Christmas Day 2013

012The minor extent of our storm damage – one tree down; a new fence broken; an escape route for Archie.

 

 

 

008Christmas presents opened.

 

 

 

 

 

017Fooling about with a Christmas toy.018

 

 

Merry Christmas to all readers and fellow bloggers

 

 

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Celebrating the Charter

ES pictureThere has been a long silence on this blog, for which I apologise.

On Wednesday evening of this week, I took part in an event  held at the Scottish Parliament and hosted by Dennis Robertson MSP, to celebrate the publication of the Charter for People Living with Stroke in Scotland – 10,000 copies of this have been distributed to individuals and organisations across Scotland and there is also a website which you can visit by clicking here or on the link above. The website explains the rationale behind the Charter – the Charter itself is published in an accessible format in print and on-line. There is also an aphasia-friendly version on the website.

It has been a privilege to be part of the small sub-group of the Cross Party Group on Heart Disease and Stroke which drew up the Charter in consultation with individuals and organisations across Scotland, and with the wholehearted support of the late Helen Eadie MSP, who chaired the group, and whose absence at Wednesday evening’s event was keenly felt by all present. What has been particularly encouraging to me as a layman, is to see health and social care professionals across a number of disciplines working collaboratively on this project. If long-term care and rehabilitation for stroke survivors is to be effective, it is exactly this kind of co-operative working that is needed – with support from our politicians, who ultimately control the strategic direction and, importantly, purse strings of health care in Scotland.

Of course, a piece of paper or images on a website can do little on their own – if the Charter is to fulfil its purpose of empowering stroke survivors, their carers and representatives to seek out services from health and social care then it needs to be distributed as widely as possible – you can do your bit by forwarding the website link to someone who is affected by stroke. One in six of us will have a stroke, so there is almost certainly someone you know who might appreciate this information.

I remember only too clearly the feeling of confusion and isolation that I felt on being discharged from hospital and trying, with my family, to deal with a life utterly changed. There is professional support out there, but you have to be proactive in seeking it out at a time in your life when it is very difficult to focus on doing so. If the Charter helps even one ST830509or two stroke survivors or their carers to feel empowered to seek help, it will have served its purpose.

Meanwhile, Archie is growing in size and energy by the day – here he is helping Master to enjoy a stressful Scotland rugby match after a long walk in the woods.

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Helen Eadie

ES pictureThe MSP Helen Eadie has died.

I mentioned Helen in a number of earlier posts (see her name in the list of tags at the side of this blog). In addition to being the well-respected MSP for Cowdenbeath, she chaired the Scottish Parliament’s Cross Party Group on Heart Disease and Stroke with care and compassion. She was a major inspiration for and supporter of the Charter for People Living with Stroke. I know she was particularly proud of the way this Charter had been drawn up collaboratively through the Cross Party Group. Helen was important to her family and they to her, but in addition there must be many of her colleagues and constituents who feel they have lost a friend and ally. She had good working relationships with fellow MSPs in all political parties. When you saw her at work you knew you were in the company of a politician who cared above all about people and their real life concerns.

It was a privilege to have known her and to have worked with her for a relatively short time on one of the many worthwhile projects in which she was involved in her long career in Scottish politics. Her compassion and determination to help all who sought her advice and support will be greatly missed.

With her death, the NHS, health charities and stroke survivors in Scotland have lost a loyal and influential supporter.

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Rodelinda

RodelindaTo the Deeside Community Theatre for a production of Handel’s Rodelinda by Scottish Opera. They are on tour throughout Scotland until 2 November. Yes, even here in the depths of rural Aberdeenshire, we are sometimes touched by high culture.

You may not be a fan of opera, but for me it is hard to resist a couple of hours of Handel’s rich, cut-glass harmonies, with professional singers and a baroque ensemble – all for a tenner.

Rodelinda is an opera I had never heard before and, amongst other things, it features two parts for counter-tenor. Any doubts I had about counter-tenor singing were dispelled by the brilliant duet between Rodelinda (soprano) and Bertarido (counter-tenor) in the second Act. Go and listen to a recording of it for yourself if you don’t believe me – if you want to listen to a version I tracked down on YouTube click here.

There are two drawbacks to our Community Theatre. One is the  small performance area – ScottishOpera adapted this brilliantly with a superbly designed set and excellent use of space by the singers. The other is the rather cramped seats which leave my backside throbbing along with the music by the end of the performance – but you can’t have everything. When the opera was over, we were ejected into a crisp autumn Deeside evening rather than a city street, and that’s worth a bit of discomfort.

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Charter for People Living with Stroke

ES pictureAs promised in an earlier post, I am including a link to the Charter for People Living with Stroke: you can view the Charter here .

For those living in Scotland who have survived a stroke, leaving hospital and re-entering the world can be a confusing experience. The Charter for People Living with Stroke aims to make clear what should be available in terms of support from the health and social care services. It will be widely distributed to Health Boards, local authorities, hospital stroke units and MSPs later this year.

I wish something like it had been available when I was discharged from hospital in 2004.

The Charter has been put together by members of the Heart Disease and Stroke Cross Party Group, which is a committee of the Scottish Parliament, chaired by the estimable Helen Eadie, Labour MSP for Cowdenbeath. Cross Party Groups provide a non-political forum for discussion of important issues related to the work of the Parliament. I was privileged to be a member of the group which drew up the Charter. The group included stroke survivors, representatives of stroke charities, stroke clinicians and politicians. As you can see by clicking on the link above, the Charter is expressed in an accessible format and this was done by a professional speech and language therapist. This should make it available to the many stroke survivors who are affected by aphasia and other language difficulties.

The Charter has been endorsed by all the major professional organisations and stroke charities in Scotland. It is founded on the latest stroke research. While it does not have the force of law, the Charter gives an indication of what should be available in terms of professional support to stroke survivors living in Scotland.

The Charter for People Living with Stroke is a great example of what can be achieved when people with different skills and professions collaborate to achieve a common goal – in this case, to help stroke survivors begin to make sense of the support they can receive when embarking on the long road to rehabilitation and recovery from stroke. It is not perfect, or finished, but importantly it now exists.

And of course I cannot resist providing you with an update on the progress of Archie, one week on. Click on the picture below to view him in full technicolour splendour:

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Windwalker Follow Me Home

036Windwalker Follow Me Home has entered our lives. We have named him Archie. The ghost of Hamish looks on with approval from the distance.

The first thing that we notice is that he is very, very small. He is eight weeeks old and a miniature fawn and white whippet whose soft little body has not yet grown into his long, gangly legs. There is a whiff of puppy about him – well, a whiff of the other six puppies and his mother with whom he has lived for the first eight weeks of his life. Throughout those eight weeks he has been nurtured with care by the breeders – our responsibility now is to let him grow and flourish in our home as we would with any small creature – dog or human.

031Already he is adapting to his new world, by sniffing, exploring and rushing about. Nothing is done in slow motion. He races around our kitchen, bullying an old sock. He is suddenly at your feet, nibbling your toes then looking up, innocence and blue eyes. At night he howls briefly in the dark, longing for the companionship of his siblings, bemoaning the fact that he’s stuck with a couple of oldy humans.

038As you can see, no expense has been spared in providing him with toys. He has already found the beds scattered around our home where Hamish luxuriated for years. As he breathes their scent, I wonder if he says to himself, “Another dog was happy here – perhaps I can be happy here too.”

I certainly hope so.

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Bridging the gaps

ES pictureA colleague has sent me this link to an article in the Nursing Times which serves to highlight two major gaps in stroke care:

1. The growing gap between the improving quality of acute stroke care in hospitals and the pitiful level of rehabilitation available through the NHS and social care on discharge from hospital

2. The gulf between the aspirations of dedicated professionals and what is provided in reality on the ground by way of rehabilitation for stroke survivors.

If you want to read the words of one of those professionals expressed with some passion simply click on the Contribute to this Blog tab above.

Meanwhile in more upbeat news, the George Mackay Brown Fellowship has decided to award a “Highly Commended” to my short story, Spirit of Fako. In due course, I will add a link to this blog which will alow you to read the story.

Today the press and other media are full of reports that exercise after stroke and heart attacks is as beneficial as medication – this feels to me like a statement of the bleedin’ obvious – but a word of caution. Every stroke is different – and this is not always something that is brought out in media coverage. For example, there are many stroke survivors out there who are very limited in the amount of exercise they are able to take. For them it can be quite frustrating to read such reports. Then again, there is no doubt that exercise is a great way to attack that other curse of stroke survivors – depression. I wonder how many GPs will now prescribe exercise as something to be taken alongside medication.

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Wednesday 18th September

ES pictureIt was the best of days – it was the worst of days.

On Wednesday afternoon (18th September) the warring tribes of the Scottish Parliament met in the chamber to debate Scottish independence in recognition of  That Day – Referendum Day 18 September 2014. That Day is exactly a year away and our tribunes were locked in a clash of fixed positions that look as if they are likely to be set firm for the next 365 days. How much they will engage and inspire people outside the world of politics remains to be seen.

Arriving at the Parliament building, I had naively supposed that the long queue stretching from the entrance back round into the Royal Mile consisted of people thirsting to listen to this debate. In fact, most of those people were queuing for a sighting of the Great Tapestry of Scotland, which has been on display in the foyer of the Parliament throughout September (well worth viewing, by the way).

As I had an appointment with an MSP, I was glad to be ushered to the front of this queue by a friendly policeman. Later, with plenty of time to spare before the meeting of our Cross Party Group, together with my Stroke Association colleague, Elspeth Molony, I took the lift up to the debating chamber to listen to some of the independence debate. Considering that this was the Big Debate, Scotland’s Future, etc the public galleries were not particularly full. The debate consisted of a number of set speeches from fixed positions (see above), but what was notable to a first time listener-in was the background braying, heckling and shouting, particularly, I have to say, from the SNP ranks. Perhaps they were the loudest, simply by virtue of their larger number. Weren’t we promised that our shiny new Scottish Parliament would spell an end to Yah-Boo politics?

Later that evening, in the more tranquil setting of Committee Room 5, the Cross Party Group on Heart Disease and Stroke met under the calm, efficient chairmanship of Helen Eadie MSP. The committee agreed to endorse the Charter for People Living with Stroke – (click on the link to view). It will be formally launched later this year and distributed widely throughout Scotland – more later.

We then heard a most moving presentation from Dr Lisa Morton, who lives with congenital heart disease,  and the efforts to improve routine medical support for sufferers of this condition – a reminder to all of us that Scottish Independence and stroke care are not the only two Big Debates out there. It was also a reminder that, when away from the grand stage of the debating chamber, and with co-operation rather than confrontation, our Parliament can actually achieve something worthwhile.

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Catching up

ES pictureI am sorry. Sorry for the long gap since any new entry appeared on this blog. But then sometimes silence is good, and it is not that I have been idle during this warm pleasant summer.

Regular readers of this blog may remember that some time ago I wrote about the Scottish Parliament’s Cross Party Group on Heart Disease and Stroke. I have been a member of a sub-group of the CPG which has been steadily working towards a Charter for Stroke Survivors in Scotland over the last few months. This group has included health professionals and representatives of stroke charities. In drawing up the Charter we have gone through several drafts as we tried to gain positive endorsements from charities and the professional bodies representing clinicians. I am pleased to say that we will be presenting the Charter to the Cross Party Group on Heart Disease and stroke later today, hoping to obtain their approval for the final version of the Charter.

When stroke survivors are discharged from hospital, they are often left to “get on with it”, with little in the way of meaningful support from the health and social care services. The Charter aims to make stroke survivors and their carers aware of what should be available to them locally. It will be distributed on paper via stroke units and health and social care professionals, and it will be available on-line via the websites of health charities, NHS Health Boards, and other organisations. Very importantly, it will appear in a format professionally designed by speech and language therapists to be accessible to stroke surivivors who suffer from aphasia and other language difficulties. We hope to have an official “celebration” of the document in December in the Scottish Parliament. Throughout this process, we have enjoyed great support from Helen Eadie MSP, who chairs the Cross Party Group. If the CPG endorses the Charter today, there will be a version of it posted on this blog.

If even one survivor or carer feels less alone and better supported as a result of reading and learning from this Charter, it will have achieved its purpose.

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It’s a lottery

ES pictureEarlier this month, the NHS in Scotland published its Stroke Care Audit for 2013. This easily read document can be accessed via the link above and gives an overview of hard data about acute stroke care across Scotland.

The Scottish Government has said that stroke is one of its top health priorities. Yet, as readers of this blog already know, the HEAT target for stroke care was allowed to lapse in March of this year – this target stated that stroke patients should be admitted to a specialist stroke unit within 24 hours: only 5 of the 14 Health Boards in Scotland met this target in 2012. Yes, that’s Five out of Fourteen. The Stroke Care Audit does not break down this disappointing statistic by individual hospitals but none of our largest Health Boards achieved this target. These numbers are not just dry statistics. They matter to anyone who survives a stroke, as early admission to a specialist stroke unit has consistently been shown to improve the outcomes for patients. The report itself admits that where a patient is admitted promptly to a specialist stroke unit, this is likely to mean that the other standards for stroke care will be met for that patient.

What the audit also reveals is that there is huge variation in the standard of stroke care in hospitals across Scotland. For example, Standard 4 in the audit states that at least 80% of stroke patients should have a brain scan on the day of admission to hospital, yet only two of Scotland’s thirty or so hospitals achieved this target in 2012 – in the others the percentage ranged from 77% to only 29%. Again, this dry statistic matters because speed of diagnosis is critical and because a brain scan is essential in determining the kind of stroke a patient has had, and therefore the treatment to be provided.

Looking back over my own experience as a patient in acute stroke care in Oslo in 2004, I conducted my own audit for the treatment I received: the hospital passed the Scottish NHS standards on every count. But that was 2004. In Norway.

What the 2013 Scottish audit tells is a story of huge variations in stroke care standards across the country – for the individual patient this means that the standard of care they receive is a potentially life-threatening lottery. But an audit like this also begs many questions: Why is it that some hospitals and Health Boards can consistently offer a better service than others? Can the worst not learn from the best? What pressure is being applied to hospitals to up their game?

One in six of us living in Scotland will have a stroke. We pay for our health care system through our taxes. We elect our representatives to manage that system effectively. We deserve answers to these questions.

 

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