Friday 28 November 2014

UHL-tr

I found myself admitted to the Leicester Royal Infirmary (LRI) last week.  The LRI is part of the University Hospitals of Leicester NHS Trust (UHL-tr).  I was in pain.  I really was in a lot of pain. I have previously BLOGGED about Pain (see previous PAIN BLOG).  I was in so much pain I wasn't eating and drinking and was becoming really rather dehydrated as a result.


To be in pain is awful.  It is wretched.  It is hateful; excruciating and all-consuming. It is fair to say that it is terribly unpleasant.  It hurts.  It just fucking hurts; it hurts every-fucking-where.  I was in pain and I was dehydrated.  I was dehydrated because I hadn't drunk enough to take my pain medication; I hadn't drunk enough because I was in pain.  It is a vicious circle.  It is a vicious circle that needs to be controlled.  A vicious circle that needs to be stopped, that has to be broken, and for me the best way to achieve this and to break the cycle is the stop the pain.


The MS Trust quote reports that it is suggested that "up to 80% of people with MS experience pain at some stage."  So, after some too-ing and fro-ing and lost notes and juggling of beds and hanging around and taking blood samples they decided that they were keeping me in and I was being sent from the 'Acute Medical Unit' in the Balmoral Building, where I had initially been assessed, to Ward24 in the Windsor Building.  Ward24 is largely but not exclusively a Neurological Medical Ward.  On Ward24 I was treated with both care and respect and dignity and compassion and empathy by the various nurses and healthcare assistants and hospital personnel.


University Hospitals of Leicester NHS Trust promote its value which is to practice 'caring at its best'; and while my visit wasn't faultless and there were a couple of minor issues regarding clear communication and management of patient expectations; the standard of care I received was impeccable, and while I don't like to name names as inevitably you forget someone and have to later go back and include them; it really would be churlish of me not to lavish at least a little praise firstly and fore mostly upon Carol WARD and Liz GALVIN; but also upon Sophia PATEL and Dawn WILLIAMS who all went above and beyond to ensure that my stay was absolutely as comfortable as possible. And I must say Thank You to Ann TOVEY with whom I shared a room and who was very good natured and friendly, who didn't snore and who lent me her shampoo.



NHS England drafted a Vision and Strategy in December 2012.  'Compassion in Practice: Nursing, Midwifery and Care Staff - Our Vision and Strategy'.  This Vision and Strategy recognises that "To be a nurse, a midwife or member of care staff is an extraordinary role."  Which it certainly is.  It also stated that "Our draft vision was underpinned by six fundamental values: care, compassion, competence,communication, courage and commitment."  The Nurses and Auxiliaries and Care Staff on Ward24 demonstrated all six of these fundamental values, and are indeed a credit to Ward24, to LRI, to UHL-tr, and to the NHS.


The staff ensured I was hydrated with water (Liz) and tea (Carol) - a very high priority and very much appreciated.  They explained all the buttons of how to operate the moving bed which kept me entertained for a while (Yes! I am easily amused) and a million little things that they did that made me feel that my care was a priority to them, and that nothing that I asked was too much trouble.  There are others, many others that I should thank, representatives from Occupational Therapy or Physiotherapy (I'm not sure which) who were incredibly helpful, but especially Kareena BASSAN the Physiotherapist who sorted me out a pair of matching crutches, which was marvellous and who spent the time assessing me with them and ensuring that I was able to use them with confidence.


I know people complain about Hospital Food, and complain about the quality of the food provided in hospitals. But I have to say I have always thought that it would be a logistical nightmare of a task to provide good quality nutritious food of a variety that caters for personal dietary needs and particular types of food like Kosha, Halal, Vegetarian, and Vegan to a whole hospital full of people on time.  To provide food that is nutritious, tasty and appetising; food of a suitable variety and choice to meet religious, cultural and/or dietary needs to a huge number of people at a specified time is no mean feat.  And at a cost too as there are strict budgetary considerations.  So, I am really rather reasonably impressed. The food that I had was OK, and I had a choice of fresh fruit.

 
The catering staff were always cheerful and friendly whilst being busy and engaged in the operation of the delivery of food choices, and I especially looked forward to Balvinder Kaur DHADER delivering my juice, tea, toast and a banana each morning for breakfast. Thank You.



In August 2014 new Hospital Food Rules were introduced which highlights the expectation for the hospital to provide a higher standard of food under the new measures announced by the Secretary of State for Health (Jeremy HUNT).  Although the 'Campaign for Better Hospital Food' said that the proposed changes were 'woefully inadequate'. TV Chef James Martin of 'Ready Steady Cook' and 'Saturday Kitchen' fame has embarked upon a mission to transform the standard of the nation's hospital food (Operation Hospital Food) with some positive results. As I said not an easily task to be the food provider, so I am very thankful for what I received.


And then, my tremendous thanks go to the Neurologists and Neurology Team, especially to Dr. Critchley who it is noted looked especially dapper in his Bow-Tie; who conducted his rounds with professionalism, understanding and good humour, which is amazing considering he has the unenviable task of trying to diagnose and find out what is wrong, when MS is widely known as the 'snowflake disease' i.e. no two are the same and it must be like trying to 'understand the understandable' and 'diagnose the un-diagnosable'. Good Job Dr. C.


So, my HUGE thanks to the wonderful staff of UHL-tr (NHS) of the LRI and of Ward24 for caring and looking after me.  Your efforts were very much appreciated.  I do hope that I don't see you again soon, but it is reassuring, incredibly reassuring to know that should I should be required to make a return to the LRI, to know that it is staffed by such lovely caring and hard-working staff who do a tremendous job to ensure that their patients are as comfortable as possible and are well looked after.

Thank You.  You do a great job, and you do make a difference, the world of difference, more than you know.

Wednesday 26 November 2014

THE IMITATION GAME

Alan Mathison Turing:
23 June 1912 - 7 June 1954
Mathematician, logician, cryptanalyst, computer scientist, philosopher and hero
Hut 8
Mr. P.J. Evans wrote a BLOG piece 'The Imitation Game: Fact and Fiction.  And I love what he has to say and in lots of ways feel that I haven't got anything to say, as he has said it all for me.  It really is well worth a read.
The Imitation Game is a film made in 2014 about the World of the 1940s.  This was a very different World.   A World that we can hardly understand today. This was a World without Computers, a world where if a girl was 25 and unmarried there was serious concern. They were 'left on the shelf'.  The Horror.  The Shame.  I am 41 and am unmarried. I am convinced Papa would sell me on eBay if only he knew how to access eBay.  Although I am getting a little worried as he can now text without sticking his tongue  
Keira KNIGHTLY is beautifully cast as Joan CLARKE and her warmth and frank intelligence shines as a woman inhabiting a man's world, and you see why Alan TURING obviously respected her intelligence.   The role of Joan CLARKE is perhaps glorified and exaggerated to make more of a role for Keira KNIGHTLEY.  But, it is a film, it is a story, it is as many people have said a 'film' not a 'documentary'.  It doesn't claim to be the 'real' and 'definitive' story.  It aims to entertain, and it does.  It entertains and it educates.  It is a story based upon facts, and if you want to know the real story, read the books and go to Bletchley Park. Please Please Please visit Bletchley Park.
Dr. Sue BLACK was instrumental in 2008 in setting up a website and starting a campaign to save Bletchley Park, trying to raise public awareness of Bletchley Park and the importance of the role of the people who worked there:
Dr. Black was also instrumental in the campaign to put Alan Turing on the back of the £10 Bank Note, which became a e-petition:
Yes, the film was an oversimplification of events.   In reality more than ten thousand, a reference to people worked at Bletchley Park, more than eight thousand of them were women. The Bombe prototype is fondly referred to as 'Christopher' in the film, a reference to 'Christopher MORCOMB' Turing's School friend at Sherborne, who like Turing excelled at Maths and Science. They were 16 when they met.  Christopher suddenly and tragically died two years later on Valentine's Day 1930 from complications of bovine tuberculosis contracted after drinking infected cow's milk some years previously.  Turing didn't build the Bombe himself at didn't refer to it as Christopher; but this is a story.
This is not only a World where a single girl of 25 is a concern; and cannot become a fellow of Cambridge University because she is female; this is a wicked, judgemental and intolerant World, a World where it was illegal to be Homosexual.  The persecution of Alan TURING for being gay and his subsequent 'Chemical Castration' really is unspeakably shameful.  That a society so lacked understanding is unbelievable and is embarrassing.  That this punishment was in any way considered fair and just is unthinkable.  In a Society today, which is, thankfully more educated, and more tolerant it is just sickening and shaming to look back upon.  Political Changes have thankfully been brought about ensuring that Society is more tolerant and follows more robust principles of equality.
We cannot change the past.  We can only learn from it.  Gordon Brown as Prime Minister may well have apologised and pardoned Alan TURING but I agree with Mr. P.J. EVANS that until everyone so barbarically treated receives an apology the matter is not closed.
I think that an apology is somehow not enough.  Alan TURING did break the law of the land, regardless of the fact that it is shameful that such a law ever existed, and he was punished. But the punishment was unthinkable and inexcusable and marks a very sad period in our history and evolution.  It is Society who should be begging for a pardon from Alan TURING for subjecting him to such a barbaric and heinous punishment. 

A celebration of the life of Alan TURING is certainly not before time.  Benedict CUMBERBATCH is, and I am biased, as I think he is splendid; but he is SPLENDID. Simply Splendid. He really is as Alan TURING was, or as I like to think he was; a little bit different, a little bit clever, a little bit impatient, a little bit at odds with the world around him, an 'odd duck' as his mother used to refer to him so we are told.  Alan TURING was an outsider that didn't fit in and somehow doesn't belong.  Benedict CUMBERBATCH does somehow capture the essence of what I believe, or what I want to believe Alan Turing was like.  Yes, there is something of the cliché about him, about his performance as the 'absent minded Professor' but having worked in Higher Education Institutions and not wishing to be rude, but, there are some qualities that are almost expected intrinsic qualities of academic personalities.  Academics who are completely oblivious to the fact that they are wearing their shirt inside out and, with a childlike-innocence are completely unaware that to other this may be regarded an unusual behaviour.
Personally I adore absurdity; I am drawn to it like a moth to a flame.  Intelligence and absurdity. 

Alan TURING wasn't a superhero but he did, with the help of many other exceptional characters achieve the unachievable and break the unbreakable.  He should be celebrated, my goodness he should be celebrated and I have not even mentioned the work he did to establish Computer Science; and his Mathematical Papers 'Computing Machinery & Intelligence' which considered the question can machines think, he devised the Turing Test, or 'The Imitation Game' from which the film takes its name, all of which slightly confuses me if I am brutally honest.

As the quote that runs throughout the film promotes:
"Sometimes it is the people no one imagines anything of who do the things that no one can imagine."

Friday 21 November 2014

VW BUG

I loved my car.  My VW Beetle.  My Bug.  My Platinum Grey Bug.
I say 'loved', I speak in the past tense, as the other week I was forced to sell her.  I say 'her' as I had named her.  I named her 'Scout'.  I named her after the narrator in 'To Kill A Mockingbird'.  I had to sell her as I hadn't driven her.  I hadn't driven her in the last c. six months due to my poor balance and poor spatial awareness, which are only getting worse.  My poor balance and my poor spatial awareness due to my MS.
The DVLA returned my driving licence the other week, I'd had to send it off to be reviewed (my licence is only issued for a fixed period of three years), and after about three months I had it returned and renewed for another three years.  So technically I am legal and road worthy.  I had a driving test about a year ago at work to enable me to drive the fleet vehicles, and I passed that and they didn't raise any concerns about my ability to drive.  But, so much has happened in a year, and I know in my heart of hearts that although I have my licence that I am at an increased risk of having an accident and this is a risk that I cannot take.
The decision to sell my car, to sell 'Scout' however was not a decision that I took lightly; and was not a decision that I wanted to make at all.  I didn't want to sell her.  I really didn't want to sell her.  It broke my heart; it really honestly, absolutely broke my heart.  To watch someone drive away in Scout, knowing that she was no longer mine and wasn't coming back, was utterly utterly heart-breaking. and Yes, I did I sobbed.  I sobbed for about three days.  I have tears welling now just thinking about it.  It seems so fucking unfair.
But, as much as I loved the car, it isn't so much the car, as the car is an inanimate object, but it is everything that she represented.  My Freedom.  My Independence.  They are gone.  So, now as well as 'mourning' the loss of my health, I am 'mourning' the loss of 'Scout; and am 'mourning' the loss of the Freedom and the loss of my Independence that Scout afforded me.
And we had some adventures.  Blimey did we have some adventures.  Up to Newcastle.  Over to Wales.  Down to Southampton.  Up to Liverpool.  Up and down the Country.  We went to visit a friend in AMAZINGstoke.  We went to Oxford.  We went to Cambridge.  We navigated Milton Keynes.  And even with my TERRIBLE sense of direction and inability to Map Read and No SatNav; we still always managed to navigate our way wherever we were going.  Adventures aplenty.
I did, I loved my car and I hope that she brings as much joy and as much pleasure to her new owner that she bought to me.  She enriched my life immeasurably and I will always look back on happy memories of owning my bug.

Thursday 13 November 2014

LONELY

There is a simply wonderful quote by Paul TILLICH:
"Loneliness expresses the pain of being alone and solitude expresses the glory of being alone."
And that seems to sum it up rather neatly really. I hate the loneliness of being alone. It is hateful. An awful feeling. The longing for company. For affection. For chat. For love. For conversation. For ... For ... Something ... Rather than nothing, rather than the nothingness, the silence of loneliness. When you yearn for someone else to share the nothingness with you. Someone to be there. The physical presence of someone. Or even something. The Cat. The Dog.
But then, yes, the glory, the absolute glory, the absolute joy of solitude. The luxury of time spent alone in your own space, with your own company and your own thoughts. I love, I do absolutely love sitting and organising my thoughts. Perhaps with a cup of tea and a biscuit. How heavenly?
And I have become very adept at hiding my lonely. I can appear happy and cheerful and independent and the least lonely person on the planet. And I'm not lonely. I revel in the glory of solitude and appreciate that I can enjoy that time alone; really enjoy time to think and think and over-think. And to get lost in my thoughts and ideas. But then when I have ordered them and organised them, I want to share them and that is when I feel lonely.
I have got Albion, my cat, and she is marvellous. She listens intently and offers affection, but she never seems particularly interested and never offers an opinion. Never either agrees not disagrees.
And I have some of the most tremendous friends that as girl could ever even hope to have. And I know that they would hate to think that I feel so wretched. They will ask what they can do to help. And that is the thing. There isn't anything that they can do. I know that I am loved, and that is a tremendous help. But I still have that empty feeling of being alone.
They say it is better to be alone than to be with someone and still feel alone. And I am sure that that is absolutely true. I think it was Marilyn Monroe who said, "It's better to be unhappy alone than unhappy with someone."
So perhaps that it the thing. The thing that loneliness relates so closely to unhappiness. Perhaps that empty feeling of feeling lonely is actually unhappiness manifesting itself in another form? 
And loneliness is one hell of an epidemic.  Anne Hathaway said; "Loneliness is my least favorite thing about life. The thing that I'm most worried about is just being alone without anybody to care for or someone who will care for me."
But you are never alone with books and ideas and tea. I can amuse myself for days ... But then I realise that perhaps it would be nice to share it all. Sometimes I do think that. That it would be nice to share ideas and thoughts and dreams ... To share all of that with someone who would like to share. 
I mean even Pooh Bear, the intellect and philosopher, Pooh Bear or was it Piglet who exclaimed that; "it is so much friendlier with two." And I am sure that it is.

And it sounds miserable. And it is ... And yet ... And yet ... It isn't ... It really isn't ..  It isn't at all ... It is marvellous ... Simply marvellous.