion of the population support them. Yet we feel helpless, that there’s nothing we can do about it, it’s just the way things are.

Somehow we need to create the conditions by which people in power will seriously take up the issue of inequlaity. The living wage campaign provides an interesting example. This didn’t become popular through policy papers, academic research or political speeches. It began with working people in the East End of London finding they struggled to have a decent life even with more than one minimum wage coming into the household.  So, with support, they organised and campaigned and raised the issue. Work by the Centre for Research in Social Policy, funded by Joseph Rowntree Foundation, set out calculations for a Minimum Income Standard, and gradually local campaigns sprang up throughout the UK resulting in a national movement for change. This was a specific campaign with clear, well thought-out, very reasonable, demands. And it’s been very successful.

A campaign for greater equality is more nebulous, so perhaps needs more specific targets. The Swiss referendum was to create a law to make it illegal for any company to pay anyone in a month more than the lowest earn in a year – in other words no company could have a low to high salary ratio more than 1:12. Not surprisingly the referendum proposal was voted down, but at least they had a debate, and focused attention on what in some companies is a 1:250 ratio. Maybe as a start in this country we should campaign for all companies to publish their ratios, and for no public-funded organisations to surpass a particular ratio. I don’t know what a reasonable ratio would be. The TUC argue for a maximum of 1:20 which would mean a company could pay the lowest paid worker £12,500a year with a top earner taking home £250,000. It’s hardly socialism, but it would be a start!

We’ve a general election in about 18 months. The election will be fought on who can best manage the economy, reduce the deficit and achieve economic growth, even though that growth is founded on consumerism and encouragement of greater personal debt. I like to think that we can change that debate, not to how we can bash the rich but to one about what sort of society we really want to live in. Greater income equality is crucial to this: but I’d hope we can take the debate further even than one about wealth, economics, welfare, service delivery, to encompass a range of things that might help create a more contented society. (There isn’t time to develop this part of the theme now, but I was struck by a recent report on city living that those who walk or cycle to work are much more contented than those who drive, particularly those who drive some distance. Let’s throw that into the discussion how we make our cities and towns better places.  Hey, we may be able to do a bit towards reducing CO2 emissions at the same time; a win/win for all!) 

I don’t have any confidence in any of the major parties going into the election with fairness and greater equality at the very core of its policies. But maybe, just maybe – with some campaigning, questioning and social media noise – we can at least use the occasion to start developing and promoting a value-based vision of a fairer society.

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[i] The Spirit Level: Why More Equal Societies Almost Always Do Better by Richard G. Wilkinson and Kate Pickett, published in 2009 by Allen Lane.

[ii] The Equality Trust http://www.equalitytrust.org.uk/

 

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