Walls and Bridges

lego bridgeOut of the mouths….

….some years ago in a Scottish secondary school, I remember helping to co-ordinate a “team building” exercise with 14 year-old students. A large group of young people was divided into several teams of six. Each team was given a few flimsy sheets of A4 paper and a dozen paperclips. Using only those materials, their task was to construct a bridge between two chairs set several feet apart. The bridge had to be capable of taking the weight of a toy car and the task had to be completed within ten minutes.

Now there’s something for you to try with family and friends some autumn evening when the nights have drawn in and conversation is a bit sparse.

I was reminded of those happy days recently on reading a short newspaper article about a talk Matthew Barzun had given. Matthew, as you probably know, is the US ambassador to Britain and he was addressing members of the Scottish Confederation of British Industry (CBI). The main thrust of his talk was that people, especially people in politics, seem to find it easier to build walls than to build bridges. He may have been thinking of his fellow American, Donald Trump, or, since he was addressing a Scottish audience, he may have been thinking of a situation closer to home. Who knows?

Whatever was the case, he made the point that his son enjoyed playing with Lego and that most people, faced with a pile of Lego bricks, would choose to build walls rather than bridges because it is easier.

He went on: “What is easy is building walls. Anyone can build a wall; building bridges is harder. Building bridges requires you to understand the other, listen to the other and to explore the other’s shore.”

I think I would enjoy an evening in the company of Matthew Barzun.

This summer, there has been a long period of silence from this blog. That’s because here in Scotland the sun has been shining for weeks and it has been too hot to be sitting at a computer. I jest, of course. Meanwhile in the real world, across the UK and abroad, we have heard a lot of strident noise and seen a lot of angry division. We have seen walls – political, metaphorical and racial – constructed between all sorts of groups. So it is refreshing to hear at least one influential voice suggesting that “exploring the other’s shore” might be a more constructive use of our energy.

To return to the young students – I still remember one of them when confronted with his team’s pile of paper and paper clips, saying to me in the direct way that 14 year-olds have:  “What’s the point of this?” Before I could utter the standard teacher’s response, he went on with a smile: “At least we can talk to each other.”

And that’s the point, really.

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At the Stroke of a Brush

At the Stroke of a brush“You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it.”  Harper Lee

There are many ways to try to understand stroke.

If you are a medical professional, you are likely to be primarily interested in the technical aspects of the condition. For example, if you are a clinician in acute care, you want to know what is going on in the brain and specifically what went wrong in the case of the stroke survivor in  front of you; if you are a speech and language therapist, you probably want to know how the person affected can learn to improve the quality of their speech; if you are a physiotherapist, you will want to assess the neurological damage to muscles and how strength and mobility can be improved.

If, on the other hand, you are a professional caring for someone affected by stroke, you will want to meet their needs by trying to see life from their perspective. If you are a carer and a family member, you will also want to support them, while maintaining your own health and well-being – and that’s a whole other area, for another time.

Perhaps the best way to try to understand the full enormity of stroke is to read about the lived experience of those affected by the condition. That is why I want to draw the attention of followers of this blog to a book by a friend of mine, Robert Dalrymple. It is called At the Stroke of a Brush.

I have got to know Robert over the last few years through our voluntary work with the Stroke Association. Robert lives in East Lothian and his book describes life as a stroke survivor in modern Scotland. Considering the challenges he has faced every day since suffering a major stroke in February 1999, Robert has achieved a great deal. For example, I have listened to him holding the attention of an audience at events in the Scottish parliament, and his achievements have been nationally recognised by the charity Headway.

In the introduction to his book, Robert says:

The book has been written in the hope that it will be of some benefit to others who find themselves in a similar position. The style is simple because I am not a writer.

The style is indeed simple – simple and direct, but I would dispute his claim that he is not a writer. His straightforward style is both moving and effective in conveying the daily challenges he faces, and doing so without displaying an ounce of self-pity. The font is large and the layout designed to make the book accessible to those with a visual or language impairment.

Robert’s book is an opportunity to “climb into his skin and walk around in it”.

If you feel it would be of interest to you or someone you know affected by stroke or brain injury, you can obtain a copy by sending an email to me via the contact details on this blog.

 

 

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Deeside flooding – another update

Dee6Readers of this blog may remember that, back in December and January, Deeside was affected by serious flooding. A few weeks ago, I was able to let you have good news about one business that is fighting back.

At the time of the flood, I drew attention to a fund that was launched (unfortunate choice of word) by the Aboyne Rotary Club, and I know that a number of followers of this blog contributed to it. This fund has subsequently helped many people made homeless by flooding and I am reproducing below a letter from the President of the Club which I think is self-explanatory:

Rotary Club of Aboyne and Upper Deeside
Ballater and Deeside Flood Relief Fund Newsletter

This newsletter is to give a brief summary of what Aboyne and Upper Deeside Rotary have been able to do, over the last six months, with the generosity of so many individuals, groups and organisations, to help people affected by the devastating floods that hit the Deeside area at the end of last year.
As well as helping with the emergency relief effort in many practical ways we, within days, launched a fund-raising campaign to help the flood victims of Upper Deeside. The Ballater and Deeside Flood Relief Fund has to date raised over £75,500 and disbursed over £56,500; assisting 109 flood-affected households from Kincardine O’Neil to Braemar.
People throughout Deeside and beyond organised fundraising events, made generous personal donations and contributed to collections hosted by shops and businesses. In addition almost £18,000 came from twenty seven Rotary Clubs from all over Britain, and nearly £12,000 came from supporters of the “Hope Floats – Deeside” Facebook page.
We set up a simple, responsive, totally confidential and non-judgemental process to provide help to people whose homes (principal residence) had been flooded and who had lost possessions.
Many people we meet with have said, touchingly, that it is good to know that somebody cares and the numbeballater floodingrs of thank-you letters bear witness to the very real gratitude from residents to a rapid response for emergency relief funds. The Club has been awarding grants of upwards of £200 according to the amount of damage suffered with the vast majority of grants for £500 as losses suffered have been extensive, especially in Ballater.
The community spirit shown by, and for, Deesiders is second to none. The willingness to help those who are in trouble is quite inspiring, and many volunteers are working as hard now as they were immediately after the flood event.
With over 400 households and many small businesses affected in our area, it is our intention to keep fund-raising for our Flood Fund, as many families flooded out of their homes are still in temporary accommodation. The Flood Fund is also supporting local projects which will benefit the regeneration and resilience of the communities and economy of Upper Deeside.
Aboyne and Upper Deeside Rotary would like to give heartfelt thanks to everyone who has directly or indirectly contributed to the Flood Fund and helped the people of Deeside during this difficult time

Ruth Powell
(President – Rotary Club of Aboyne and Upper Deeside)
1st July 2016

As you can see from the above the Fund is now directing its resources towards local regeneration and resilience projects which will be of benefit to all but have no other source of funding.

Finally, I should say that the fund is still open for donations and if you wish to donate, the bank details are:

Clydesdale Bank,  Aboyne,

Sort code: 82-60-17 Account no 20104922 Relief Fund Account

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A rose by any other name…

Scottish-Stroke-Improvement-Programme-report-2016 - cover“Man” and “stroke” this time, no “dog”. In any case, Archie has just returned from a long walk in the rain and looks utterly miserable as only a whippet can.

In my last post, I threatened to return to the Scottish Government’s annual Stroke Care Audit which was published on 12 July. If you follow that link you will discover that, fresh for 2016, the audit has been renamed and is now referred to by the Scottish government as the Scottish Stroke Improvement Report.

My first reaction on seeing this was to feel this re-wording might be classic political code for “OK, it’s not going to read well so let’s at least make it read pretty“. Also, let’s keep it to the internet this year – no printed copies lying around to scare the horses. Above all, let’s lose that word “audit” – so dull, so last year, so redolent of gimlet-eyed accountants telling us to get our affairs in order. “Improvement Report” – now there’s a phrase that sings of success; future-looking; forward thinking; optimistic. No room for backsliding there. So, Scottish Stroke Improvement Report it is.

Silk purses out of sows ears; roses by any other name; lipstick on pigs. Whether you are referencing Shakespeare or Obama, in the end the fact has to be faced that year after year stroke care targets in Scotland are failing to be met consistently across the country. There are small improvements here, marginal changes there, though, to be fair, acute stroke care has improved very significantly in recent years. But the totality of stroke care, the whole “patient journey” (horrible phrase) from acute admission to long-term rehabilitation and self-management seems to remain depressingly static. Stroke care – all health care – is ultimately a Scottish government, and hence a political, responsibility. Improving stroke care is a stated priority for the Scottish government, so pro-active, passionate political leadership inspiring real progress is required if it is to get the support and resourcing it deserves. Less grandstanding, Nicola, more action.

Am I being too harsh? too cynical?

I have this geekish interest in the audit/report because I have seen the sharp end of this and know that behind the charts and statistics are real lives, real families devastated by stroke, real professionals striving to provide quality care in a system that doesn’t always support them as well as it could.

The report has a foreword by Dr Catherine Calderwood, the Chief Medical Officer, who earlier this year produced what I felt to be an inspirational Annual Report for 2014/15 entitled Realistic Medicine. It is not often you can use the word “inspirational” about an Annual Report, so follow the link above and have a look for yourself.

Anyway, back to the Stroke Improvement Report. The full report contains a myriad of statistics. There is a lengthy Appendix in which each Health Board explains the challenges it faces in measuring up to the stroke care standards – often a lack of staff and/or accommodation. I urge you to read this, as it gives a good insight into the real practical difficulties faced by professionals in our health service.

There is also a two page summary which gives an outline of the national picture. Unfortunately, the summary disguises the fact that there are enormous variations in stroke care across Scotland – a fact which you can only unearth by closely examining the detailed report. Take speedy admission to a stroke unit, for example, one of the key factors in promoting good recovery. This is a target which only 7 of our 29 large hospitals managed to meet in 2015.

On a more positive note, there is a nod this year towards auditing the provision of longer term rehabilitation for stroke survivors, in particular stroke specific exercise. This is very welcome and important for all who survive a stroke, especially for younger people hoping to return to work. Sadly, once again, the report reveals a big variation in what is available across the country.

Thanks to our NHS, if you have a straightforward broken arm, you can get it fixed, get some physiotherapy, get on with your life. If you have a stroke, there is no quick fix and the effects are likely to last for the rest of your life. Providing long-term support for those who survive means not just access to regular exercise, but possibly speech and language therapy or treatment for visual problems or possibly psychological support. In an ideal world we would be seeing that kind of provision for stroke survivors audited as well – as is done in some other countries. Yes, these services are expensive, but then so is doing nothing. Brexit or not, we are a rich civilized country – surely we can do this.

What we mean by “expensive” needs to be defined. The NHS and social care cannot do everything, but the true cost of not providing long-term rehabilitation and care or failing to put the best stroke research into practice needs to be measured and audited as well.

Perhaps after all it is time for some of those gimlet-eyed accountants to take an external and dispassionate look at the totality of our stroke services.

 

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Stroke research, that referendum – and an invitation to you

archie ct2At the weekend, you, like me, may have seen an excellent cartoon depicting a newscaster saying: “Aliens haven’t landed and Elvis hasn’t been found alive. Everything else has happened.”

This sums up well how many of us in the UK felt on the morning of Friday 24 June. The little Englanders and little Scotlanders were apparently in full cry. Our country felt broken and diminished since the vote to leave the EU, and only the shrillest voices seemed to be shouting above the wreckage.

Time to step back and reflect on what can be achieved when countries work together, however imperfectly.

The Helsingborg Declaration on European Stroke Strategies is a statement of the overall aims and goals of five aspects of stroke management to be achieved across the continent by 2015.

1. organization of stroke services

2.management of acute stroke

3.prevention

4. rehabilitation

5. evaluation of stroke outcome and quality assessment

The UK was represented in Helsingborg and as a result of the declaration progress has been made, to varying extents, across Europe in all of those 5 areas above – I will be returning to this theme after the annual Scottish Stroke Care Audit is published next month. But whether you have a stroke in Latvia or London, Edinburgh or Estonia you want to feel that clinicians and others treating you have easy access to the best knowledge and research from all over the world, that they are working within a strong internationally recognized, evidence-based structure and are able easily to co-operate with others across the globe. With the number of strokes on the rise internationally, access for our clinicians to the best in stroke research – and the funds to maintain this research – must not be affected in any way by our departure from the EU.

With this in mind, I am reproducing below an invitation to everyone, whether affected by stroke or not, to participate in stroke-related research being undertaken at the University of Melbourne in Australia. The details were sent to me by experienced physiotherapist, Brendon Haslam, from the university. This is a recognized international study. Any details you supply are anonymous and remain confidential. It is easy to participate on line – I’ve already done so. You don’t have to be in that select group of us affected by stroke, so why not take part? In a small way you will be helping the sum total of human knowledge about stroke…and if you live in the UK, it may take your mind off the referendum:

 

Pain After Stroke

stroke study (2)

Stroke affects people in different ways, and people will often immediately list things such as weakness, speech difficulties, mobility and sensory loss. One thing that is often not talked about as much, or addressed, is pain following stroke, yet the presence of ongoing pain is often described by approximately half of all stroke survivors.  Currently, the most common intervention or treatment used, is medication, but often the medications used can cause fatigue and other issues themselves.

At the Florey Institute of Neuroscience and Mental Health in Australia, they have identified that pain in stroke needs greater understanding, in order to develop effective, targeted treatments for this significant problem for many stroke survivors.  As part of their research, they have developed an online survey, that is looking to provide valuable information about pain in stroke, in order to identify particular characteristics and symptomatic profiles of those that experience pain, compared to those that do not. In developing this study, they have brought together prominent researchers in the areas of stroke rehabilitation, neuroplasticity, sensory retraining and pain sciences.

The survey is done anonymously, and the researchers are hoping to have 1000 stroke survivors participate, both with and without pain. They are also looking to have non stroke participants (such as family members, friends of stroke survivors), in order to make further comparisons.  Participation involves a questionnaire about the stroke, symptoms and pain (if present), followed by some online activities that investigate body ownership/recognition abilities of the shoulder and hand (the most common sites of pain experienced post stroke).  Non stroke participants will answer a much shorter questionnaire, and perform the same activities.

We are hoping that many people will participate from all over the world, in order to get the most effect from this project. The project has ethics approval, and has been endorsed for listing on websites, social media sites of prominent stroke and pain organisations in Australia, United Kingdom, New Zealand and South Africa (and we’re currently having our information considered by other countries).

The study is open until the end of the year, so if you are at all able to participate, please do, and even better, if you can also let others know and encourage them as well. For more information, and the opportunity to participate in the survey, please go to  http://research.noigroup.com/?_p=stls . Or, if you would like to contact the researchers directly, please contact Brendon Haslam (Physiotherapist) at Haslam.b@florey.edu.au or brendonhaslam@gmail.com

Thank you so much for reading this, and hopefully helping us out, and a big thank you to Eric for letting us get the message out there!

 

 

 

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Good news story

Deeside_Books_-amendYou may remember an earlier post in which I wrote about the devastation caused by storm Frank in our local communities. The nearby village of Ballater was particularly badly affected, and many local businesses feared they might never reopen. However, a friend tells me that, partly thanks to a grant from children’s author James Patterson, one business, Deeside Books, is being refurbished and is planning to reopen in the summer.

You can read the full story here.

Bookshops help to civilize our high streets, but often struggle to survive, particularly in rural areas. In the case of Deeside Books, however, we are talking about a bookshop that not only provides easy access to the world of books, but is an integral part of the community  and character of Ballater – to say nothing of the encouragement its presence provides for local authors.

While the shop is being restored, they are continuing to trade on-line and you can visit their website by clicking on the picture above.

Forget your Amazons – next time you are browsing for a book, go to Deeside Books and see what is on offer. Locals have no excuse for not doing so, but followers of this blog, wherever they are, can support this business as well, and bask in the warm glow that they are not only helping a business get back on its feet, but a whole community as well.

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Step Out for Stroke

archie ct2It is that time of year again.

Once more, Master and I will be taking part in a  Step Out for Stroke event – this time at Broughty Ferry near Dundee on 15 May. This involves a 2.5 mile walk along the esplanade, and my personal challenge will be not just to complete the course with Master, but to behave impeccably throughout. As anyone will agree, this is a major challenge for any handsome, energetic young whippet – let alone a ne’er do well like me.

As a follower of this blog, you may feel some mild guilt, but you are under no obligation to sponsor us, though if you wish to do so, you may care to know that everything we raise – every last penny, biscuit and bone – will go to the  Deeside Stroke Group which meets weekly and provides a professionally run exercise class for people affected by stroke and other neurological conditions. Funds we raise are used to purchase equipment and to make the class affordable for all. We get great support from the Stroke Association, and we plug a major gap in health and social care services locally. A great benefit for me is that, by going to this class, Master retains sufficient fitness to accompany me on a daily walk in the woods near our home – good for him, and good for me.

If you would like to sponsor us, click here for details. I’ll let you know how we get on.

The sun will definitely shine beside the silvery Tay on 15 May, so if you live near Dundee (and even if you don’t) and would like to take part in the Step Out for Stroke event yourself, or know of someone – or some dog – who would, click here for full details.

Many barks

Archie (Windwalker Follow Me Home)

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The West Sands Revisited

ES picture“Youth is wasted on the young” – so wrote George Bernard Shaw.

This line floated through my head recently when we two humans – plus dog – were spending a few days in St Andrews at the beginning of March. At the time, we were walking along the broad expanse of the West Sands. (If you’ve never been there, think Eric Liddell and Chariots of Fire).  It was a clear blue morning; a light, bracing wind blew in our faces; there was the cry of seabirds, a shimmer of light over the sea and a distant susurration of the tide. As a student at St Andrews University I must have walked on that huge beach dozens of times, but now in 2016 I was enjoying its luminous breezy sunshine with an intensity and pleasure that I do not remember experiencing more than forty years ago when I was attending that fine institution.

Perhaps when I was younger, I was preoccupied with study (doubtful), or maybe even with girls or some of the other delights on offer. I vaguely recall, after a university ball, skinny dipping at the West Sands, and I suppose that must have been a fairly intense experience – intensely cold, certainly. I also remember being able to run the full length of the Sands. As a youngster I probably just took for granted the fact that the wide West Sands existed as a pleasant backdrop to all the other much more important activities in which I was involved. Perhaps we all do this, when young. What I had certainly forgotten was the extent to which wind-blown sand and salt permeate your clothes, socks, hair and car long after you have left the beach.

Anyway, on this occasion – March 2016 – I found walking along the West Sands to be thoroughly enjoyable, thoroughly memorable. Having survived a stroke, I am, of course, extremely grateful to be able to walk at all, let alone walk miles along a sandy beach. It has to be said, too, that I was with my wonderful wife – it has to be said, in case she reads this and believes I haven’t fully acknowledged the joy I should feel in her presence. Then again, this was our whippet Archie’s first experience of a beach. His lunatic racing about on the enormous expanse of sand was wonderful to behold – sheer, physical joie de vivre. Perhaps we all enjoyed the beach so much because we live in landlocked Deeside, which, however beautiful, cannot offer the huge skies and wide horizons of St Andrews. Perhaps we enjoyed it so much simply because for a few days we were out of routine – away from reality.

Did I fail to fully appreciate St Andrews when I studied there? Almost certainly. Is youth “wasted on the young”, as GBS says? Perhaps – actually, I think that line says more about the wistfulness of an ageing George Bernard than it does about the young. Re-visiting a place one has enjoyed as a youngster stirs up old memories, which we view through the prism of age and experience. Perhaps wistfulness is an inevitable part of that. But I’ll be savouring the memory of our 2016 walks on the West Sands long after the sand and salt have gone from my socks and my car.

 

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Pebbles in the Pond

ES pictureFollowers of this blog will remember that last November I took part in an evening at the Scottish Story Telling Centre organised by the Health and Social Care Alliance: ‘Reading Writing and Your Health – Journeys in Self Management‘. At the end of the evening I had a number of interesting conversations with individuals in the audience. One of these people has now been in touch with me – I reproduce her message below:

Books and Well-being

Guest blog post by an anonymous dyslexic adult.

Books and well-being is a blog series inspired by the Book Week Scotland 2015 event “Reading, Writing and Your Health – Journeys in Self Management.” In it, I share my experience of using books in my self-management journey. Here’s a summary of what each post looks at.

Part 1

  • The benefits that books can have on an individual’s well-being
  • The detrimental effect that an absence of books can have on an individual’s well-being, illustrated by my own experience

Part 2

  • How books can benefit dyslexic people
  • Whether an absence of books could exacerbate mental ill health and make recovery from it more difficult
  • Some book lists and how dyslexic people might use them

Part 3

  • How dyslexic people might adapt the book lists discussed in part 2 to self-manage dyslexia and common mental health conditions

Although these blog posts focus on the dyslexic context, they are applicable to any group or individual interested in using books as a self-management tool.

You can find the first post in the series at http://smns.alliance-scotland.org.uk/2016/03/books-and-wellbeing-part-1.  The other 2 posts will be published over the next few weeks.

I encourage you to follow the links above and to read what she has written about dyslexia and mental health and will write over the next few weeks.

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Scottish Stroke Assembly

stroke logoA first. On 15 March this year, the Stroke Association will be holding its first Stroke Assembly in Scotland. This is an opportunity for stroke survivors, their carers and others with an interest in stroke to meet together, exchange news and information and to hear about the latest developments in stroke research. You can find out more information here, or by clicking on the logo above.

The event takes place in Stirling and is already proving popular, although there are still a few places remaining. There is a very modest charge for the day.

I look forward to meeting many followers of this blog there.

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