Starfish The Movie

Just been watching BBC Breakfast this morning and they featured the Ray family and their biopic Starfish The Movie.

I knew very little about this family and why should I: We all try to have some privacy especially in times of crisis, but these folks have bravely turned their story into a film. In a nutshell, Tom went to bed one evening with what he though was flu symptoms. He woke months later to discover he'd had arms, legs and part of his face amputated. Cause? Sepsis. The story is (and please correct me on any of this as I have yet to see the film) also about the effect on the family and how they pulled it together. Fuck me, this is one hell of a brave bunch. Tom's wife was 9 months pregnant when he went in hospital, they also had a young daughter and they were self employed. I thought I had it bad but this is off the scale..... I have so many questions for them!

I watched a couple of short clips during the interview and I was almost in tears. How I'll cope with the film will be interesting! I'm not watching the trailer, I'll wait for the film. For those of you who want to see a clip, here is the trailer...

 

Here's an article about the family.... so much sounds familiar. I'll never forget my wife being asked if I was the same person she had married and her answer was "no".... that's hard. Hard on her and hard for me to hear and comprehend. How the kids cope, I have no idea.

Anyway, this film needs supporting so please go see it. I'll add a piece at the end of this once I've seen it.

More info available at their website www.starfish.film

Sound Familiar?

I've not posted for AGES but just been talking to wifey who was telling me about another death at Lincoln County Hospital.... death by sepsis due to gallbladder complications.

Having a quick Google I found yet ANOTHER story...

From Stamford Mercury....link

Criticism of communication between Grantham and Lincoln hospitals during inquest into death

An inquest into the death of a man from Corby Glen raised concerns over communication between Lincolnshire hospitals, as an urgent procedure was cancelled when the patient received two appointments on the same date.

On March 22, Robert Hall, of Pridmore Road, died at Lincoln County Hospital from septicaemia, as a consequence of cholangitis caused by gallstones in the common bile duct. Also identified as a contributing factor was a perforated duodenal diverticulum – the first part of the small intestine.

A procedure to remove the gallstones, known as an endoscopic retrograde cholangiopancreatography, or ERCP, was attempted three days before Mr Hall’s death, but had originally been scheduled at Lincoln for three weeks earlier, only to be cancelled because he was due to see his treating consultant at Grantham on the same day.

Coroner Paul Smith said: “It does seem there was something of a hiatus in the communication between the various hospital departments and Mr Hall’s family, which led to two letters being sent to them only a couple of days apart with competing and clashing requirements to attend either Lincoln or Grantham Hospital on February 26.”

Giving evidence during the inquest, Mr Hall’s daughter Stephanie Tuohy said: “I rang Lincoln County Hospital on February 16 to explain that we didn’t know what the procedure was and that we hadn’t seen the consultant to explain anything. They readily cancelled the appointment even though it was supposedly marked as urgent.”

She then accompanied her 81-year-old father to his Grantham Hospital appointment, only to be told he should have had the ERCP. “He asked if he’d had the procedure and we said no. He asked why and he was absolutely horrified.

“He was actually quite rude,” she told the coroner. “It concluded with him saying that we were wasting his time and we were not to go back to see him until we’d been to Lincoln for the ERCP.”

It was not the only delay experienced by Mr Hall and his family. An incomplete form had already put back the initial MRI scan identifying the presence of gall stones, and when this led to the decision on January 29 to do an ERCP, a letter stating this was received by Mr Hall’s GP but not by the patient. The first time Mr Hall heard about it was when he received the competing appointments for February 26.
The next day, Mr Hall was admitted to Lincoln County Hospital with severe abdominal pain, and the perforated duodenal diverticulum was identifed and operated on with success.
He returned home, only to be readmitted for on March 13 when it was identified that the gall stone problems predominated.
By the time the ERCP was undertaken on March 19, one gallstone was too large to be removed. The plan was to try again once Mr Hall’s body had recovered, but he deteriorated rapidly and died on March 22.
Returning a short narrative conclusion, coroner Smith said: “Robert Hall died from septicaemia, that being a recognised complication of an ERCP procedure attempted on March 19, 2015 to remove a gall stone from the common bile duct.
“At the time the procedure was undertaken Mr Hall was recovering from a successful procedure to repair a perforated duodenal diverticulum undertaken on February 27, 2015.
“It is not possible to say on balance of probabilities whether the outcome would have been different had the ERCP been performed prior to that operation.”

What's frightening about that, is colangitis....which is what I had earlier this year AND because doctors are too stupid to realise the symptoms or that this is happening- because when it happens, it happens fast- I'm now apparently more susceptible to this condition and so I now carry a scanned letter on my phone from my consultant explaining to any fuckwit medical person that I'm not being over dramatic and to take my condition seriously. Mental isn't it.
Like any medical condition, you begin looking and you find things you wish you hadn't!... classic example!

Here we go again...but WORSE! What they don't tell you about Cholangitis

Friday 22 April. Half day shoot at Siemens. After I packed up and got in the car it was as if someone flicked a switch on me. I felt dreadful. I got home and collapsed onto the sofa and fell asleep. Before I knew it, Helen was home from work and I was spiking a temperature. This is not good. Surely it's not the flu returned!?

By the evening I was breaking out in shivers (rigours) followed by hot sweats!

Sunday, I'd had enough. I went to the out of hours doctor who, to be fair, wanted to admit me but allowed me home with some strong antibiotics and if I got worse, was to return to A&E. He had suggested it was either a UTI or to do with my bile duct. Oh and book and appt for Thursday with your GP. Ok, no problem.

I expected to feel somewhat better by Wednesday- which I didn't- so on Thursday at the GPs he sent me to A&E for a blood test. After a 6 hour wait, I was admitted to MEAU and transferred to Dixon Ward with what turned out to be Cholangitis. Fuck.

This basically means I have an infection in my bile duct. The blood test showed markers for this plus damage to my liver. This apparently is serious and can be fatal if not treated! A big bag of IV fluid is put into me followed by 2 IV antibiotics and another large bag of saline to get me stable.

More IV antibiotics over night and the following day and by the evening of day 2 my cannula is removed and I'm now on oral antibiotics.

I also go for an ultrasound scan to see if there's anything unusual. The scan results were clear. Yayyy can I go please! 😂

Dr Spencer is in charge of me. Decent bloke. Looks like Harold Bishop out of Neighbors. Seems to know his stuff and has a good bedside manner. He's checked the ultrasound and now-to be safe- wants me to go for an MRCP scan. This is an MRI scan on my bile duct. The idea is to check for 'grit' in there. Because of my previous ops in this area, it is likely that my bile duct is scarred. He needs to check because if there is 'grit' in there, it will have to be removed because infection will return quickly if it isn't remove. How to remove it? ERCP. Oh shit!!!

So, what to do? Prey there's no 'grit' and it's a simple cure. If it's not, I think I shall have to ask to be transferred to the QMC's hepto biliary unit. I'm a bit of a special case with this, so it needs doing by the right people.

As for now, I'm stuck in hospital over the bank holiday simply waiting for the scan. Could be Monday, expect it to be Tuesday. We'll see. Hospital over a weekend is not a good place to be. Boring doesn't come close! 

I can wonder about (accompanied) but it's just wondering through corridors. Talk about fed up with nowt going on!

Well I'm now a week on and out of hospital. I had my MRCP on bank holiday Monday and [eventually] got the results on the Tuesday. Bloods were also done on Tuesday to check if my liver was ok. What a palaver - no results from the MRCP in the morning and no bloods done over the weekend, so I had to wait and wait to see if I was going to get discharged or be in for another day. Eventually, Dr Spencer's Jr Doc turns up to tell me I'm ok to go... no proper results of the scan and blood test, just I'm ok to go...this is great but it hardly settles your mind! Scan was clear, ok but how's my liver function and anything else from the blood test! It's just cheerio and we'll get you back in 6 weeks at out patients.

A quick thank you to John from Metheringham and Patrick from Skegness- 2 guys also on the ward and we had a bit of a laugh which always made the time go just a little bit faster. Hope you are both on the mend.

Pleased to get home, but still feel quite tired- must be the antibiotics (I'm on 2 different ones: Metronidazole and Ciprofloxacin) which I need for another 3 days... side effects seem to be metallic taste in the mouth and light headedness.

Another bullet dodged by the look of it PLUS another condition that can be fatal if not treated and also another condition that isn't covered by Critical Illness Insurance. *sigh*

Here's a final glimpse at Lincoln's NHS food... from vaguely edible to crazy... just look at that jacket spud and how much cheese they gave me. CRAZY! 😂😂😂

Not critical, just ill.

So much for Flanders. I've been training and looking forward to my trip to Belgium for months and what happens...I get sick. Bugger.

It began weeks ago. In fact it took hold on Easter Sunday properly. I'd been to Derby Velodrome to do a shoot and I didn't feel right before that but knew I could get the shoot done even just on adrenalin and collapse after if needs be. I'd put how I felt down to overtraining... I ached everywhere. All my muscles just wanted to stop and this lethargic feeling was getting worse until the week before Belgium and BANG, that's it fella, you is going down wiv da flu! and there was nothing I could do to stop it. I text the guys that it was looking unlikely I was well enough to go... After all, it was 155 miles, hardly a Sunday steady ride, this was the full monty. So after the initial "we're not gonna go either" (great, now I feel guilty too!) Terry and Andy did go and had a fab time. Me? I'm at home, sweaty, coughing, eyeballs ached, sinuses really hurt and my entire body had no energy whatsoever. And so it continued for days which felt like an eternity! It's been years since I've had anything like this. Was I contagious? Well so far the family are fine which is a small miracle in itself!

So now it is two and a half weeks since I was floored. How do I feel? Well I went out on my bike yesterday for the first time and that felt good, which is a step in the right direction BUT I feel really low in my mood. Apparently this is normal according to the internet(!) and I shouldn't fight it.... Great! Also got night sweats... No idea if this is normal. The whole thing is pissing me off so that's not helping either. I'm not a good patient am I!!! Ah well, roll on warmer weather and me cheering the f**k up!

Thanks to Andy and Terry for bringing me some Belgian beers home. Really appreciated 😁 and best sort of medicine for sure.

Surviving Critical Illness

There is now a little band of people muttering about Critical Illness Insurance (CII)

Why? Because they were critically ill and their insurers didn't pay out because they had the wrong type of illness.

Absolute bollocks I hear you cry! Couldn't agree more and I wrote a piece about it all in 2011- here's the link.

Anyway, things have begun to get interesting and we have started a Facebook group up in an attempt to find others who have fallen foul of this insurance 'scam'

If you know anyone this applies to, get them to join. We need as much support on this as we can get.

To this end and to STOP insurance companies making up their own definition of what actually constitutes "critical illness' we need NHS England and any other medical bodies and institutions to agree on a clinical definition.

In a recent meeting with Dr Ron Daniels, founder of Sepsis UK, we came up with the following:

Critical Illness is a non-specific, life-threatening illness which requires treatment in an Intensive or Critical Care Unit (ICU, ITU, CCU etc.). Critical Illness is defined by the severity of the illness not by the condition that causes it. Typically critically ill patients require advanced respiratory support and / or support for at least two organs. Critical Illness includes all complex patients requiring support for multi-organ failure.
This definition is in line with Level 3 care - Dept of Health 2000.
Time scale: this definition does not rely on a time scale. Diagnosis of Critical Illness and the provision of Critical Care may be applied at any stage of a patient’s illness and its duration is determined only by clinical guidelines.

Recovering from the mental and physical trauma of critical illness is tough. Survivors often feel confused, vulnerable and isolated; some are even diagnosed with PTSD as a direct result of their experience. This situation can be exacerbated by crippling financial shock. Many survivors are unable to work for an extended period and some find it impossible to return to a normal, full time career as before. It is to avoid these circumstances that critical illness cover is purchased.

Unfortunately CIC/CII is not what it claims to be and many critical illness survivors find they are not covered. Sepsis is the single biggest admission diagnosis to critical care in the UK and is second only (current research) to heart disease in cases. Sepsis (which from anecdotal evidence is a component of 70% of critical illnesses cases) along with UTI, pneumonia, asthma and nearly 400 other conditions we have found to date are not covered by this insurance. In other words CIC/CII covers less than 10% of the conditions that can make you critically ill.

There is no established clinical/medical definition of critical illness which allows commercial interests to define it for their own ends. We believe that a condition based definition is, at best inappropriate and misleading. There is no moral hazard with critical illness insurance, no one sets out to become critically ill and you can not chose what condition you get. This effectively means policy holders are paying for a very expensive lottery rather than the security and piece of mind as the insurance industry would have you believe. This makes it unfit for purpose and can be compared to PPI.

It's been a while!

Ok. I'm sorry. I've been a right slacker. No posts for ages but this is about to change.
There's been a number of things afoot that have brought me back to my beloved blog.
To start with, I turned 50. Has this effected me? Of course not. Ok it's a significant number and it means I'm getting old I suppose but I'll use it as an excuse to enjoy myself! It's an excuse for more bucket list bike rides and that's exactly what will be happening.

What else? Well I wasn't going to do any charity work this year but that soon changed- thank you Rick Lister! I'll be riding the London 100 in July. Usually, my charity of choice would naturally be Sepsis UK but I've decided to mix it up a bit and I looked for a charity that cares and educates about PTSD. As a lot of you will know, cycling and PTSD go hand in hand for me so it's a perfect pairing: this year ladies and gents, I'll be riding on behalf of MIND. Their info on PTSD is really useful and they support so many other mental health problems. Great work guys, glad to be part of the team.

I'm also part of a trial steering committee for ICNARC on a project called POPPI (Provision Of Psychological support to People in Intensive Care) This is a real big deal insomuch as I hope this can make a difference to any patient coming out of ICU. If PTSD is caught early or before it sets in, it'll make all the difference. As patient representative, I sincerely hope my experiences can help. First meeting of the steering committee happened today. Somewhat daunting being surrounded by medical professionals and statisticians, but totally absorbing. Just hope I'm of use!
End of next week I've been roped in to speak at Grantham Hospital about surviving sepsis. Hopefully more about that in another post.

As for my cycling, the 'North Village Boys' are preparing to head off to tackle Flanders. This one happens first weekend of April and is about 150 miles. Setting off from Bruges, we are hoping for a tailwind before hitting the cobbled climbs as we approach Oudenaarde. A tough ride and the furthest I'll have done in one day. Prey for us!

Later in the year we're off to Northern Italy to have a crack at cycling up the Stelvio pass. This is an iconic Giro D'Italia route with 48 switchbacks and 6000ft of climbing. Should be a challenge! Though look at the photograph... how could you not have a go....it's stunning!

We'll be riding in the Gran Fondo Stelvio so there will be more than just the pass itself. I'll hasten to add, we're doing the medium route- having seen the Mortirolo and its gradients, I think that 'hill' on its own would finish me off!

 

 

Stelvio Pass

So assuming I/we survive this 'jolly' my charity ride happens at the end of July and that will be the Prudential London 100. As usual, I did not get a place in the ballot- I think it must be harder to get offered a spot that the London Marathon and so I've taken a charity place with MIND.
Why MIND?
Well, most of you know I suffer with PTSD- not as bad as it was 4 years ago but it is still there- I'll occasionally have flashbacks or bad dreams or something will trigger me off and so what do I do to try and combat this?... I ride my bike. Perfect match: a charity that raises the profile of PTSD and raise money for them by doing the thing that calms me from my flashbacks.

 

Yes, it's that link again PLUS I'm bringing back my badge I used years ago- the Go With Crow logo, so you might see that popping up on social media.

Think that is enough for now. Signing off, but as Arnie used to say in The Terminator..."I'll be back!"

Cycle4Sepsis

What a fantastic few days this charity ride turned into.
Setting off from Lincoln Cathedral, a small group of friends and The Lincolnshire Echo turned out to see us off. (Echo article here)
Many thanks also to Chris Vaughan for shooting some of the most important images of this ride. I've known Chris since he was a teenager. In fact he did some work placement with me when he was first starting out as a snapper and he's a good friend and not too shabby with a camera!
Our first stop was less than a mile away: Lincoln's ICU. We met up with ICU's lead clinician for ICU Alan Liddle and two ward sisters: Adele and Sally.

 

Now, Alan and Sally had both looked after me during my 'stay' in ICU. Adele, I'm sorry to say I did not recognise BUT it turns out she too had looked after me! According to my wife, Adele had prepped me ready to go to Nottingham QMC however it turned out I was still too poorly to be moved. Adele, if you read this, really sorry I did not recognise you :(

Seeing these guys was really emotional for me and a fab way to begin this ride down to London.

Once we finally set off properly we headed down to Peterborough for our first stop and food. Kieran, our support vehicle driver, met up with us and we refilled bottles and prepared to go again with a further 50 miles down to our overnight stop in Cambridge. On the way I'd also managed to find a few comedy sign posts... here's the most tasteful! If you really want to see the others, you'll have to search Twitter! #cycle4sepsis

Cambridge finally!

The A team with our brill support driver

 Day two and we made our way over to Addenbrooke's Hospital for our departure point.

Kieran was really getting into his Tweets..Can't tell he's a copper from this Tweet can you!

A few pictures there and we headed off to Stevenage and our next port of call at Lister Hospital. Here we were met by an old friend of mine, Gill....We'd not seen each other for over 20 years! We had kept in touch on Facebook but to meet after all this time was fantastic...and she'd even sorted us some lunch out which was really appreciated! Thanks Gill x

Listers Hospital

From here we broke the ride down as Jorg's knees were suffering a bit...fair play to Jorgy... he's not a regular cyclist so to manage 120 miles on day one and another 80 on day 2 is a pretty good achievement for any cyclist! Chapeau Jorg!
So with a brief stop off in Elstree and a dodgy coffee (you'd think it would be a big old place as the film studios are here but there is nothing!...no cafes only a corner shop! Think maybe Pinewood is a bigger place but it was the wrong way for us by this point) we began our final legg for the day to Uxbridge.
A fairly easy roll into Uxbridge and meet up with the other riders at the Travel Lodge and a bit of a gathering in the local pub

In this picture you've the Lincoln, Scotland and Wales teams...soon to be joined by Yeovil and others.
After a very 'snug' night (all 3 of us shared a room!) we grabbed some breakfast and began our final 20 miles into Westminster. Now, London commands a different style of cycling and you do have to have eyes in the back of your head. Having said that, I really enjoy dodging through the traffic, so had a great time. Jorg was a bit more cautious as he'd not cycled in the chaos of London before but we saw the sights- I took him passed a few landmarks.. The Ritz, Piccadilly Circus, Trafalgar Square etc before finally zooming up and down Westminster Bridge.... There was noone there!

We were the first to arrive....but we didn't know what to do!... Okay, let's go around the corner to the public entrance of Westminster and have a look to se if anyone's there.... We saw the Sepsis Trust gazebo so we headed to that...and to big cheers and cameras...fantastic! When we got there Ron Daniels was there to greet us "Hi Phil- well done guys!! Where's everyone else?"..."erm this is it, we've not seen anyone else yet"

The applause stops. The camera is switched off

"Oh"

"erm, could you go round again and find the others and all ride in together for the TV"

*sigh* "Yes, no problem" :)

So off we go again...After fighting through the lights back onto Westminster Bridge, we finally see a couple of Sepsis jerseys and within 10 mins a good crowd of us had assembled...
TAKE TWO!
In we go and we 'arrive'

And so with a few pictures, a bit of food and drink we pop our bikes onto our support vehicle and get ready to set off. I certainly think we made some real good friends on this few days. We didn't meet many survivors but it didn't matter. We were all there for the same reason.
What did I get out of this event? An extremely emotional beginning at Lincoln ICU and a fantastic cycle with near perfect weather (we even had a tail wind) and comradeship not only from Jorg and Kieran, but also from the other teams.

Thanks to Lincoln Lexus and Allen Signs

I'd like to thank my team mates Jorg and Kieran. Jorg for doing a cracking ride. Really well done mate- that is not an easy distance to do! And Kieran for keeping us on our toes with the DRIEST sense of humor that only he could get away with...'you think about that!' (sorry- team joke)
Thanks also to James at Lexus Lincoln for the support vehicle (and to Kate McFarlane for putting me in touch with James!) and to David at Allen Signs for the livery. The car was brilliant and the graphics just set if off perfectly.
Thanks also to Ron Daniels. I've been in touch with Ron since the beginning of 2011 when there was just 24 of us moaning about sepsis to him. Cheers for being there Ronald!

Also to Terance for being the goto man for the event. Brilliant to meet up with you. Keep in touch buddy!

And finally, to all the friends who have supported and donated to my JustGiving Page. As you can see below, we raised a FAB amount...really- thank you for your support. This IS a charity WE both believe in and as you know, is very close to us.

 

A final note

As some of you know I had a critical illness insurance policy that would not cover me back in 2010 with sepsis not being classed as a critical illness. In November I'm meeting up with Ron and a chap called Max to discuss how we can change this around. Knowing you're not the only one is a help but I think we will have our work cut out to make a difference on this issue. I'll keep you posted!