Sunday 14 December 2014

Just because I'm a Hypocrite, doesn't make Me Wrong

I know I'm an inverse snob. I doubt the ability of aristocrats to run the country for the common good. Actually, that's not true. I doubt the ability of Tories to run the country for the common good. I doubt their will to and their motives too.

I think in my heart that Osborne and Cameron are privileged and arrogant and incapable of empathising with about 99.8% of their own public.

If it placates my critics at all, I know that I do this, I know that it's unreasonable and I know that it will never quite be kicked from my council estate and heavily chipped shoulder.

I also know that a long line of Labour politicians have come up through very similar backgrounds and I didn't doubt their ability to understand my life. Three of the most aristocratic of all were my very favourites.

So I'm a hypocrite.

But come on! They do absolutely nothing to confound my prejudices.

It's like they actually attempt to be as aristocratic as they possibly can.

It seems champagne quaffing has doubled since Cameron came to No. 10 B40sNCnCIAE5m6f.jpg

It's perfectly possible to google pictures of our Prime Minister, Chancellor of the Exchequer and Mayor of London in Auber-elite Bullingdon shirt and tails.

Osborne discussed the Autumn Statement in which he wanted to return spending levels to those of 1930, from a Bentley factory.

Something that sounded like quite a good idea - the Character Innovation Fund - ended up being apparently about "instilling a military ethos" in young people. All very Dad's army.

Our Prime Minister has averaged 5 holidays a year. Whilst not even attempting to look like running the country taxes him even a little bit. (Pun intended) David-Cameron.jpg

It's just all so very depressing. I feel like I've inadvertently wandered into an Edwardian Novel. The poor laws are alive and kicking utterly trumped by about 7 of IDS favourite cruelties. We're blaming immigrants just like they do in Tressell's Ragged Trousered Philanthropist 100 years ago.

Can't we just do the 60s again instead and pretend this was just all one awful LSD trip?

Thursday 27 November 2014

I Know My Trending Hashtags

I don't know much about tech - several of my friends will splutter at this understatement.

I also don't know much about social media, despite popular opinion.

But I do know about trending hashtags. I've used them to my advantage many, many times and have had many top trending tags, including one global one.

I've noticed the anti-leftie rapid response unit are claiming that #CameronMustGo has only trended for 5 days solidly because a small, dedicated group of lefties have been tweeting it non-stop, even creating multiple accounts to do so.


It's true that a tag can initially trend with relatively few accounts, but the only way it can continue to trend is if new accounts tweet consistently. Volume does NOT create a trend, only unique users.

You might want to share this to counter the propaganda.

And if you doubt what I say is true, do you honestly think if hashtags could be faked so easily Amazon and Apple wouldn't be top trending every day? Or similarly, that the Labour Party wouldn't ensure that such a convenient tag was right up there too?

Tuesday 25 November 2014

The Unum Paradox

Those of you who saw my article about an invitation to speak at a Unum event may know that the responses in the comment thread were fairly inconclusive. About 50% of the responses said engagement was key and to go, the others said they were just using me and there was a danger my credibility would be compromised.

In the end I decided those worried for me might underestimate my Machiavellian streak and that as long as I read from a carefully written speech and posted it here afterwards, it would probably do more good than harm.

So for those who are interested, a copy of the speech I gave is below. I think on balance it was valuable. There was a good mix of 3rd sector and corporate representatives though I can't share who as the meeting was held under Chatham House rules. Nonetheless I insisted on sharing my speech with you all and the Unum representatives readily agreed.

I hope you think that what I said was valuable.

"It's was a very, very, difficult decision for me to come here today. Not physically, but ethically. Rightly or wrongly, the sick and disabled people and their organisations I usually speak to, believe that the corporate world is a cruel and callous one. One concerned only with profit and tax receipts. Can we really blame them after the many mistakes of the last decade or so? There are few companies that know this better than Unum.

But we can't stay in that place of mutual mistrust and justifiable fear forever. At some point, both worlds have to be prepared to listen to each other and find a better way forward. People will only suffer until we do.
That’s why, after much deliberation, I decided to accept the invitation to come here and speak today. 2 hours ago I was in a hospital bed, hooked up to an IV feed pumping calories directly to my heart. I didn’t look like this either. I've spent 8 weeks of the previous 12 in hospital, I've had major surgery to remove yet another 50cms of my bowel. I have less bowel than I need to sustain myself with food alone and I've had over 36 blockages causing obstruction and terrible symptoms.
However, in those 3 months, I’ve written 28 articles, given 4 media interviews, taken part in one radio show, advised a TV channel on an inequality programme they are making, spoken at 2 events and attended one gala dinner. I have had 3 meetings with politicians and supported countless disability campaigns through social media. All from a hospital bed.

If anything proves that we can enable people with long term illnesses to achieve fulfilling work lives, it's this. There are ways of enabling those who choose (emphasis) to continue to work to do so, no matter how limiting their conditions. I am entirely my own boss, I can choose when I can manage to work and when I can't. I can pace myself, and set my own deadlines. If I can do it, then so can an employer. I know, because I have enabled hundreds of sick and disabled people to do exactly the same. If I can urge you all to do just one thing after today, please read the comments below an article on my blog, (the Diary of a Benefit Scrounger) entitled “I am Spartacus and I….." I believe it will transform the way you see this issue.

But we are the first generation who must deal with it. Just 50 years ago, people like me would have died. But as the briefing to this event pointed out, we can now ensure that people live with serious illnesses indefinitely and up to 50% of 50 year olds will have at least one serious long term condition. However, we can’t yet always do it comfortably.

Employers must learn to address these problems much more creatively than we do at the moment. Work must be totally flexible - often flexitime, part-time or annualised hours are not enough. We must enable home working much more commonly. Those who need to work in “Slivers of time" must retain the protections and rights of employees on permanent contracts. Finally, employers must learn that retaining expertise and experience can be compatible with large chunks of sickness absence or considerable reasonable adjustments. It just doesn’t make any financial sense to lose the best employees, simply because they can no longer commit to everything they did previously.

For politicians, they must ensure that there are no penalties and only incentives to work. Universal Credit would NOT have done this adequately, despite the rhetoric. They must make schemes such as Access to Work available more freely, though sadly we have seen an erosion of A2W rather than an increase. They must allow quick, easy returns to social security support if work fails and they should consider some kind of portable lifelong fund for permanent or degenerative conditions that could iron out some of the roller coaster of sporadic ability.

I've learnt that the gulf between academic or political analysis of the employment market and long term illness, and lived experience are very different worlds. As a campaigner and someone living with a serious long term illness myself, I have a virtually unique perspective, as I’ve also attempted to produce academic analysis. I know myself that good intentions sometimes evaporate when crowbarred into words on a page. Conventions can dilute passion until it’s all but lost. Perhaps most of all, lengthy chapters of heart and soul can be misrepresented in a media world concerned only with soundbites.

How does it REALLY feel to be in constant pain? We might think we know, but we don’t. I have effectively had Salmonella for 31 years. But human nature doesn’t allow us to believe that could be possible. Sometimes I struggle to believe it myself. Yet I’ve lost count of the times close friends or family have told me of a recent food poisoning in sheer horror. They will say “I thought I was going to die, I was clammy and shivering, I passed out on the bathroom floor. I must have been to the toilet 15 times and I was sick until my throat bled.” And they simply can’t bring themselves to believe that I feel like that every single day. Even people who have seen me exactly as they describe countless times can’t believe that it’s really that bad all of the time. We’re programmed to forget severe pain - If we weren’t no-one would ever have a second baby!!
But the fact is that no amount of evidence or statistics or research - or even good intentions - can enable someone who has lived a pain free, healthy life to truly understand those who have not.

The single most important thing we could do is let go of our paternalistic and sometimes judgemental attitudes to ill health and embrace the vast experience and creativity of those trying to be the best they can. If an employee has decades of a previously unblemished sickness absence record, it is extremely unlikely that they became a hypochondriac overnight. If they insist they need an adjustment you believe is unnecessary, it’s vital to stop and ask ourselves if we can really understand the need.

The ONLY (emphasis) way to design and implement schemes or policies that will work for people with long term illnesses is to co-produce them, ensuring that the people who really know what is needed have an influential say in development."

Comments were invited and discussed after the speeches and I pointed out that fatigue is the most cited factor preventing people with long term illnesses from taking or continuing with work. I said that pain can sometimes be treated, symptoms sometimes controlled, but there is just no defence against the often paralysing fatigue that is present in so many long term conditions. Simply having a comfortable space or two that staff can use to rest or even sleep in for a while could help many to increase their capabilities. It would also help with the "brain-fog" that so often accompanies fatigue, allowing someone to return fresher and more productive later in the day.

Friday 21 November 2014

Disability Innocence

Children have no guile whatsoever when they first come across disability. Perhaps a "person with wheels", or a lovely doggy with the "person with funny eyes". They might stare in curiosity at "that man's funny face" or ask an embarrassed parent "Why has that child got no hair?"

And the key point I wanted to make in this article is glaring out in that last example. Embarrassed parent.

Children are totally innocent. They haven't learned to judge, it will be years before they know what discrimination or prejudice are. For those first few precious years, they are simply curious. It's their job, it's how they learn.

So little Tarquin or Kylie stare at me on the days I use a wheelchair or supermarket scooter with no shame at all. Shame is something adults create and in turn, inflict.

"Tarquin!! Come away darling, it's rude to stare! NO darling, the nice lady won't give you a ride"
"Kylie! Get 'ere NOW!!! Sorry darlin'. (To me) FUKSAKE, KYLES, NOWWWW".

And so we teach our children not to speak to anyone "different". We teach them that it's rude to even look at people with disabilities. We teach them not to learn about them by asking the questions that stem from their natural, childlike, curiosity.

Is it any wonder we grow into adults uncomfortable around any kind of "difference"?

This lovely list of children's books from Scope make great gifts for young children, encouraging their innocence and natural acceptance. I'm sure you'll be buying Xmas presents in the next few weeks and I'm sure many of them will be for young children, so do consider getting them one as a stocking filler?

Click here to go straight to the website  : 

Thanks to Scope for sharing it.

Another friend, Virginia Moffat (@aroomofmyown) recommended this book too with a central character with a disability : …

But What Would Labour Do?

As we gear up for the general election campaign, I've lost count of how many left leaning voters have told me that Labour are no longer a centre left party/are exactly the same as the Tories/are part of the neoliberal consensus etc etc.

Certainly, there are many things about the modern day Labour party I'm not proud of. If anyone knew just how frustrating I have found my dealings with them, how fiercely I've fought them on social security issues and how cross I am about the things I haven't been able to change, no-one would accuse me of naivety in the comment thread. Sadly, most won't know and will accuse.

But to say Labour would be no better than this coalition is just bizarre. It doesn't matter how we look at it or what justification we use there are only 2 parties in the UK that can win a general election, Labour and the Conservatives. All the while we retain the illogical first-past-the-post system we have no choice but to accept this. If we don't, we allow the Tories another 5 years by default.

I absolutely guarantee that my comment thread will be full of Iraq, trident, 10p tax rates and PFI, but I've just never understood why progressives insist on only seeing the bad yet dismiss all the good.

So for the record, the following list are the policies Labour have announced for 2015 so far. Under absolutely no definition could this list be thought of as right wing. None. Is it perfect? Of course not. Do I wish they would go further? Of course I do. Will they stick to every one if they win in 2015? None of us can possibly know. Sadly, you still can't get crystal balls on Amazon.

But the list represents the progressive Labour party we've had for decades. Doubt them, push them, hold them to account, but if you want the Tories out and you live in a marginal seat, voting for anyone but Labour will get you exactly what you most fear. 5 more years of Cameron.

-An £8 minimum wage
-Fight for a living wage 
-Repeal Health and Social Care act
-Repeal the Gagging law
-Repeal the bedroom tax.
-An end to inaccessible WCA centres
-200,000 new homes pa by 2020
-A mansion tax
-A freeze on energy bills 
-Guaranteed jobs or training for young people out of work for a year or longer
-A clampdown on exploitative landlords & more stable, secure rental contracts
-25 hours of free childcare for 3 & 4 year olds 
-A clampdown on exploitative zero-hours contracts.
-Integration of health and social care
-Maximum 48 hour wait to see a GP
-Mental health training for all NHS staff
-A reformed WCA overseen by sick and disabled people
-Penalties for every mistake Maximus make
-ESA claimants out of the work prog
-Reverse the 45p tax rate back to 50p
-A clampdown on payday lenders and tax avoidance
-Increasing a tax on bankers bonuses

Thursday 20 November 2014

Viva la Geek!

I'll take the geek thanks. When it comes to voting, obviously. 

A young Ed Miliband with a touch of the Harry Potter about him

David Cameron (Top row, 2nd from left) and Boris Johnson (Bottom right)

These 2 images alone ought to see Labour with a 20 point lead in the polls. 

Monday 17 November 2014

The Unwanted Guests

I try incredibly hard not to air any dirty linen in public, but I am totally sick and tired (no pun intended) of self professed "real disabled people" who insist on patronising, belittling and criticising those disabled through long term illness. Even of those with no disability at all who ruminate and opine on how I should classify myself and what I should be entitled to. So called "experts" covering their enormous prejudice with a fig leaf of academic lexicology.

For decades, thousands of individuals and hundreds of disabled people's organisations (DPOs) have campaigned fiercely and justifiably for the empowerment and inclusion of people with physical impairments. Using the social model of disability that states people are only disabled by the rigidity and stigmas imposed by society rather than the various impairments they live with, this has led to huge improvements in the way people with disabilities live their lives. A focus on independent living and mainstreaming has opened up the world for many who were previously written off.

But in the last few years, those of us most under attack from the current political obsession with "welfare reforms" have found a voice too. We are merely an unwell needle in a haystack of disability, yet it would appear we threaten the old school disproportionately. Concerned laments and wails of outrage ring out each time any of us dare to say anything at all. No matter that our livelihoods are under attack, our homes suddenly insecure, our health threatened still further by ignorant politicians. Should we dare to try to fight for our own survival, we meet a barrage of insults and are told off for "speaking for all disabled people". Which is ironic as that's exactly what those who are most critical  have done for decades.

I've been regularly and insistently assured that the social model of disability applies to me just as it does to those with congenital or physical impairments, yet how does society disabled me? Even if we lived in a utopia of inclusion and acceptance, I'd still vomit on my bosses shoes and spend most of my day in the toilet. An acceptance that there is any medical element at all to any disabilities at all stems from the fierce opposition those with physical disabilities put up to being "medicalised" and dismissed throughout history.

And it is utterly clear that these old schoolers do not want to be associated with us poorly people at all. They will jump up and down in outrage at this, deny it forcefully, but absolutely everything they do and everything they write betrays how they really feel. there have even been discussions about "separating us out" from disabled people and removing entirely the support we rely on if we cannot work in a self-supporting way. They criticise the language we use, the way we perceive ourselves, our symptoms, our fears and our aims. They have called us "fake disabled" "lazy and workshy", some have even accused us of wanting them killed at birth or re-institutionalised. How can there be any kind of sensible debate with accusations like that bouncing around every word we dare to utter?

The simple truth is that we are the first generation to benefit from enormous medical advances that have saved the lives of those who would previously have died young from serious illnesses. But we haven't yet learnt to do it comfortably or adapted to incorporate the skills of those affected. From distancing from us entirely to criticising every word we say, the old schoolers have proved very grudging hosts to this particular party.

But here we are, invited or not and we're here to stay. Over the next few decades, the proportion of those disabled by illness will increase and we will need to find a new discourse to explain our challenges. A post-social model if you will. One that accepts that there is a medical element to some disabilities and it doesn't threaten the whole to acknowledge it. One that faces up to the barely veiled sneering they have approached us with so far and tries to genuinely find ways to move forward. How utterly ironic that those who have fought so hard and so long for inclusion now feel much more comfortable excluding the nasty, untidy impairments that don't quite fit with their view of the world.

If we can't manage to make the transition towards this basic alliance, perhaps the least we could do is stop shooting off on a hair trigger every time someone dares to express their own issues and concerns. Perhaps we can learn that just because one person holds a particular opinion,  they don't speak for anyone else. However, should that opinion become very popular and should many people choose to read those opinions and share them - of their own free will - then all we can do is accept that there really are serious issues that led to them being expressed.

Saturday 15 November 2014

DWP admits investigating 60 deaths since 2012

Enormous credit to John Pring for the unremitting pressure he has put on the DWP through Freedom of Information requests. This one has uncovered that the DWP have investigated SIXTY DWP related deaths since 2012. As a John McCardle from the campaign group Black Triangle points out, if the government had caused an accident in which 60 people had died, there would be a public outcry. The Prime Minister would almost certainly have to resign for being involved in the deaths of 60 of his citizens.

If this story isn't picked up by the mainstream media, they are as complicit in the outrageous cover up of this crisis as Iain Duncan Smith himself.

You can read the full story here : …

"The Department for Work and Pensions (DWP) has carried out 60 secret reviews into benefit-related deaths in less than three years, Disability News Service (DNS) can reveal.
DWP released the figures in response to a series of Freedom of Information Act (FoI) requests by DNS........

Thursday 13 November 2014

Who Will Watch the Watchmen? An Open Letter to John Bercow

Dear John Bercow,

I was incredibly naive when I started campaigning for the rights of people with long term health conditions and disabilities. 

I believed passionately in democracy and that here in the UK, we had one of the best political systems in the world. 

I had always believed there were strict rules governing MPs and that they were held to account by customs and conventions that had served us for centuries. Sadly, that naivety is long gone. 

Over the last 4 years, I've learnt that democracy is merely an illusion. I've learnt that a politician can do or say virtually anything he or she likes and no-one will do anything about it at all. 

In the case of Iain Duncan-Smith, we have seen the results of a failure to govern the governors as never before. He has lied - not "misled" or "misdirected" - to parliament repeatedly. He has lied about who is affected by his "reforms". He has lied about who is protected from them. He has lied about how much they have saved the treasury and he has lied about their efficacy. He has lied about the level of support for his changes and lied about the timescales of their delivery. 

The results of his lies are clear for all to see. Vulnerable people he promised to support go hungry or are left without care or security. Nearly a million people have been driven to foodbanks. Homelessness has risen, the benefits bill has risen and the housing bill has risen. Sanctions have soared - over 500% in the case of those too unwell to work - and a fiscal black hole of billions is becoming apparent at the treasury as every one of his major schemes grinds to a halt. Universal credit, Employment and Support Allowance, Personal Independence payments, all have failed, leaving millions stuck in limbo.

Yet still Mr Duncan-Smith lies and still his lies go unchallenged. 

This petition calls on parliament to investigate those lies and hold a full and transparent enquiry into his conduct. He has even repeatedly bullied the media not to hold him to account, can he bully you too? Is there no-one prepared to challenge this man and stop his inhumanity? 

Campaigners will never rest until the scale of this man's failures are clearly exposed to the public. Until his dishonesty is fully revealed. He will not be reshuffled or sent quietly away to "spend more time with his family". No matter how long it takes, Iain Duncan-Smith will be shown as the cruel bully he is.

You could choose to make sure that happens sooner rather than later, before more thousands of lives are ruined by his incompetence and lies. You have the power to restore at least some of the democracy we have lost. But make no mistake, now or in the future, it will happen. I and many like me will make sure of it. 

Saturday 8 November 2014

Opinions Please

Ah, decisions, decisions.

My very first tweet about Maximus last week elicited an almost immediate email from their PR director asking to meet me for a "chat". He spent several paragraphs persuading me that Maximus in the UK was an entirely separate company to the Maximus in the US so roundly exposed by the dedicated disability journalist John Pring.

You all know I believe in engagement whenever it has even a chance of making things better for sick and disabled people. You also all know that I vowed years ago I would never become one of those people who believe their own opinion is more important than the opinions of those they claim to represent. I will never sneak around in secret making deals and suggestions that haven't come from you. I will never take anyone's money or tempting offers of personal gain in order that you can always be sure what I write isn't compromised by anyone or anything else.

A long time ago, the PR boss at Unum got in touch. I met with him despite much personal anxiety and he told me everything the Maximus guy said last week. (Which gave me a wry smile. If I'd known they were all so saintly, I could have given this up years ago ;))

I've stayed in contact with the Unum guy and I do believe it has helped us several times. I've also long been in touch with their counterpart at Atos who has often been able to clarify things or even help me to oppose IDS and the DWP

But my Daddy always said "Watch the tiger when it's licking your ear". Seriously, he must have said it several times a week my entire life. I'm far from silly or gullible when it comes to politics. I'm well
aware that the only reason these men bother with me is to improve their own reputation or counter
some of the toxicity of the disability debate in the UK. I ve always believed that as long as it benefits us, there is no harm and I've always thought very hard before using anything they've told me.

But later this month, Unum have asked me to attend and speak at an event they're organising on the NHS aiming for more focus on prevention and less only on cure. This is something I feel very passionately about, and if me speaking could change the way healthcare is delivered for the better, then it seems pointless to refuse just because I might find the hosts distasteful. I am told that there will be attendees from the corporate world that campaigners like me often struggle to reach.

So as usual when these things crop up, I thought I'd leave the decision to all of you. Of course Unum want more prevention, it would mean fewer claims they have to pay out on, but I very much want more preventative action too, so I can't see why it matters who does the inviting. Of course, they want to be able to say "Ah, but Sue Marsh is coming, see how much we've changed." But I'm not against being used if the using goes both ways.

I will never be corrupted by these men and I will never be less than 100% honest when I discuss them, but if you all think it's a matter of principle, then I'll respect that view. If you think something could be achieved by having our view represented in theses kind of circles for once, then I'll gladly attend and do my best for all of us.

I'd be grateful as ever, if you could leave your views in the comment thread below.

Wednesday 29 October 2014


I am grazing.

You will think it is the dream life. I am struggling with my rebellious bowels in a kind of crocodile-esque death-thrash. I have to be ingenious with my induction of calories to the point of a masters degree in nutrition.

I have to ingest thousands of calories a day to have a chance that enough will cling to the edges and think fat. Maybe 3 or 4 thousand calories a day gives me some chance of simply maintaining this precarious 38 kilos I'm dicing with.

The TPN (total parenteral nutrition or IV feed, I'll stop explaining it soon honest) looks very likely as clearly this kind of lifestyle isn't sustainable or desirable. However much you much you might think it would be.

So, I have to have a steady and extremely appealing list of delicious high cal treats to convince me to keep munching, cow-like, stuffing my little foie-gras liver. At the same time, these endless banquets of tapas and sugar need to leave so little residue as to pretend they were almost never there at all. I need to sneak the calories in, hidden behind loops and valves and whatnots, trick my guts into not noticing.

But even more ingeniously, I can't just munch on additives and chemicals and false cheese. Nope. Whatever I get has to be the "made-in-someone's-kitchen" variety, ergo the most expensive in almost all cases. If I don't follow this crucial rule or try to fudge it, the whole exercise is pointless anyway as it just makes me more ill. So basically I need a healthy, unhealthy diet with thousands of calories and no residue. I challenge the best dietitians to better mine. When I can bring myself to do it properly.

On the odd quiet month where there might be a little more about for good food I might make sure I get a grazing selection twice in the month. This is nowhere near enough, I need about 2 or 3 a week every week.

So favorite examples would be a rocking cheese plate. Nibbles on high cal cheese and barely-there water biscuits with the odd grape as a treat if I'm feeling rebellious. Homemade fudge, ice creams of enormous cream and sugar content, honeycomb, fruit jellies drenched in sugar, fresh squeezed lemon and honey with hot water (and a pinch of salt for the electrolytes. Add ginger and garlic & chicken stock for a super-food broth.

Marshmallows, jelly babies, jelly beans, bruschetta type crackers, antipasti under oil in jars. mop up the oil too. I have found these tiny hot red chillies stuffed with anchovy paste so salty it makes your eyes water. They're suspended in a chili oil  (I need lots of salt too.) Cured hams like parma or prosciutto. Toast on a light bread like a bloomer. Piled with as much butter and jam/marmalade/honey/chocolate spread as I can balance on. Dipping tea biscuits like Rich Tea in golden syrup because it's yummy. Having tea-dunking biscuits by you at all times so you can dunk a biscuit to dissolvey mush pretty much hourly.

For food, mashed potato or the middle of jacket potatoes with butter and cheese sauce, bacon sandwiches with crappy white bread. In this instance, the crappier the better. Stuffed pasta parcels with butter and fresh sage, tinned fish of all kinds, (quick pause there as 10 year old came into bedroom to give me an olive. We all play this game.) When they go to the fun fair, they wouldn't dream of coming home without a candy floss for Mummy.

Croissants with lots of french butter and as much jam/marmalade/honey/chocolate spread as I can balance on (yep, that's a theme. Balancing). French butter is an even-higher-level treat but if I have some I pretty much put it on everything I eat until it's gone. Smoked salmon, avocado, bananas, yoghurt, custard, rice pudding (you guessed it, with as much extra sugar or cream, preferably both, I can tolerate.)

If energy allows, and this isn't really one of those periods, stuck as I am in bed in a sort of in-hospital-from-home limbo until I can be made a little more stable, I make soup. Pretty much from anything I have combined with chicken stock, onions and some spices or herbs. Whizzed up, most delicious veg are fair game and this is where I get the most nutrients. I can't even eat much in the way of fruit or veg, so this way ensures I get all the nutrients I can from what I can have. Ditto casseroles. I can steer clear of most of the meat in a casserole, eat the very soft veg like parsnips or carrots and get all the goodness from the meat and the vegetables in the gravy.

But now we're in the functioning-relatively-normally-if-able-to-eat-hot meals-stage.

At the moment, if I can't keep it by my bed, or get it in the fewest movements possible from a fridge, cupboard or freezer, it's not really much use to me.

Nothing I need to eat is on most people's necessity list. Every last item is deemed a "treat" or a "luxury". No-one needs to buy peanut butter ice-ream and salted caramel, the idea is so far from what we learn about absolutely everything that resembles a "normal" diet. We're programmed to think of these foods as "bad" or "fattening" or "unhealthy". The stigma is huge.

So imagine if you will you're a work colleague of Dave's or a friend from the school gates and you come round for an evening. You know the wife/new acquaintance is extremely unwell, but not much more than that. You know it's her bowels and she has lots of operations. You go round to visit and she spends most of the night sucking sweets, eating ice ream, nibbling cheese and parbaking croissants. You'd almost certainly conclude any problems she might have were of her own making! That is so far from the idea of "healthy", I usually end up giving dietitians recipes.

You have to eat often! As soon as symptoms allow, you're right back at it. So you can't really ever be far from your grazing stash without planning. It's not just me. I've found a whole world on social media who have to eat like this every day and know exactly what I'm talking about. People who effectively stuck in bed, people with poor mobility, people who are very isolated and have little help at home, all of whom are a little too old or frail or unwell to keep weight on easily.

I always think to myself that if I was rich, it would be fine. I'd potter through farmer's markets and gorgeous little deli's in cobbled high streets buying various beautifully wrapped little mouthfuls of gorgeousness. I'd hover from Rosette to Michelin star eating delicate mouthfuls of perfection that even I can eat 5 courses of and still fancy a kebab. I'd sip high-calorie cocktails and eat Belgian chocolates for breakfast.

But as it is, I generally feel too guilty to do it, even though I need to. It's hard to spend lots of money on rubbish you won't let your kids eat. It's hard for 50% of the budget to go on your capricious whims or fancies of the day. On food you might not even get around to managing or that reappears rather sooner than it needed to.

As a final word to all high end, high cal food manufacturers : Lots of people who literally can't punch their way out of a paper bag for one reason or another buy your products. We can just about manage  folded paper packets and rippable foil, but frankly, anything more complicated or durable than that will effectively bar us from actually eating it at all. If it needs a knife, pair of scissors or brute strength, lots of us won't even be buying it.

So I manage to have a condition where the thing I have to do is sit in bed all day every day, preferably waited on hand and foot with people literally peeling my grapes and braving great quests to get exactly the brand or type of something I desire. Talk about a princess. It's a worry really.

Saturday 18 October 2014

So How Am I Now?

Regular Twitter followers will know that I finally managed to get home on Monday. After all of the tears, meltdowns, loneliness and fear, I finally made it through to the other side.

My operation was last Tuesday and as I explained in a previous post, the worst scenario was that I would wake up with a permanent stoma (many can be reversed in time, but mine would have been forever) and that I would have to be fed into a vein (TPN or total parenteral nutrition) for the rest of my life.

The best scenario was that there would be enough bowel left for the stoma to be reversed and I would only require the TPN a few days a week.

The scenario-that-dares-not-speak-it's-name was that I would never eat again. Somehow my bowel would be so damaged that it couldn't manage anything orally at all.

Surgeon Pimpernell was on call last week, so we knew that was his best chance of fitting me in. Otherwise I would have to wait on what's called the "elective list" for an unthinkable 6 to 8 weeks. I had just 140 cms of small bowel left (most people have 4 metres) and less than 100 cms is "Not viable" Regular readers will know that I always resisted knowing what "not viable: actually meant. Mr Pimpernell said he would have to take 70 cms away, leaving me with just 70 myself.

First Mr Pimpernell tried to fit me in on the Monday. I got to the ward door before the anesthetist decided he couldn't trust when I said I'd last eaten and he wouldn't risk the anesthetic.

I was incredibly frustrated. Us bowel disease patients know very well that we're very likely to be "bumped". Bowel cancer is often such a vicious cancer and in many cases, by the time patients get a diagnosis, it's too late. But being bumped for no reason, being bumped because yet another health care professional decided "he knew best" was almost more than I could bear.

Just as I was coming to terms with my misery, porters arrived again. This time it was about 8pm and I got all the way down to the anaesthetic room before they told me there'd been an emergency. Some poor soul had died in recovery, so was already intubated and unconscious and needed one last shot to save his life. Frustrating though it was, no-one minds being bumped for this.

I was woken up the following morning at 8am by yet more lovely porters. This time, all went well and the next thing I knew, someone was calling my name and telling me it was all over.

If anyone remembers the horrors of post-op pain relief I had at the Other Place, might like to know that my pain pump wasn't quite ready for me to use when I woke up. The loveliest nurse assured me "I'll be your pain pump Sue, you don't have to worry about a thing" He never left my bedside, giving me 10mg boluses until the pump was ready.

After a while, Dave came in looking relieved and happy. He told me to take a look at my tummy. As I peeled back the sheet, eager to meet my new stoma-buddy, I saw there wasn't one there at all! I panicked, asking Dave what had gone wrong. Had they not cleared the blockages after all? Would I have to go back to the pain and vomiting of before? I honestly didn't think I'd be able to bear it if I did.

But no, clever Mr Pimpernell had managed to salvage an extra 20 cms, so in all, I had 90cms left after all. Whilst not quite the metre I need, he thought it was worth giving me a chance to see how I went before I had to face such drastic after care.

So no stoma at all wasn't even an option on my consent form, I felt like an actual miracle had happened. What's more, they wanted me to see how I went with eating before they set up permanent TPN, so I dodged that bullet too.

My recovery has been superb - possibly the best of all the operations I've had. The most remarkable thing seems to be that all the pain and vomiting of before has gone. It's hard to believe, but I already felt better 2 or 3 days after the op, despite all the surgical pain.

So it's early days and I've got a long way to go yet, but things look so much more promising than I dared to hope. I'm convinced that the hundreds of goodwill messages and prayers carried me through, so a million thank yous to all of you.

Monday 6 October 2014

Clegg the Innocent

Never has there been a better example of naive little fishes swimming in a vast, Machiavellian pond than Nick Clegg's "Orange Bookers".

It's easy now to forget just how shocking and incomprehensible we all found even the concept of a Tory/LibDem coalition. To forget those 5 surreal days our democracy was in hiatus, holding it's breath while just 4 men decided the future of our countries behind a locked door. For 5 days and 5 nights, Cameron, Osborne, Alexander and Clegg hammered out their agreement. A vacuum where one day, history would be. 

Four men. After 29 million, 691 thousand, 380 people had voted, in fact they may as well not have bothered. The manifestos they thought they had voted for were discarded along with student trust and the last drop of belief in our political system. The party of civil liberties  were artfully convinced to give them up for the promise of a few tempting beans. 

Cameron and Osborne, foxes in tails holding knives and forks and licking their lips. Clegg and Alexander eager as 6 formers convinced they are ready to play men's games. 

Clegg went into the room with a left of centre economic position, that passion for civil liberties, a determination to see electoral reform in both the Commons and the Lords, and a pledge to scrap tuition fees. He came out having ceded to Osborne's right wing economic strategy, with the promise of a referendum on AV that was dependent on boundary changes that would see the Tories gain an almost indefinite majority in the commons, tripling tuition fees and supporting a welfare reform bill that would throw all but the most fortunate to the wolves.

Almost every policy  decision for the next 5 years was decided in that room, by those 4 men. Since then, each time democracy has tried to object, she has been silenced with either bribery, dishonesty or the Whip. From using financial privilege to overturn Lord's amendments and increasing government surveillance measures, to threatening the BBC and deleting old speeches from the internet. 

They ripped up disability living allowance and replaced it with personal independence payments in that room, agreeing to slash a random 20% of people with disabilities from the budget - it was in neither manifesto. They awarded themselves 5 years of power with virtually no possibility of challenge the very day they left the room. 

I remember Nick Clegg saying at the time "I asked a mutual friend "Can I trust this guy" [Cameron]. The friend said he thought he could and before we knew it we were feeling queasy at the sight of that new bromance flowering in the rose garden. I had always assumed that the very first thing they learn in politician-nursery-school is "You can't trust anyone."

Nothing has demoralised me more than watching previously centre left politicians with apparently, well, Liberal values, file into those lobbies, one by one, in support of slashing payments for disabled children, selling off our NHS in piecemeal chunks and slashing legal aid. I watched them argue over how terminally ill you have to be to qualify for disability benefit. I watched them decide that there was no longer any need to treat profoundly disabled children who would never work as though they had contributed national insurance, ensuring they were always entitled to support in their own name. After all, it was argued, they "might inherit".

But that just demoralised me. What disgusted me, was being assured through it all that the Lib Dems had somehow stopped the worst excesses of the Tories. I have found myself living in a country that has allowed sick and disabled people to die in hunger and despair and they dare speak to me of mitigation? 

I think in a funny way, the UK public did vote for a coalition. I just don't think they trusted either the Tories or Labour to govern with free reign. The gave Clegg a once-in-a-generation opportunity to show that coalition could work. They "agreed with Nick". A unique chance to dictate how and when he and his MPs would support the Conservatives and how and when they would not, issue by issue. Instead, he was smoothly convinced that his job was first and foremost only to "think of the markets" and "put stability above everything." He didn't even see the handcuffs coming. Or, it seems, such familiar right-wing euphemisms for stuffing the poor. 

Now, we start to see the predictable sight of the little fishes trying to swim like mad away from the shark. But it's too late to pretend they're in the wrong pond now. 

In fact, they've forgotten the idealistic, self-righteous little minnow pond they started from altogether. Now, when Danny Alexander is "pissed off" with Conservative economic policy, it is only because they stole it from him. In 2010 it was because - as he rightly pointed out - that same policy would delay recovery by 3 long years. 

Tim Farron, the last remaining token voice of the handful of centre left Lib Dems who haven't deserted the sinking ship describes the Conservatives as "borderline immoral". Any politician that thinks finding people in comas fit for work and scrapping the social fund is only "borderline" immoral has a very different definition of immorality to me. 

The total disdain voters in Scotland showed for Westminster in the recent independence referendum rang a warning loud and clear. "Reform or Die". From the actions of all 3 parties at their recent annual conferences, it seems the message is as far from getting through as it ever was. 

Sunday 5 October 2014

Occidental or Accidental?

There's the sweetest young Chinese girl in my bay at the moment.

The gulf between the Chinese approach to healthcare and ours is so vast I'm not sure it could ever be bridged. Where their approach is holistic ours focuses mainly on symptoms and disease. Where they treat the whole person, we treat just a part. Where they value prevention, we seem all too often to only see the cure.

I can only imagine what she must think of our lack of respect for our older generation and as I tried to explain the pressures on our own NHS and the frustrating delays, I felt miserable and embarrassed.

However, today, she asked me how she should pay for her food. I laughed and said it was included. She asked about her medicines too. All included, I explained. "But what about my procedures and tests?" I explained that was all included too. "But included in what?" She asked, "How do they decide the final bill?"

I said there was no final bill. Healthcare in the UK was free at the point of use.

She clearly found this concept as hard to understand as I would have found the approach of her doctors back in China.

As a full time degree student, her healthcare is free too. Before anyone starts jumping up and down in outrage, I can assure you the fees she is paying for her course would make you pass out in a clean faint. Students like her keep most of our universities going. So she's paying alright, just not here and now.

However much I may have squirmed as I tried to explain the waits she was finding so mystifying, it was matched by the pride I had in describing the most equitable health service in the world.

Friday 3 October 2014

The Handover Issue

For the 25 years I've been staying on and off at Her Majesty's Pleasure, Healthcare Branch, I learnt almost immediately never to ask for painkillers within 15 minutes of handover. At least. 30 minutes is better.

Handover is the term for when one shift goes home and the next take over. In this hospital handover starts at 7.45 am and 7.45 pm. This means I always make sure my painkillers and anti-sickness medicines are PRN, meaning I ask for them when I need them, they are not brought automatically at certain times of the day.

This means I have to ask for painkillers well before 7.30 (am or pm) should they happen to fall due around that time.

It's very hard to explain to someone who isn't in pain how totally unlikely it is that you should "forget" this crucial detail. When it feels like someone is holding a red hot poker deep in your solar plexus, you tend to make a note of the exact minute you asked and make totally sure you don't ask at a time you are likely to be left with that poker indefinitely.

But after all these years, I just can't understand why we still do it that way. 

How can we possibly guarantee that 62 patients will be able to suspend the various issues that brought them in here for 45 minutes or so twice a day? Why on earth do all 7 or 8 trained staff nurses, charge nurses and sisters take handover all at once?

Would it not be immensely sensible to ensure that handovers are either staggered, or that we ensure that 2 trained nurses sit out and remain available on the ward while everyone else is unavailable?

I mean, surely in 25 years this has occurred to somebody? Most painkillers are what are known as "controlled drugs" and are locked away. Only two trained nurses can administer them to avoid mistakes or abuse.

If any other business had to close for 45 minutes, twice a day, loss of profit alone would ensure pretty damn quickly that cover was arranged. Surely avoiding human suffering is at least as important as a balance sheet?

Thursday 2 October 2014

How Many is Too Many?

Do governments routinely cost the lives of their citizens? If so, how many lives are acceptable?

For the first question, do you ever think it's acceptable that government policy should cause any deaths at all? I image most will answer a fast and emphatic "no"

But think for a moment. It almost certainly happens all the time, all around us. Think of a short staffed hospital struggling under impossible cuts, with higher death rates than they should have. Did the government directly cause any of the deaths that may have resulted?

If homelessness rises, due to a failure of housing policy, leading to a higher than expected death rate on our streets, did the government cause them to die?

If pensioners struggling with rising bills and inadequate pensions can't heat their homes properly, and hypothermia cases soar one year, is it the government's fault?

We usually would blame the government. though coyly, we like to blame the policies, not those responsible for them. If we think of Mid Staffordshire Hospital or Winterbourne View, then government certainly took their share of the blame.

If hundreds of children started dying, there would be a national outrage, but would the public rally in the same way for homeless people? Or addicts? Is there a hierarchy within collateral damage that most of us subconsciously support?

Every day now, someone sends me a link to their local paper detailing that yet another sick or disabled person has died as a direct result of policy changes made by this government. Not as a contributing factor, as a direct result. Coroners reports regularly cite "changes to support and benefits" as contributing to or even causing deaths. It's not at all difficult to confirm what I say with a quick google search - there are hundreds of stories online, pages and pages of people claiming that changes to the social security system led to the deaths of their loved ones.

Yet here in the UK, in 2014, we're OK with at the very least hundreds of disabled people dying as a direct result of government action or inaction. Every day I read a new story, I get a little more frightened. Every new name that fades away, unnoticed by us, the public or by those who have a duty to tell their story honestly, makes me ask myself all over again "How many will be enough?"

Today, the name I will remember is Thomas O'Donnell you can read his story here

RIP Karen Sherlock

Wednesday 1 October 2014

So How Am I?

A bit like a Mum who doesn't want to tell her kids Xmas has been cancelled until Santa actually confirms it himself I've been putting this post off.

Most of you know I've been in hospital for 4 weeks so far and though I've gone into great detail about the patient care and various other aspects of NHS life, I've stayed intentionally quiet about what's going on with me.

I'm afraid the news isn't good. In fact news doesn't get much worse for a bowel disease patient. My sulky bowel has finally given up the ghost almost entirely. The metre or so left has gathered in a clumpy mess, never to be prised apart. If they tried, I would almost certainly perforate in several places, leading to sepsis and even death. The surgeon just wouldn't be able to guarantee he'd spot all the leaks. Bits that should squeeze have gone to sleep and bits that should sleep try to squeeze. Some bits are all narrow and impenetrable, others all distended with the pressure of blockages.

If I wasn't experiencing symptoms, they may have just left it to it's clumpy recalcitrance, but as I'm pretty much in permanent writhe mode, and have qualified to represent GB in the vomit Olympics, it's just going to have to go. Next Tuesday.

Normally, they'd cut the chunk out and join up the ends, but, well, I've run out of ends. There won't be anything much left to join TO. What's left of my colon isn't in bad shape which is something, but the slightly more crucial ileum will be no more.

So, that means a permanent stoma and being fed into my vein for the rest of my life. My medics seem to think there is an outside chance that enough ileum will be left to reverse the stoma at some point, but my surgeon was less optimistic, and let's face it, he's the guy with the scalpel. My medics also hope that the IV feed (TPN or Total Parenteral Nutrition - we might as well all start getting used to the term) may not have to be permanent or at least, I may get away with a few hours at night or even every other night.

I can imagine it's hard to believe that I've met this news fairly calmly. I have this feeling most of you reading this will be much more upset for me than I am for myself. But to be honest, the pain had become so constant and intolerable and the vomiting so grueling, I'd probably offer an arm too if they told me it might make it stop. It's not like I haven't lived with the knowledge for years that a stoma would be on the cards at some point, and I've known for a long time that the next chunk to go would probably tip me into "not viable," that cold term I'd tried for so many years not to ask about.

So don't cry for me lovely reader, the truth is I'll soon be freer.

This might give me a chance to get rid of all the pain - with a bit of luck and a following wind, maybe even for a long time. It should stop the vomiting and I certainly should be able to put on weight at long last with the IV nutrition - that might mean I even get a chance to get stronger.

A chance to climb trees again with my boys, play frisbee in the park, climb to holiday adventures on sunny mediterranean hilltops.

And if all of that doesn't cheer you up, if I've managed to make Ian Duncan-Smith's life this miserable at death's door, just imagine what I can do with a new lease of life.

Don't Worry Your Pretty Little Head

OK, this really has to stop.

I've written countless articles about the failure of doctors to listen to their patients. Whether that failure comes from judgement (they're "just" an addict, they're "just" depressed, they're "just" malingering) or from arrogance (I know best, what would they know, I have the medical degree) I honestly believe it is the single most dangerous factor in our healthcare system.

But the frequency of it astonishes me. I mean, it would be understandable if the odd doctor, leaning on his extensive medical training, concluded that he really did know more than the patient, but for it to be seemingly a matter of course is totally unacceptable. It's so common, I'm not actually sure many doctors ever simply accept what their patients are telling them at face value.

Where did this assumption spring from? What led such a vast number of doctors to conclude that, on the whole, patients are hypochondriacs, malingerers, stupid or deluded? It seems totally unfathomable. Are we really all so frustrating and misguided? Does experience really lead so many to conclude that listening to what their patients are telling them will only waste their time? And when so very many times under the current model this DOES lead to errors - errors that could have been avoided by listening - what on earth is stopping them from learning the lesson?

This in-patient stay, I've got to know quite a few patients. I've been here 4 weeks and I love listening to people's stories, so inevitably, I've heard quite a few by now. I was so concerned by how many people were telling me they knew what was wrong with them all along, but their doctor or surgeon thought they knew better, that I started actually asking people if they believed being ignored had worsened their situations or even brought them here.

Almost unanimously, every single one said it had happened to them.

The girl who had been vomiting constantly for 9 MONTHS since her bariatric surgery, totally convinced that something had gone wrong with her surgery, but assured that couldn't be the case. Her doctors and surgeons assured her she had simply developed a psychiatric aversion to food due to her terror of regaining weight. They were so convinced, they had only checked her stomach but had done no other investigations whatsoever on other parts of her bowel. When they finally humoured her and had a look inside, her stomach was so twisted, they described it as a "corkscrew". She had two narrowings in her oesophagus, which also "showed signs of erosion" The new Dr she fled to said he was "surprised she'd been left in that state for so long."

The woman who assured them for months her recent surgery had gone wrong only to be told for 5 MONTHS that it was simply the healing process. When they finally opened her up, they had left 12 metal clips inside her. A simple x-ray would have confirmed it, but again, her Drs were so convinced they knew best, even that wasn't ordered.

The young girl with Crohn's who told them her stoma needed resiting due to fistulas. They ignored her and did a different operation, only for her to be back here now needing - you guessed it - her stoma resiting due to fistulas. 2 operations where she only needed one, 30 or so bed nights more than necessary.

The friend in my bay who repeatedly told Drs her endometriosis was bad but couldn't even get a promised appointment. Now, her bladder, kidney and bowels are seriously damaged, leaving her with no fewer than THREE various stomas. She will have no fewer than THREE avoidable operations since because not one, but various doctors didn't listen.

I'll go on : The old lady complaining that her "back hurt" told for 3 weeks it was just a symptom of her infection. Until they found the serious spine fracture she'd been tolerating so stoically for so long.

The woman with a cyst, complaining of severe pain, told over and over it was fine for more than a year. I'm unclear of the exact details with this lady as her story of being disbelieved is so complicated, appearing to go back over 20 years, that even I struggle to follow it. The latest saga saw her told "cysts aren't that painful" for over a year, despite the pain etched on every inch of her face. Until they found it was nearly 10cms, causing damage to her kidney and wrapped around her bowel. If she hadn't fought so very hard, she'd have lost the kidney completely. She's exhausted.

And of course me, told for the last 2 years I couldn't possibly have blockages in my bowel because my "MRI was clear." Me telling them over and over that MRIs had never been very reliable with me, them refusing to simply confirm it from my old notes. They could have settled the difference of opinion with one phone call to my old consultant. The good old fashioned "conversation" method. Now it seems that part of my bowel is in such a mess it needs to be removed completely.


Not only is this failure to listen clearly extremely dangerous, but it costs the NHS vast sums of money. Patients get sicker than they should and are left to get to the point where remedial action is more serious, more costly and more intrusive. Patients spend much longer in a hospital bed than they would have if the problem had been identified and treated from the start.

This waste of bed nights is so farcical you'd never believe it. I had been here 23 DAYS before I got the nutrition I told them I needed from the start and in that time I'd had nothing more than 2 investigations that I could have had as an out patient. But admission is the only way to guarantee I'd get them before I die of old age. As for getting urgent surgery as an out-patient, that's right up there in rarity with sparkly unicorns and toothsome hens.

The only other reason I'm here is for adequate pain relief, which I could also do myself at home, but because doctors don't believe high level, acute opiate use can ever be anything but deviance, it must be overseen 24 hourly by professionals. The only way to guarantee that the pain is controlled once it reaches a certain point, is to stay in hospital. The exhausting misery of not-being-believed as you run the gauntlet of large repeat opiate prescriptions is just too traumatic. There are just so many stages of people not to believe you. Receptionists, pharmacists, Drs, locums, out of hours doctors....I promise you, several thousand chronically ill people are reading this and screaming "THIS!! SO THIS!!"

A GP who refuses to listen to the mother who repeatedly insists her child "just isn't himself" may have to see that same patient over and over and over again, wasting countless appointments until the child either reaches some kind of crisis point or is finally correctly diagnosed. After all that, so often, just one appointment would have done. If the delay means the child will then need ongoing treatment that may have been avoided, yet more or the doctor's time and the taxpayer's money is wasted.

Not only is it costly and dangerous, but it isn't even logical. Concluding so often that parent's have the  strikingly rare Munchausen-by-Proxy just isn't at all likely. Concluding that a patient who has barely crossed his doorstep in a decade is just a hypochondriac is counter-intuitive. Concluding that a patient with a pre-existing, long diagnosed condition can never be suffering from anything else makes no sense.

Even if all you care about in life is money, then this enormous, incomprehensible waste must at least be enough to convince you this can't go on.

My many, many, years of healthcare experience - not just here but in other European countries - has led me to believe that the UK uniquely, has an extremely bizarre approach to patient care. Other countries trust you to keep your own notes, send patient's for immediate investigations when they complain credibly of new symptoms and treat conditions as swiftly and as accurately as they can. Why don't we? Why is there still this paternalistic barrier to care here? This assumption that doctor always knows best and patients will always set out to mislead or "worry themselves over nothing"? It just makes no sense. Why do so many of our healthcare professionals seem to act as gatekeepers to care, rather than gateways?

If I were Prime Minister, I would order an immediate trial, effective immediately. I would insist that for one month, every doctor, surgeon and consultant in the country took their patients at face value. I'm almost certain the results would be astonishing and the reduction in burdens on the NHS would be significant.

Perhaps most importantly of all, we would avoid untold mental distress and even damage if we stopped treating patients as people who must be patronised, fobbed off and ignored.

Monday 29 September 2014

Hospital Logic Part 3 : Obs

1. Wake up your patients very early to take their blood pressure, their temperature and to measure their heart rate. This should never be later than 6am

2. Do not take any notice of previous readings. Pretend this is the first morning you've woken them, not the 27th (In my case. God that's depressing, I wish I hadn't actually counted.)

3. When already low blood pressure reads a smidgen lower - due to the patient's extremely recent sleepy status - panic. Remember it is your duty to report this as though it is an unusual event. Even though it's the 27th time it's happened. And clearly caused by the fact that until 23 seconds ago, the patient was happily dreaming.

4. Repeat blood pressure reading every 15 minutes, every morning, until blood pressure rises. A smidgen, obviously.

5. Only once you are sure there is no chance at all of the patient going back to sleep should you look at previous readings and conclude. "Her blood pressure IS usually very low." As the patient has been assuring you for the last 45 fraught minutes.

6. Remember, if the patient should become in any way frustrated or cross about this and is unable to hide this irritation due to their extremely recent sleepy status, point out that it is for their "own good." In most cases, this will make the patient compliant, however, if they remain upset, you MUST make sure you mark "patient aggressive" in their notes.

7. Repeat daily.

NB : Should patients with low blood pressure suddenly show "normal" readings, you must NEVER take into account that for that particular patient, this means they are around 50% higher than usual. Even when patient is actually having a stroke, NEVER listen to them, simply reassure them their obs are "fine."

Friday 26 September 2014

Things That Are Disposable

How often do we hear of waste within the NHS? Barely a week goes by where some distant politician doesn't remind us how very inefficient our health service is. In fact, it isn't and the latest international survey found that it was actually the 2nd most efficient health service in the developed world. We spend just 9.2% of our GDP on healthcare, whilst the average in other countries is 11-12% (WHO)

But I don't think I've EVER heard anyone ask a patient about waste. Can you ever remember seeing a panel debate on Sky, BBC, ITV or C4 news discussing healthcare that included an actual patient? Someone who uses the system and sees a different perspective? God forbid we should ask the people who actually have to use the system, what would they know?

Well, actually we know a lot. We see the medicines opened for just one dose, then thrown away. We see the extortionately expensive £1,000 bags of liquid feed thrown away because no-one thought to put them in the fridge, rendering them useless.

Recently, I watched a Netflix documentary about a brilliant brain surgeon who went to give a lecture in Kiev back in the 80s. He was so appalled at the lack of specialism and facilities, that every year since, he has returned to Kiev and carried out as many of the most complicated cases of brain surgery he can fit in.

He crams his suitcases with equipment and devices that just aren't available to ordinary people in Kiev, equipment that we would use once and throw away. He risks the wrath of the Russian authorities with every case he takes on. One mistake and he felt there was little doubt he'd go to jail. The doctor he works with in Kiev has already been suspended twice for helping him.

But there was a moment, when the doctor from Kiev showed the drill he used to get through skulls. It was an ordinary Bosch hardware drill and he explained that the drill bit was one the UK doctor had bought over TEN years ago and he'd been using it ever since. The UK doctor estimated that just on those drill bits alone, each one used once and then discarded, his hospital spent £40,000. That's one instrument of very many used by one surgeons every day, up and down the country.

A few days ago, I finally had the line fitted into my vein that they would feed me through. It is done in theatres under strict sterile conditions. The Dr inserting it mentioned that the scissors he was using were "one-use". They appeared to be very sturdy, stainless steel scissors, very similar to the ones you can buy for home haircutting. Even in the stores, these are expensive, around £12-£20. Anything bought through the NHS - perversely for an organisation with such huge procurement power - seems to cost 3 times more than the high street equivalent. He snipped through one sterile plastic line with them and that was that. They didn't even touch my body or blood.

So why do we do this? Surely things like scissors and drill bits and scalpels can be effectively sterilised to use again? Sure, we don't want surgeons using blunt scissors or drill bits but one-use???

We do it, because at some point, a very serious condition has been found to be transferred by re-using anything used in a sterile environment. The results may have been statistically imperceptible, perhaps just 2 or 3 cases in a million, but because of that, every last implement must be disposable. So, for instance, we might make sure that every single surgical pack used is thrown away after use, because 2 people were infected with CJD ("mad cow's disease") at the peak of the public interest over it. Even when we can be totally sure that whatever bacteria or virus causing a certain condition is killed under sterile cleaning, the chance that somehow just one scalpel or pair of scissors misses the bleach-bath means that we waste another few billion per year.

There have been several studies into how many "avoidable deaths" there are in the NHS every year. Results ranged from 10,000 to 40,000. The most recent was thought to be the most accurate, using the most detailed methodology and it put the figure at 12,000. The majority of those deaths were due to understaffing or under-resourcing. If we could save, say, even half of those lives for the sake of 2 or 3 aren't we peculiar not to?

Ethically, this might be a difficult question, but as a nation, are we prepared to accept risks many, many times smaller than, say, being hit by lightening twice or winning the lottery, to save many billions of our tax money from literally, being thrown away? And if that minuscule risk means that we take much, much smaller risks with lives in other areas by providing a better funded service to every member of the public rather than legislating for the exception rather than the rule, might the public choose to accept it?

Perhaps this isn't something the NHS or it's staff should decide. Perhaps we should have a public debate and allow everyone to have a say?

NHS managers are making difficult decisions every day as they try to cut vast sums from their budgets without affecting patient care. Perhaps very expensive cancer drugs that can only extend life rather than save it become unavailable, or patients are discharged to soon. If this measure could save many billions of pounds every year, should we not at least consider it?

Wednesday 24 September 2014

Hospital Logic Part 2 : Smoking

1. Ban smoking from all buildings. Because it's bad for you.

2. Ban smoking outside the hospital or anywhere in the grounds. Because it's bad for you.

3. Assue they will give up smoking during one of the most stressful times of their life.

4. Ensure already weak patients with dubious immunity have to walk as far as possible, leave the safety of the security staff and are exposed to all weathers and germ-ridden public. Because clearly, that is much better for them.

Tuesday 23 September 2014

A Well Run Hospital

From my recent posts and tweets, it's clear some of you are beginning to think I'm staying in a hospital from a Carry-On film without the wit.

However, there are a thousand different clues that tell you whether a hospital is well run or not and I truly do think this one IS well run. For all the faults and mistakes, I'm still convinced they are due to under-funding and under-staffing, not incompetence.

A patient-centered hospital listens to the little things and improves them. Each time you are admitted you notice details that used to frustrate you have been dealt with. I used to wait endlessly for the ward door to be unlocked when I went downstairs for a cigarette. Sometimes I honestly began to worry that I'd have to sleep outside in the corridor. This stay, it is always answered within 6 rings of the entry phone.

There are 2 large TV screens in the foyer. One announces "You told us..... (insert complaint) The other explains what they did to put the problem right.

Last stay, I used to feel quite intimidated if I had to take a lift with a male night worker on my own. Now, unless it's just coincidence, they step out if there's no-one else around.

I used to find some of the guys on the security desk a bit rude. Again, if I wanted to go out for a cigarette at night, I would have to press a button for them to release the door. Sometimes they just wouldn't bother and I'd wait outside indefinitely, although I could clearly see them sitting at the desk. One of them had a little power trip and wouldn't let me go out of the back door to the relative privacy of the taxi rank, but insisted I brave the onslaught of the very main road at the front of the hospital, always busy with passing drunks around about midnight. That has all stopped too. They no longer question me on who I am or where I'm going, which seems reasonable, as I always imagined with frustration that the pyjamas, wild hair and drip stands kind of gave my patient identity away.

Pain relief is an absolute priority here, unlike my old hospital. No matter how busy they are, I rarely wait for more than 15 minutes and it takes nearly that long to find another trained member of staff, find the keys to the controlled drug cupboard and draw it up.

If all goes wrong, the ward sisters (on the whole, apart from my unfortunate experience) are there to be patient advocates and I've often heard them tearing into pharmacy or an unfortunately hapless doctor on our behalf.

I suppose the point of writing this post is to say that if things are so bad for me here at a renowned teaching hospital with a very healthy focus on patient care and improvement, things will almost certainly be worse in most local hospitals around the country. In my experience, this kind of focus on patient care is quite rare. I have refused point blank to go to my local hospital for many, many, years now and have made 2 or 3 hour journeys vomiting all the way, just to avoid putting myself at their mercy.

I think it's too easy to blame poor management or lazy staff. If the staff don't appear lazy, they can't be. If the hospital seems well managed, it probably is.

But the NHS has been ordered to save £20 billion over the course of this parliament. Most people don't stop to think about how much money that actually is. It's 20 THOUSAND MILLION POUNDS!! There are only so many biscuits you can cut back on on the tea round. The NHS has never been adequately financed in the 25 years I've been an in-patient. The only time I've been on a fully staffed ward was in 2007 after 10 years of extra Blair money. It runs to the absolute bone. 20 thousand million pounds will affect care and outcomes, there's no way at all anyone can argue that it won't.

Monday 22 September 2014

Hospital Logic Part 1

I think I'll make this a series. If you pointed every logic-fail out to the nurses, you'd be talking forever.

So to kick off, Patient Rest Time :

1) Enforce a patient rest time between 1pm and 3pm. Switch off all the lights and close all of the blinds there and then. Even if everyone in the bay asks for them to be left open, do not allow this. Use whatever means necessary to assert your authority.

2) Once you're sure it's completely dark, deliver lunch.

3) Make sure that staff do not modify their behavior in any way and that all 20-30 are having to shout at once to hear one another in the corridor. In fact, this is also a good time to hash over last night's tequila related incidents.

4) Schedule all blood tests, physio sessions and dietitians between 1pm and 3pm

5) Remove lunch uneaten from those who actually managed to sleep through the cacophony.

Saturday 20 September 2014

So How do we Fix the NHS

If you want change, make sure this post goes viral and don't allow vested interests to stop you. The time for talking is over. The time to save the NHS is now. Don't close this post without being the change YOU need.

Following my post earlier on the disastrous understaffing of the NHS at the moment, many people have said to me "But what can we DO?"

Did you know anyone can walk into parliament and demand to see their MP? Whatever debate he or she is sitting in, they must be bought to you?

I would organize as many people as you possibly can in every constituency to turn up at your next MPs surgery and refuse to leave. Thousands of you. With every MP in the country under lock down, the issue would have to be solved and solved immediately.

Anyone who's MP doesn't even hold a local surgery, get up to Parliament (or ask a proxy to go in your place if you're housebound or find traveling impossible), call your MP to the lobby and do the same.

Organisations with good networks like unions, charities, voluntary groups and governing bodies could organize this within a week, the NHS could be safe within 2.

But I can't do everything. If you want this, do it, it's as simple as that. If you really want to save your NHS, get off the sofa and save it.

If you want this enough, send this post viral. RT it, share it, email it - even hand it out at your local supermarket - whatever it takes to spread the word.

All it takes is unity and will.

As dear old Nye said "The NHS will last as long as there are folk left with the will to fight for it."

NHS Meltdown

I really don't think I can put this off any longer. My very reason for being for the last 2 decades has been to expose and improve patient care, to truly show the general public what being a patient is really like.

But some of my longer term readers will remember all too vividly what happened the last time I dared to blow a whistle on my previous hospital. But they only know a fraction of what actually happened, as I was unable to write about it publicly for legal reasons. If I say it resulted in an attempt to threaten the custody of my children, you probably don't need to know the rest.

But I've always believed that fear is never, ever a reason not to do something. (Other than bungee jumping, obviously)

If I listed the catalogue of disasters I've experienced on this stay, this post would be 10 pages long. Possibly 20. So I'll focus on just one area - my nutrition. Just remember that if you think this is bad, every other area of care is equally under pressure.

I came in 18 days ago severely malnourished. My weight had dropped to just 39 kilos - 6 stone. I simply couldn't keep enough calories in before they escaped ferociously from one end or the other. The pain had become constant and intolerable and I could spend whole days vomiting over a bowl.

On admission, A&E set up a drip - my blood results showed I was dehydrated too - unsurprisingly. They put me nil by mouth overnight until my own doctors could assess me in the morning.

The fluids ran into me happily, running out the next morning. Despite constant queries, no new bag went up. For 12 hours. Then 24 hours. I couldn't even get anyone to flush the cannula. The sticker on it said "remove Friday", by Sunday, I couldn't even get anyone to do that and it was at stage 5 of a 6 stage infection scale. I took it out myself.

The first day, I obviously hadn't ordered any food and I tried absolutely every way I could think of to get some. But somehow, I never did. The next morning, still no menu slip and I was determined to get fed this time. I kept on and on until the lunch trolley actually arrived - with nothing for me. Cue meltdown number 1 and a miserable blub to the ward sister. Critically low weight and 48 hours with no food will do that.

The ward sister assured me I could get a "snack box" sent up anytime at all, I only had to say. I asked her why it was that hadn't happened so far, but she couldn't seem to answer.

Every single time I've been admitted at this weight, I've had to be fed into my central vein. (TPN) This time, no TPN materialised. When your bowels are in the kind of crisis mine are, you simply have no choice but to circumvent them. But there are a few catches. Firstly, TPN is eye-wateringly expensive - £1000 per bag, per day!! Secondly, you are at an extremely high risk of infection directly to your heart. No-one prescribes it for fun. But as I need surgery, I simply have to get a balance of nutrients beforehand or I'm unlikely to survive it.

A lovely dietician came and ordered me extra high calorie, low residue snacks to come up - smoothies, hi-cal jellies and mousses. But they never arrived. Today, 15 days later, I still haven't managed to track them down.

There used to be a special menu that people like me could order from with hi cal "extras" to supplement the hospital food. Despite asking and asking for it repeatedly day after day, that didn't appear either. I got a halal/kosher menu, but had to explain that wasn't quite what I meant. Again, 16 days later, it still hadn't appeared.

By the end of the second week, I'd LOST a kilo. A kilo I could ill afford to lose. The only reason I was dragged kicking and screaming into hospital at all was to avoid further weight loss.

I asked for extra salt & sugar sachets from the tea trolley to at least provide my own re-hydration fluid, (I'm extremely self sufficient and where there's a will, there's usually a way) But I couldn't get those either. I asked and asked when I might get TPN, but today, I still don't have it arranged.

By Monday evening I had reached my limits. Still dropping precious ounces, I believed I was safer at home. I walked out, got in a taxi, then a train, and just went home. They'd been promising me I could go home for a few days while I waited for my next procedure for over a week, but guess what? They somehow kept not getting round to confirming it.

I left at 6pm, and left a note to explain with another patient, as I didn't actually want to worry anyone or - God forbid - trigger any police searches. I asked her to give it to a nurse at the 10pm drug round, figuring it would be too late by then to do anything until the morning and I'd get at least 24 hours with my babies. I was all the way back in Sussex by taxi and train before anyone even realised I'd gone.

The landline finally rang at 10.30pm and it was the ward sister. Dave answered the phone as I was way too traumatised to deal with anything myself. She spent an incredible 15 MINUTES telling Dave off for my breach of protocol. She clearly kept interrupting him as he had to calmly repeat several times "Excuse me, I hadn't finished talking." At the end, he asked

"So you're the ward sister, is that right? In charge of my wife's ward?"

She said that was correct

"So in 15 minutes, you haven't asked me once about the wellbeing of your patient? You haven't asked me if she got here safely, or how. You haven't asked me if she has the meds she needs to get through the night, or if she's OK. And most importantly, you haven't asked me what pushed her to such extremes that she walked off your ward, something she's never done before in the 20 years I've know her?"

Funnily enough, she didn't seem to have an answer for that.

I called the doctors first thing in the morning to see when I needed to be back for my procedure (colonoscopy) They finally had a date for it (the Thursday afternoon, it was Tuesday morning) and told me I had to have nothing but clear fluids until then.

On the Wednesday, I dutifully returned in time to drink the 3 LITRES of highly unpleasant laxative you have to take the night before. The sister at admissions told me I could have been eating a light diet right up until then. I asked if there was any reason I couldn't eat something there and then and she said I could. (Another 24 hours of pointless lack of nutrition.) I speedily found a restaurant and ordered a piece of plain grilled fish.

By the Thursday afternoon at about 3.30, colonoscopy done, I was allowed to get back to the ward, and I was so hungry I  could think of nothing but food. I asked for one of the oh-so-elusive snack boxes, but the nurse said I had to wait for the supper trolley. (usually about 5-5.30pm) I was so exhausted from the endless battles (not to mention the king-size dose of sedative I'd had for the colonoscopy) that I just accepted it.

When the trolley arrived, I pointed out to the person serving that I didn't have an order in, as I'd been nil by mouth that morning. She told me I had to wait for everyone else to have their food and then they'd see what was left. I said anything but brown bread would be fine. Watching everyone get food was almost more than I could bear, but finally, I saw her coming back with a tray. It was a brown bread cheese sandwich.

Cue epic meltdown. I texted a friend who was in London and due to visit me a little later. Could he come now? I was starving, (literally) had no money and no cash card.

He got to me in less than an hour, let me cry for a full 5 minutes on his shoulder, took me for a hot meal and stocked me up with food I could keep by my bed. After he'd left, I found £20 he'd tucked into my teabag box, the one place he knew I would see it soonest. (I'm rarely more than an hour away from a cup of tea)

So the final question is, what has led to this catalogue of failure? Is it incompetence? Cruelty?

I don't believe it is. I have barely had a single nurse who wasn't competent and kind. There simply aren't enough of them. in the 20 years I've spent an average of a month of every year in hospital, I haven't experienced staffing levels this bad since 1995. They simply don't have the time to do all of the jobs they need to. To be more accurate, they don't even have time to get through the very basic tasks of ensuring patients have nutrition, fluids, cannula care and a referral to a doctor.

Remember, I'm in a specialist and admired teaching hospital with access to funding streams local hospitals don't have.

For the record, David Cameron needs to know that patients are at severe risk. Mistakes are inevitable and it's only a matter of time before our healthcare reaches crisis. Personally, I believe it has already. He has pushed a system that was already at its limits (and quite a long way beyond them) over the edge. Goodness knows what will happen when winter comes and admissions rise. 

There is no more time for talking, reviews, conferences and marches. If we want to save the NHS we have to do it TODAY. We must not take no for an answer. If we don't, it will soon be YOUR Mum, YOUR sister, YOUR child or grandson who suffers. Saying I told you so when it's too late, will be no consolation to me at all.