The Sprites Journey

 

What follows is a story with 10 chapters and accompanying music that I created during the 50/90 music challenge during July to October 2023. Read the story, and if you want to click the hyperlink underneath each chapter to listen to the music, link should open a separate Dropbox window.

Anoushka

May I introduce you to Anoushka! 

Anoushka is a Sprite, there are many Sprites in the world, but Anoushka and Genevieve were special. They could do things that other Sprites could not, they could do special magic, go to places they were not supposed to be and cause untold mischief. They were naughty Sprites.

Both Sprites have their own musical ‘flavour’, ethereal music that appears from nowhere….and everywhere. There is like a call and answer between them both. 

Track 1 - Anoushka

Genevieve

Presenting Genevieve! 

Whilst Anoushka is outgoing, fanciful and full of mischief, Genevieve has a more dark and mysterious side, sometimes a foreboding exists wherever this Sprite goes. There is more than initially meets the eye with Genevieve.

The Sprites found themselves somewhere they had not been before. The day had started as any normal day, but they went to meet a friend who said he could take them on a bold adventure, and they were intrigued. The Sprites were always up for an adventure and today was no different. Their friend took them to an abandoned warehouse, or at least it seemed abandoned. There was graffiti everywhere, like the Sprites had never seen before, there was a strange smell in the air, kind of sweet, but nice. They were led to a door, it was very incongruous, the walls and floor around were that of an abandoned warehouse, but this door was shiny and new - where did it go. Only one way to find out!

Track 2 - Genevieve

The adventure begins...

Once through the door their friend had led them to the most amazing place. The vegetation was thick and lush and vibrant. There were waterfalls, the Sprites had never been to such a place, it was wondrous and they felt set free. They whizzed around the landscape seeing what they could find, trying to beat one another to the next amazing sight. The creatures were like nothing they had ever seen and they couldn’t help giggling and laughing at what they found. There were strange fruits and unusual smells, Anoushka was braver than Genevieve and tried one of the fruits, it tasted of banana and pineapple and custard! I think the Sprites might not want to go back through the door when the time comes, will the door even still be there?

Track 3 - The Adventure Begins

The Carousel

The Sprites were exploring, getting more confident now, having been in this strange new world a little while, they felt more able to go whichever way they wanted. Anoushka was the bravest though, this Sprite was seeking the fun, and there it was. An old-fashioned fairground carousel in the middle of the forest, except there weren’t horses bobbing up and down, they were giant meerkats! Anoushka laughed at the spectacle, who would have done such a thing. But then Anoushka’s friend explained that in fact the carousel could contain any animal, it was only meerkats because that was what Anoushka desired. This was puzzling Anoushka thought……but then Anoushka remembered, she had magic running through her veins…so Anoushka’s thoughts alone could transform the rides into any animal, giraffes, monkeys, rhinos…..how fun shouted Anoushka, even Genevieve came along for the ride and what a sight it was!

Track 4 - The Carousel

Jet Ski Genevieve

After the carousel experience Genevieve went off alone, although initially quite happy, Genevieve was less pleased to be parted from Anoushka. There was a lake ahead and Genevieve did not like water and did not like the prospect of getting wet, she shouted out. Anoushka returned and assured Genevieve that all would be well and the lake would be easily crossed, but it looked deep and the water was…… orange! Just at that moment Genevieve realised there was a jet-ski at the side of the lake, and in fact it might be easier to take that across (she could fly of course, but that would be boring). What a sight to behold, a majestic Sprite gliding across the orange lake on a jet-ski, "woohoo" she yelled, suddenly Genevieve did not feel quite so nervous…although she did have a bit of a wobble halfway across!! Anoushka was initially jealous, but decided to fly across the lake instead, besides it was a better view from up there.

Track 5 - Jet Ski Genevieve

The Entity

Earlier in the story I mentioned the Sprite's friend who took them on their adventure. In fact the friend is a lot more than that. Sprites often travel in pairs and they have a friend to help guide them, the friends are better known in the Sprite world as 'The Entity'. Each Entity is different and bonds closely with their Sprites. They have never been seen and their form is not known, they just "exist". The Entity is a difficult being to judge, they can be positive and helpful, but equally they have a strangely malevolent tendency. The Entity is leading the Sprites ever deeper into the forest, spectacular and more spectacular sights, but where they going? The pace was relentless and the Sprites were getting tetchy….

Track 6 - The Entity

The Argument

As luck would have it, 5090 is a musical challenge, and these Sprites are very musical beings. Despite all the amazing places they had seen the Sprites were somehow very full of angst, they did not know why. The Sprites had been together so long they could not remember how long, an eternity almost. They were the best of friends for the most part, but even the bestest of friends occasionally fell out and one of those times was approaching. They had been travelling with The Entity for quite a while and they didn’t really know why. It was probably just going to be a fun adventure, but then again, The Entity had not been very clear about the purpose of their journey. Suddenly, the Sprites had stopped mid-journey and in order to clear the air there needed to be an argument. But the Sprites were soulmates, they didn’t argue in the traditional way, it was more like a ‘battle of the bands’ kind of thing. Anoushka would magic up some heavy rock to blast Genevieve away and then Genevieve would break out the orchestra to get her side of the argument across. It was a cacophony of sound and although it is a tense time, it is quite the spectacle to see the Sprites battle it out, the forest was alive with music….there would be no winner or loser, but it would clear the air. The Entity would just sit and watch. Anything could happen, and it frequently did!

Track 7 - The Argument

The Guide

Having cleared the air, Anoushka, Genevieve and The Entity continued their journey. The Entity said they were looking for someone in the forest who would help them on their journey. He described this 'Being' as a kind of Pied Piper, someone who specialised in getting people where they needed to go, even though they didn’t necessarily know where it was they wanted to go. Now, having had their little falling out, the Sprites and The Entity were getting on famously, so started searching high and low for the Pied Piper type being, they were in complete harmony. Then, there, in the distance Anoushka spotted something….and then heard something. Initially The Entity was wary, there are lots of interesting beings lurking in the lush forest, not all of them good. But then sure enough, they realised had found what they were looking for, "The Guide" was with them and singing their wonderful melodies which fitted just perfectly into the majestic sounds of synths and orchestras. Their sweet song seemed to clear a path through the forest, suddenly they could see where the adventure was leading! But where could it be, soon all will be revealed.....

Track 8 - The Guide

The Sprite Reaffirmation

The journey was over! Suddenly things started to become clearer, The Guide had led them to a clearing, a part of the forest they’d never seen before. It was decorated ready for celebrations, brightly coloured ribbons and flower petals leading up to a white stone temple, shining in a light that seemed to come from everywhere. The Entity seemed to resonate happiness at finally arriving at the destination. But what was the celebration, suddenly everyone, even the Sprites, knew what was happening.

In the Sprite world, Sprites are most often found as pairs, Anoushka and Genevieve had been together forever, or at least that is how it seemed. But once in an eon, Sprites had a reaffirmation ceremony, a time to rededicate themselves to one another, a bit like a wedding in human culture. Many friends and different creatures had gathered, how they knew what was happening and when, the Sprites were not sure. They were most excited to realise that all this celebration and fuss, was all for them.

This was it, the reaffirmation was ready. The Sprites would swear various oaths and then they would continue as they had before, except with renewed vigour. Coloured lights filled the sky, magic crackled in the atmosphere and the evening was long and happy. The details of the actual ceremony are strictly secret and for Sprites eyes and ears only. Many tales have been told about what happens, but little truth is known, only The Entity and the Sprites and The Priest share the details. The words that are said, the deeds that are done, must ensure that the Sprite bond remains completely flawless and strong for many millennia to come.

So, this is the end of the story……well not quite!

Track 9 - The Sprite Reaffirmation

The Twist

The following day, Anoushka and Genevieve relaxed and recounted all that had gone on the day before, the journey, the excitement along the way and the surprise of the reaffirmation. But now they must return.

They prepared to make the long journey back to find that door that led them from the abandoned warehouse to the lush and magical forest they were in now. However, The Entity was hesitant….something was wrong.

Suddenly a new story was being told, like they were at a cinema, a projection coming from nowhere to right in front of them, their memory of events were not quite as they had realised.

They did come through a door, they did find themselves in a lush forest, but the other side of that door is not home. In fact they are forest dwellers all along, they had been on a mission for quite some time, undercover Sprites if you will. They had been into the strange cityscape for a long time, sent to learn and understand what the humans were up to. It was a very strange and alien place to them. They tried to help the humans and spread their friendly magic, but they found the humans distrustful and often angry. In fact it was very distressing for a peaceful Sprite, they had blanked out all the stress in an effort to keep going with the mission. They were summoned back through ‘the door’ and back to their calming world for a break. The trauma of living in the human world had taken its toll, but they had forgotten all this..

That is why the reaffirmation ceremony took place, to cleanse them and prepare them for whatever missions came up next. They were both happy and confused - would they return to the humans? Apparently not quite yet, some other Sprites had been sent through the door to continue their good work. Anoushka and Genevieve could relax for a while before their next adventure.

Well what do Sprites do …..I’ll leave that to your imagination, but it does involve magic and mischief. Maybe one day, we'll meet the Sprites again....

Track 10 - The Twist

THE END (for now......).

February 2016 - Three days in January

It took me a year to publish this one, but I got there in the end. Written in Feb 2016, published end of January 2017.

I don't know how this post is going to go, it is going to be difficult I think.

3 days in January, 3 days in which I watched my father in law die. Now that sounds pretty awful and I assure you it was - But there was a positive in it. The number one priority for any family is to try and honour the wishes of their loved one's at a time when they cannot fend for themselves. My father in law, Bob, wanted more than anything else to die a dignified and peaceful death AT HOME. He categorically did not want to go to hospital and die. My wife in particular would have moved heaven and earth to make that happen and she did have to put her foot down at one point, but generally the NHS system allowed Bob his wishes and put things in place to allow it to happen.

Bob had bowel cancer, and has had it for two and half years. He was given around 9 months when he was first diagnosed, and he did not want any treatment. He was adamant from the outset that he did not want treatment, he felt "it was his time". He was 88 years old when he died, so in his 85th year when diagnosed. The consultant did not understand Bob's wishes, he said his operations were successful 85% of the time. Bob's initial decision was quite hard to take, to choose for a disease to take him that could be treated. He was not so sure though, that the treatment would make him well again, and of course there were risks involved. 

Actually having someone that was so absolutely sure how he wanted his life to go, did make it easier for us though. Bob had a "do not resuscitate" form filled out, his will was in order, he had made his wishes over wanting to be at home very clear, that he didn't want treatment very clear. Although all of those are quite hard to take as a family member, but it leaves you in no doubt about what you should do. 

For the majority of the time he had the cancer Bob maintained a remarkably 'normal' life, he continued looking after himself and his home and garden, he continued driving. He absolutely refused to be beaten by the cancer, I've never known a mentally stronger man, a man who at the age of 85+ could easily have surrendered. But Bob was made of stronger stuff.

He eventually went on to a 'low fibre' diet. Because the cancer had begun to restrict his bowel, he needed the food to be less bulky, so he went on a specific diet that avoided food high in fibre. He became expert at reading food labels to avoid what would be bad for him. He spent a lot of time at this and it served him well. He went well beyond the 9 months the consultant gave him and in fact his GP suggested that even if he had the surgery then living two and a half years more would have been considered very good. This made Bob happy and felt his decision was warranted. But he did start to have a few funny episodes in the last couple of months, he recovered from them but they were indications that things were moving into a new phase.

Deb so wanted to have one last Christmas with him and in 2015 that is exactly what we got. We never really expected him to still be around, and I shall cherish this last Christmas day very much. I know Deb will too.

Then the story gets to its sad conclusion. Deb had been around to see Bob on Monday 25th January and Bob had recounted his tales of the weekend, spent cleaning and tidying as he normally did, on that Monday he had been cleaning windows! But he said he felt whacked and was in a bit of pain, so would take some painkillers and retire to bed early. Nothing seemingly out of the ordinary.

Now, bearing in mind Bob's fierce independence, he never asked for help, he never asked for anything. So at 04:30 on Tuesday morning when he rang and asked for us to come around, clearly things weren't good. We rushed around there and he was in a great deal of pain. We gave him some stronger painkillers, but they made no difference. So we called an ambulance, which did not please Bob one bit.....but the 111 service said don't worry, you don't have to go in the ambulance, but at least get checked out. Not surprisingly the two lovely ambulance ladies said they really wanted to take him to hospital, but he made his wishes abundantly clear. So instead they called his GP, who came around and prescribed morphine. Deb had a quiet word with him and he said he thought it was Bob's liver that was the issue, he could feel secondary cancers when he examined him.

After slowly increasing the liquid morphine, and this not really helping, the GP prescribed a morphine "syringe driver". This is a machine that delivers a steady dose of morphine. We knew this was a bad sign, as these machines seem only to arrive at the end of someone's life. There we were trying to plan for how we were going to get Bob looked after, and this was quite a blow. He was put on the syringe driver on Thursday afternoon, and he died at 5am on Friday 29th January. From start to finish it took only 3 short days for cancer to rear its ugly head and take Bob's life.

I spent a fair while with Bob in those last 3 days, Deb spent nearly every hour with him and got virtually no sleep for 3 days. The first day Bob was in bed, he was very chatty and we spoke for hours, I'll keep and treasure those memories forever. On the Wednesday he was desperate for a shower, so I helped him with that.....he put so much effort into that shower....thinking back it was like he knew it would be his last one. He wanted to be clean one last time and I was honoured to be the one who helped him with that task. It was the last time he was out of bed.

I refer to Bob in this piece as my "father in law". He only ever wanted to be called "Bob" rather than dad.....but in every way he behaved towards me as a dad, and I thought of him as a dad. He taught me so much, a debt I can't ever repay....but then he wouldn't expect me to, he gave so much and only really expected one thing in return....that I love and look after his daughter. Well he's got no fears on that one!

The funeral was yesterday, Tuesday 9th February. It was hard going. Deb and I had both written some words which we delivered at his service, Deb a eulogy and me a poem. I think we did him justice, I was really proud of Deb in particular....to stand up and speak in public is one thing but to do it at your dad's funeral is quite another. She stood there for 3 minutes or so and delivered what she had written, it made the service really special. I remember doing a poem at his wifes (Chris) funeral, I got through that one ok and I'll never forget Bob's reaction. As I returned to my seat, he stood up and looked me square in the eye and shook my hand. He's never really shaken my hand before, but that handshake was so firm and his gaze so direct, and he nodded his head ever so slightly. That was Bob giving his gratitude in a way I'd never experienced, again, I'll never forget it.

One of the the neighbours said to us after the service "don't take this the wrong way, but that is the nicest funeral we've ever been to". I shall remember that, because that is exactly what I would have hoped for.

I worry a bit about Deb though. She has been so strong thus far and has launched herself into the organising of things and not given herself time to crash. Maybe she will or maybe she won't 'crash', we'll see. I will be there if she does and equally I know she'll be there if I do.

All in all, it has been a pretty tough couple of weeks and I can't really believe or take in what has happened. One thing is for sure, if I handle myself towards the end of my life in the same way Bob did, then I won't have done a bad job. There aren't many braver, tougher men out there than Bob Jarvis. I salute you.

Footnote.....
A word also for the NHS workers. We saw a district nurse and an overnight carer who attended for Bob's final night. These people you only see fleeting glimpses of in your life, the overnight carer was wonderful. Her whole job was palliative care, she only really cared for the dying and she did it well, so very well. She introduced herself and immediately put you at ease, at a time when you didn't know whether you were coming or going. The district nurse gave the care she needed to give and reassured. These people probably both knew the end was nigh for Bob, but nevertheless gave that reassurance, they became that rock for us to lean on....safe in the knowledge that although we didn't know what was going on, that someone else did. I can't imagine doing a job like that, but I am eternally grateful that there are those that do want to do that job.

April 2016 - Progress, is that too much to ask?

I've written and re-written this blog many times - the most recent rewrite was last night and I guess I'll click the publish button now.

Whenever a story sticks in the media for a long time, you do tend to get fed up with it. Tube drivers striking, phone hacking, doctors striking. Yes, it is true, however much you may agree with a certain subject that is in conflict you do eventually get fed up of reading about it and shout "for goodness sake get it fixed" at the screen/newspaper.

Now don't get me wrong, in the current argument between the government and the NHS/BMA, who are you going to believe? The government haven't done a good job with this dispute but equally it takes two to tango....or in this case two to badly fall out of step with each other. There is of course the 'joe public' or patient view as well and whilst that shouldn't be forgotten, I would happily accuse the government of forgetting this viewpoint and getting lost in the politics, but I've no doubt doctors have patient concerns at their very core. Why else would they do the job. But more strikes is not the answer.

The problem is that because the junior doctors have had such a struggle getting a fair and safe contract, the rest of the NHS is bound to be looking on wondering whether they will be next. So I'm tending to see this as a 'whole NHS' problem rather than just a junior doctor problem....not to belittle the problem that exists, but it has exposed just how much the whole system is struggling, seemingly due to underfunding, a lack of joined up working and a lack of solid leadership.

So what do I want to see? Well, we've had the strikes - I want to see doctors (junior doctors, consultants etc.) being able to put all their efforts into patient care and making the NHS a better and safer place, I want to see an end to them having to put so much effort into fighting the system. It must be bloody exhausting. Seriously would you dedicate chunks of your time to sit outside the department of health 24 hours a day to make a point? In your own time, on your day off, would you??? If that doesn't show commitment to a cause I don't know what does.

I want to see, clearly laid out, exactly where the differences lie between the two sides. Whereabouts with this new contract the two sides agree (there must be some points of agreement, mustn't there?), what the government cannot agree to, what the BMA can't agree to. Are we talking about 1 point, or 100 points.

I want to see the two sides talking. Whether this is face to face or whether it is via ACAS again, either way I want to see progress. The two sides cannot just remain entrenched in their views, or else no progress will be made and I (as a member of the public) will forget why this dispute even began. Yes I know the answer from junior doctors will be "because the new contract is unfair and unsafe", yes I know that and I don't doubt it. But whilst I still support you in your fight, in order for me to get back into this I need a reminder, a pointer to help me understand exactly how far apart you are.

So once the list of agreement and disagreement is drawn up, and if both sides still feel they can't move forward - then it might be time to choose some different people to do the negotiating, a fresh view. The best people to understand what needs to be done are of course the people that work in the NHS, the doctors. But you can be too close to a problem as well to not always be able to see the way forward clearly.

Finally, the trial of the new contract that has been suggested. You could go on arguing for the next 6 months, or you could quickly set up a trial. Why on earth wouldn't you do this? If both sides are so sure they are right, this is the ideal way to test the ground. Then once the trial is underway, you have some real evidence, some hard data, to back up your argument ("your argument", which ever side that ends up being). Good, hard, data - who doesn't love that? Just trial it, don't argue any more, make some real progress.

So what is my summary here?

• I support the junior doctors in their fight. I love and value the NHS.

• I don't want to keep seeing the rage and fury in the news and the constant disagreements

• I want to see progress!

Is that too much to ask?

January 2016 - The moon on a stick

I've been thinking about the NHS again, it is hard not to right now what with it being in the news virtually every day. So right at the start I will set my stall out, I still believe that an independent cross party commission is needed to properly sort out the future of the NHS. I said at the start of my NHS blogging that I didn't believe politics alone could sort out the NHS, and recent events have certainly proved that.

What I've also been thinking about is what I want as a patient and what I've got a right to expect. For that I have an analogy.

At my place of work I am, amongst other things, a product manager. As the product manager I have to make a lot of decisions about my product (a piece of software as it happens) and I'll use a couple of areas to try and make my point. My product has customers, and in order for my product to be successful I have to sell my product to both my existing customers and hopefully some brand new ones too. So I have to understand exactly what the want from 'an ideal product' and try and make my product fit that bill as best I can. However, if I ask my customers what they want and they say "I'd like the moon on a stick" please I have some decisions to make. Primarily:

• Can I afford to provide my customers with "the moon on a stick"?
• Am I best placed to be the provider who gives those customers "the moon on a stick"?

Just to flesh that out a bit, the provision of such an enhanced service may cost me a lot of money to provide, maybe it might cost me more to provide than I make in revenue from the product. Also it could be that actually I may not see my product as being a "moon on a stick" kind of product.....it may better fit a different market. So it is with the NHS.

Now. As a patient I may well want "the moon on a stick" but that doesn't mean that the NHS has to provide it, or indeed that doesn't mean the NHS can in any way afford to provide it. The area's I am thinking about are in particular a "7 day NHS" (in a hospital) and being able to see my GP 7 days a week. Don't worry doctors reading this....I'll go onto qualify "7 day NHS"!! In fact I don't remember the government or the NHS asking me what I want at all, because in fact I really don't want to be able to make an appointment with my regular doctor on a Saturday or Sunday (or bank holiday). I am lucky in that my work entails Monday to Friday working and the weekends are my own. But I am also lucky to be in a position to be able to squeeze doctors appointments into my working week because my employer is flexible enough to allow me. I know not everyone will have this view, and maybe for some people a weekend appointment with their GP would be preferable. Whilst I don't want to be ill and ideally don't want to see my doctor, I see this as a 'normal' weekday event, I don't want to be heading down the surgery at the weekend thank you very much. If I am unusually unwell at a weekend, then I can head to my local pharmacy, phone 111 or god forbid I am THAT unwell off to my local A&E.

This part of my analogy may not be a very comfortable read, but it comes into the "am I best placed to provide this service", in particular with reference to it being the 'same' as a weekday appointment. What if the government/NHS decide they are going to provide this 7 day GP service, but what if it wasn't free? Yes, you can see your GP on a Saturday, but it will cost you £10/£20/£30.....there has to be a consequence of providing a service, giving the service absolutely costs money, and we all pay for the NHS through NI contributions....but what if the payment was more in your face? It is one of the reasons that a cross party commission needs to look into EVERY eventuality and what a suitable answer might be. It might not be a wholly palatable answer, but making these kind of decisions helps patients realise that there is a cost and consequence to the NHS providing a service - it may be free at the point of need, but it certainly isn't "free".

Just quickly about that 7 day NHS in a hospital. On June 22nd 2013 as it says in THIS blog I got admitted to hospital. June 22nd was a Saturday. I had problems brewing all week and I was on a collision course with a weekend admission....it was just one of those things. I had become progressively more ill that my wife ended up phoning up the NHS 111 out of hours service in the early hours of Saturday morning. After speaking to a doctor he knew I was sufficiently unwell to need A&E, he booked me into a bed at the MAU and my wife drove me to hospital. I was having an Addisonian Crisis (Adrenal Insufficiency), it is a life threatening condition and I was hooked up to all sorts of IV drugs in the MAU and a week later I was released in a lot better shape that I started. I was in hospital all weekend, guess what, it was full of nurses and doctors and consultants. If you have an urgent medical condition that means you have to be admitted to hospital, you are going to get seen 24/7 - every single day or night of the year, without fail. So yes of course there is a 7 day NHS already.

But in a different scenario, I refer to when my Dad got admitted to hospital, not on a weekend but on a bank holiday - Boxing Day 2014 it was. Again, an emergency ward full of staff to sort dad out who had a double-stroke....although we didn't know that initially. He spent 3 months in hospital and he was well looked after....the problems he faced were two fold....not enough Physiotherapists and none at the weekend and too much time taken for social services to help us find dad a care home, because again they don't work weekends. 

It is this element of care that REALLY DOES need to be 7 day. Because we both work, most of the care homes we visited were at the weekend. So when did we most need to speak to social services to ask questions and give feedback as to the suitability of the homes?....the weekend. Dad's stay in hospital was undoubtedly extended by a week or two because of this, it doesn't sound much, but I know well enough how valuable a hospital bed is.

So on weekend emergency care, the NHS delivered for me and it does for everyone. Do I think that I would have liked to have had my pituitary surgery scheduled for a weekend? (the true 7 day NHS the government is on about) I'm not sure, it was urgent but urgent enough it couldn't wait a couple of days? Actually the operation was originally scheduled for a bank holiday, but although my operation got rescheduled to the Tuesday after the B/H Monday, the reason it got rescheduled is because several other urgent patients had to get operated on by the Neurosurgeon....because guess what, the highly paid surgeon works on bank holidays, who'd of thought! So the government have to think is providing me the patient with my surgery on a Saturday or Sunday, is that "moon on a stick" territory or not. Do I want it and can they afford to provide it and is that a service they even want to provide if they could afford it. Evidence that I've seen suggests that they can't afford it, or even staff it right now.

Incidentally something else that occurred to me recently, MRI scans. I've had 4 of them and every single one of them has been at a weekend, 3 in Portsmouth and one in Southampton. Clearly the department wasn't fully staffed, but it was staffed enough to still photocopy a good many humans in great detail. More evidence of 7 day NHS working.

As for GP appointments on a Saturday/Sunday, I don't want them....I honestly don't. Does the general public, probably some do, but I don't know the answer to that one either. Is there enough GP's to provide the service and can the government/NHS afford to provide that service. Again evidence would seem to suggest not.

The government cannot just go around wanting to provide "moon on a stick" level service if it can't back it up with the staffing and the money and some kind of evidence its customers want or need that service. Yes in some areas 7 day services are needed.

I hope I'm making sense here.....it made sense in my head before I typed it out.

Let's get this cross party commission off the ground now. There seems to be some support building for it, so let's hope someone can make it happen.

November 2015 - Are things that bad in the NHS?

So as I sit here typing this, I'm wondering exactly which direction this blog will go. I wanted to try and get over how all the NHS news stories look from a patient point of view. The thing is I didn't want this blog post to concentrate on just one area, but in a way that is the whole point. If you listen or watch the news or read the newspapers it will be impossible to miss the stories that are constantly hitting the headlines. When an area gets such constant coverage then you truly know something isn't right.

So I wanted to try and highlight what I mean....

Doctors dispute

Stories like this one:
http://www.theguardian.com/society/2015/nov/22/patients-could-die-junior-doctors-strike-jeremy-hunt

I've come to quite dislike the term "junior" doctors, because it really does do them a disservice. Every organisation has its own way of referring to its staff, but someone who has been doing a job for 10 years is hardly "junior" - but still enough of that.

So the first thing to go into my 'evidence pot' is that the doctors and the government have fallen out big time - this is not good news for people like me, patients. As a patient what I really need is some kind of comfort that the people who will look after me in my time of need will be in a fit state to do so.

NHS - the 7 day service
This area I find particularly annoying. The government say they want a "7 day service", like there isn't one already. I've been in a hospital ward twice during a weekend and there were plently of people on duty to look after me. But I know what the government are getting at, whilst there were doctors and nurses and ancillary staff on duty to look after me, other areas were not, such as physio's, social care, etc. But this is where the story gets muddied

http://www.bbc.co.uk/news/health-34150672

The message around what the government actually wants is not clear enough and this has caused patient concern that doctors don't work at the weekend and they won't be cared for if they get ill. This is simply not the case, and the government implying that doctors don't work 7 days is an ill thought out strategy - also part of the cause of the general falling out between the two sides. 

Get the message clearer in this area - what the government wants is a full 7 day service, of not just critical care, but all the ancillary services - to be able to book surgery on a Sunday, pop in for an xray or blood test on a weekend etc. 

Then comes another area where the experts and government fall out. How will you staff this extra service, when recruitment and retention is already an issue. Throw billions of pounds of public money at a 7 day service by all means, but have some kind of idea how you're going to staff it and also whether that is actually the best way to spend the public money in the first place.

As a patient, has anyone ever asked ME whether I want a 7 day service, and if I did, exactly what would I want from this 7 day service. Right now, I would settle for assurances that the existing services are in safe hands, which seems far from guaranteed....

NHS - "Winter pressures"
As a patient, this is the front line, this is where it really matters. Winter pressures have been in the news every year for the last few years. Inevitably more people get ill during the winter, and this puts pressure on key parts of the NHS. The GP surgeries and in particularly the A&E departments, like this story:

http://www.bbc.co.uk/news/health-34790100 

This story links to a wider issue of NHS funding....

NHS funding
This is another area where NHS experts and the government seem to disagree. The government has promised an extra £9billion to the NHS based on this weighty report, the "Five year forward view"

https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf

Although as I have already seen pointed out on social media, this 5 year view, is already one year old, and now represents only 4 years. But still, if the experts are to be believed, this £9billion is in fact not nearly enough. It isn't enough to keep the existing NHS going, let along investing in a better NHS and it certainly isn't enough to fund a full 7 day service, this was never even included in the 'forward view'.

Which leads me to this report

http://qmr.kingsfund.org.uk/2015/17/

The above doesn't paint a very rosy picture. There have been widespread reports in the news about underfunded NHS trusts and the prospects of these trusts running out of money during the next year or so. For us patients that isn't something we want to hear.

As well as being a patient, I'm also a tax payer. I want to know and deserve to know whether my money is being spent wisely. It is a huge topic.

...and more
Loads of NHS scare stories just on one page
http://www.independent.co.uk/topic/NHS

• Crisis in residential care
• Whistleblowers
• Record number of patients in hospital too long (cue the horrible term "bed blocking")
• Drugs are too expensive
• the NHS will be privatised
• War of words between 'sides'

As a patient, that little lot can't be good news, can it?

So what does this all mean for patients?
I've pulled a random selection of news stories into the above few paragraphs. You could pull in 100 more - they all tell a worrying story for a patient or potential patient.

• Will I be able to attend my appointment when doctors go on strike?
• If I get to hospital will there be anyone there to care for me?
• Will my doctor be too tired and stressed to care for me properly?
• Will there even be a hospital there when I get ill!

The list could go on....

It's a worry, that's what it is. There seem to be no end of opinions, no-one on the various 'sides' seem to agree with one another. It seems fairly certain that money is very tight and that there are a huge amount of problems to solve. Lots of people with all different views need to sit down and talk to one another, not argue about how the other side is wrong.

Of course being a patient advisor for the NHS Survival campaign means I am bound to be angling at a certain thing. A cross party commission to properly discuss the future of the NHS and set out some clear options on how we are going to keep this wonderful service afloat.

Perhaps it hasn't been clear up until now exactly why this has been important, perhaps up until now you might think there isn't much to worry about, or that things aren't really that bad. But fire up your news service of choice and most days you are going to see an NHS story, and most of them don't make very pleasant reading.

The time is now to start those conversations, or else patient harm is going to happen. None of the sides want that, or course they don't. But some backing down needs to happen, some acceptance that all sides have a general aim and that the only way to align these into a sensible way forward is to get an agreement on what the way forward is.

Please, let's do that soon

September 2015 - I'm a worried patient!

Dear everyone

I was inspired to write this blog entry by this letter written by Zoe Norris, read it if you haven't already!

http://www.huffingtonpost.co.uk/dr-zoe-norris/nhs-junior-doctors_b_8208728.html

I read it twice and it almost made me cry and yes I'm a 54 year old bloke.....to clarify:

a) cry actual tears
b) cry out in anger/frustration/fear/anxiety

I have blogged before about how I believe the only thing that will save the NHS, is the NHS. The management, the consultants, the doctors, the nurses, the healthcare workers....everyone. I don't believe a political party can solve the issue, although clearly we are talking about public money, so politics has to be involved somewhere. 

I think it is fair to say that politics certainly isn't helping the current situation.

One of the things the NHS has to do is inspire the next generation of medical staff to come and work for the NHS. Seeing what an incredible vocation healthcare workers sign up for is what will make new people come along and want to do the same. But right now, there are doctors on the street protesting, 'signing up' to go abroad and feeling downright fed up. That means morale is very low and the last thing medical staff are wanting to do is say "yeah, this is such a brilliant job, you should do it too". The letter from Zoe above, just proves that point.

Whilst a lot of members of the public may not care much about that, I don't know, they really would care about patient safety. I don't know what it used to be like to work in a GP surgery or hospital (y'know, back in the good old days) but I do know that if in the present the staff morale really is as low as people are saying it is, and staff really are under as much pressure as they say they are, then patients will suffer. Not intentionally of course, just because you can only stretch goodwill and resource so far.

There has to be some good NHS news coming soon, doesn't there? Is there any chance of new ways of working that will benefit patients, is there investment that will benefit patients, is there a way people can start to work together to solve the crisis in the NHS little bit by little bit....and benefit patients? All the arguments in the media and on social media right now are no doubt justified, but they detract from what everyone should really be doing. Fixing the NHS before it becomes unfixable.

So why can't all sides just negotiate, move on, and solve the bigger issue - I don't really buy the "because they want to privatise the NHS" argument because then the government moves from 'just' falling out with consultants/doctors/nurses to falling out with the whole country! But then as you may have guessed, I'm not very good with politics.

So, in summary, I'm a worried patient - I really don't like what I'm seeing. So what am I getting at.....well if you've followed my blogs or me on social media then you can guess what's coming next.

A Royal Commission is what's needed. With so many sides lining up against one another, an impartial wide-ranging view is necessary, urgently necessary. Please, please make it happen soon.

Yours sincerely

Carl, the worried patient

September 2015 - Bed blocking and 7 day NHS service

I heard that old phrase dragged up again on Twitter, "bed blocking", a phrase that always annoys me. It always comes across as something someone would do on purpose when in fact hospital is the last place any patient would choose to be if they could avoid it. This train of thought also dovetailed in with some thinking I'd been doing about the proposed 7 day NHS service that the government says it is going to make happen - at the same time many experts in the industry and many clinicians are saying that a full day service (over and above what already happens 7 days now) would mean massive extra investment or even having to stop certain things that are being done now to make that full 7 day service happen. 

So as a patient what's my view on this, what has my experience been? Actually it is as a family member of a patient I've realised my main experience lies, when my dad was in hospital earlier this year. He had already been in hospital a couple of times in recent years, he has Parkinsonism & Dementia but was living at home on his own with a care package in place which was working well. That is until Boxing Day 2014 when he had a double-stroke. He then spent 3 months in hospital recovering and he did indeed reach the stage where he was well enough to leave hospital but arrangements were not in place so that he could. The media would of course call this bed blocking, and I'd begin to turn the air blue!

This leads on to the other thing that I've heard a lot of recently, about certain things not being available at the weekends. One thing my dad desperately needed was physiotherapy, he did get some whilst on the stroke rehabilitation ward at the QA Hospital in Portsmouth. But he only got sessions on weekdays, if he had any at the weekend they were very few and far between. He could have also done with community physio service once discharged, but the team told me this would be very unlikely because they were so stretched and only went out to the highest need patients. We did see the same doctor frequently to catch up on exactly how my dad was progressing and we did see that doctor at the weekend sometimes (there was always a doctor around at the weekend). Seeing the same nursing staff frequently didn't seem to be an issue, they seemed to always be there!

When it came to discharge planning, it became clear that my dad could not go back home and would have to be discharged to a care home. The family meeting we went to (very well organised with nursing staff, physio's and social services) said in no uncertain terms that dad could not be discharged back home. So social services gave us a big pack of information on homes available in our area and which ones had vacancies. But the process of us going out to visit these homes, places being available and then those homes coming into hospital to assess dad to check they could provide the care he needed took time and planning. Unfortunately the advice given by the discharge team that dad needed a "care home" proved incorrect, because dads mobility was so variable on his good days he was a "care home" but on his bad days he was a "nursing home". So having gone through the process of finding a care home, we had to start again and find a nursing home. This all took time and although the team we dealt with on the ward did make it clear he was well enough to go home, they never once used the term "bed blocking", in fact quite the opposite - they said they would not expect dad to leave hospital until arrangements were in place that we were all happy with. The pressure they were under was evident, they didn't have to say the words, but I knew they wanted dads bed....it was a kind of unspoken understanding.

The other service that was not 7 days was the social services element, a couple of times we visited a home at a weekend, and we could have done with speaking to social services, but had to wait until Monday. Of all the services we dealt with during my dads time in hospital, this surely should be a 7 day service, I know the person we dealt with visited her patients regularly, spoke to care homes, reviewed cases etc. The whole process would surely benefit from more cover.

What this means of course is that for me as a family member, with no experience of how everything worked, the system is very difficult to navigate and very time consuming. The thing to bear in mind is that the NHS is an inherently compassionate system. If it wasn't then when they needed the bed they would have discharged dad to my care whether I could cope or not....but I don't believe they would ever do that. So with that compassion in the forefront of how the NHS works, it means if they wait until everything is in place before they discharge then there will be periods when that patient is in hospital longer than medically necessary. But what system would you rather have? Of course it would help to have more physio's (both at the weekends and for post hospital care), to have social services available 7 days a week to have more care homes available with more spaces. But where does all this extra money come from (well, not the care home bit because a lot of them are privately run), I'm only looking at a tiny fraction of the spectrum of a wider 7 day service the government are talking about. 

The NHS annual budget is what, £115billion? So even if you said a 7 day service would cost another 15% on top, that is £17billion every year. I've no idea, that figure is completely made up, but even small percentages of such a massive figure is soon going to add up. So now it makes more sense why experts get worried by how much these plans could cost. That is even assuming you can find all these additional speciality people you'd need to recruit and train (this element frequently questioned by those in the NHS).

• So, would my dad have benefited from certain things being a full 7 days, yes. 
• Under the circumstances, despite him being in hospital longer than he needed to be, was he treated with compassion, yes. 
• If everything was in place for a full 7 days, would dad have spent less time in hospital, probably. 
• To literally just extend the things it does now over 5 days to a full 7 days, can the NHS afford that, no I don't see how. (not without increasing National Insurance contributions)

Of course efficiencies could be made, things could be stopped to help pay for it.....but how you work out what that is going to be? We need a Royal Commission to work that out, we really do.