Friday 17 April 2015

Joining the Dots

When something big happens in your life, do you ever have the experience of suddenly seeming to hear it mentioned endlessly from the most unexpected of sources? I find it happens to me a lot. Sometimes, of course, I'm sure it's simply that your ear becomes attuned to hearing what it would in other circumstances simply have screened out. Sometimes, however, it's hard not to have the sense of being communicated with directly. What were the chances, for instance, of my turning on the radio in the kitchen for a bit of background noise the other day, and finding myself listening to a programme that described in detail Stereotactic Radiosurgery, the very radical cutting edge treatment I'm due to be having to treat the tumours on my brain in less than a fortnight's time?

The programme was called "Is cancer money well spent? " and it's well worth a listen - though you might have to be quick as I don't know how long it'll be available on i-player. The link is

 http://www.bbc.co.uk/programmes/b05pnsr8

As well as learning more about the 'cyberknife' treatment as it's sometimes called, I learned, as a result of this programme, that I am far more privileged to be able to access it than I had previously realised. I wasn't aware that - while it could clearly be used to radically treat a number of types of cancer - its use is currently largely limited, in this country, to the treatment of lung and brain tumours (the very ones I have) due to the limitations of funding. I also learned that to be half an hour's drive from Preston puts me in the very  privileged position of being in a part of the country where it is easily accessible. I learned that consultants frequently put in requests to have this treatment funded in the full heartbreaking knowledge that those requests will be turned down. I listened to the account of a mother in her 40s who could have been helped by this treatment being unable to access it, leaving her widower now caring alone for their daughter with special needs. I learned how in France, people are routinely treated  for all sorts of cancers with Stereotactic Radiosurgery with a remarkable rate of success. And I was invited to share the dilemma that those who hold the NHS's purse strings have to live with daily; just how do you allocate limited resources in the fairest and most effective way? When to say 'yes' to one person's treatment is always going to mean saying 'no' to someone else's? When the cost of drugs which can extend someone's life by a few months has to be constantly weighed against the provision of treatment that could save life or even prevent illness in the first place?

Over the last couple of months, I'm aware that a number of friends and family have expressed concern at what seemed like a lack of speed in getting treatment actioned for me. I've been touched by and grateful for that concern - especially as there was, a few weeks ago, a sense that we'd had a few administrative blips that might have unnecessarily held things up, and that is definitely something to be assertively zero tolerance about! But I've also found myself wanting to challenge what so many of us fall into especially where the NHS is concerned - a sense of absolute entitlement; the sense that if anything happens to us or to a loved one, it's our unassailable British right to expect the very best treatment money can buy and expect it without delay. Here I am, just 2 months after diagnosis, preparing for the very best treatment that could possibly be offered to me in less than a fortnight from now. How can we be anything less than overwhelmingly grateful for that?

Every day the news bombards us with stories of the funding crisis in the NHS, but when something happens to us or our loved ones we find it near impossible to join the dots; to realise that a funding crisis might just mean what it says - not enough money to do everything we'd like to do for everyone on the schedule we'd like to do it. And nor are we joining the dots about what it means to be victim of our own success - a nation where the exponential growth in average life expectancy means we're all going to become much more expensive to maintain and care for through our old age. The money's running out, people! A week back in February on Lancaster 's Acute Medical Unit was an education I won't forget. Watching more elderly, distressed people, many with dementia, arriving to be assessed than there were staff available to assess them. Than there were staff to keep them safe from climbing out of bed, falling, hurting themselves. Than there were staff to feed them, let alone listen to and reassure them. And that was only the dementia crisis.

So to everyone who's tempted to frustration by what may look like a lack of urgency when it comes to the care of ourselves or our loved ones, I want to say "Join the dots". We're in a crisis. This is not the NHS's crisis, it's our crisis, and it's about what we decide as a society are our priorities, and what we decide as individuals our own share of responsibility for our national priorities are. In the run up to an election,if our decision about how to vote is motivated principally by self interest as to our own tax bills, then the NHS will not be there for us when we need it. And if we think casting our vote for one party or another is where our responsibility begins and ends, then we're deluding ourselves. There is no entitlement to the best of everything just when we need it any more. If we want an NHS, then we have to take responsibility; make ourselves informed; campaign; fund raise; protest unfair changes; support the rights of NHS staff; care. Because once we lose the NHS, we'll never get it back.

Once you start dot joining, of course, there's no end to the sobering places it can take you. The excellent care I am being offered comes at a price, and that funding will not be there for someone else. I'm not beating myself up about that, but it's important I'm aware of it, and that it deepens my gratitude and my determination not to waste a second of the precious life I have, however long or short it turns out to be. Or again, the compassion we feel for the victims of tragedy we relate to easily comes at a price of dehumanising others we deem less important. It's beautiful to read about the Memorial Service for the victims of the Alps plane crash today in Cologne Cathedral, with candles and wooden angels commemorating each precious victim by name. It's chilling to have to  search the BBC website for any references to the 400 - odd, many of them children,  who drowned in the Mediterranean earlier this week as they attempted to flee from lives whose horrors we can barely imagine. There names lie, forgotten, with their bodies, on the bed of the ocean.  Is any of them less precious?  Any less worthy of a candle or an angel?

It's time we all began to join the dots.


9 comments:

  1. I am so glad your situation has given you a platform to share your writing with us all. We are all the richer for it, Debbie. I wish you'd been blogging long since! Food for thought, as always, and utter agreement.

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    1. Thank you dear Emma, especially for the encouragement to write. It's good for me, and it means a lot to know that it's connecting with where you and others are too xxxx

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  2. How very true! Thank you for your blogs which are always thought provoking! Debbie you are a truly special person! X

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    1. Thanks for reading Shepherds xxx

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    2. Thanks for reading Shepherds xxx

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  3. As ever, thought-provoking and very clearly put. I wish I thought there were politicians out there who would risk votes in order to promote compassion.

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    1. Thank you Ruth. Yes indeed. Such politicians become harder and harder to find, especially as the least sniff of possible power seems to corrupt not only individuals who may well have started with high ideals, but every facet of the worlds in which they have to operate.

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