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. 

Friday, 19 September 2014

Hopefully, I'm wrong

Just want to put on the record now, before I go to bed that I'm desperately worried about a fellow bowel patient and have done all I can to get a Dr called to her. I've tried to persuade 3 nurses to call one, and I've asked a nursing assistant to look out for her in the night.

I believe she is dangerously obstructed, her pain is frighteningly noticeable on her face, she looks totally different to normal, and has been sleeping on and off all day. She's lost all interest in chatting or her knitting, she's lethargic and listless. Her abdomen is hard and so distended she looks 9 months pregnant. She's had no almost no (new) stoma input since surgery 18 days ago.

She told me her last scan of any kind, including x-ray was 7 days ago. She has had a very bad infection in her wound, needing constant redressing. (Started at least 10 days ago)

The ward is extremely short staffed and nurses are rushed off their feet, so stressed and unable to focus on one patient. Despite this, one of the nursing assistants is downstairs with a patient and has been there over 2 hours. I asked why she was there when other patients needed her so much, but she just went back to her phone while I was still talking.

I asked her too, to see if she could do what she could to make sure a Dr was called.

Thursday, 18 September 2014

Yes or NO? Scotland Decides

As the Scots go to the polling stations today to make the most important UK constitutional decision for centuries, I shall stay right out of the frenzy.

However, i'm not sure if I came up with the following idea myself or am plagiarising it unintentionally, but it seems to me, that in fact, we should just insist on independence for Westminster.

Why on earth don't we just cut them adrift to govern no-one but themselves? It's what we all seem to want after all. Scotland insists they have nothing against the English, Welsh and Irish, but everyone agrees that governance from Westminster is bad for them. Scotland, Wales, the North, Cornwall - even the Isle of Wight.

Westminster appears to be able to perform the impressive trick of being unable to govern effectively or fairly for anyone at all. Except perhaps the metropolitan elite of Chelsea or Kensington.

Can we not just leave them to it, devolve greed, incompetence and feudal servitude to them, so that the rest of us can get on with deciding our own futures?

Is ESA Really Harder to Claim than IB?

Last week, the excellent John Pring published an article that seemed to show that the new Employment and Support Allowance (ESA or "sickness benefit") was twice as easy to claim as the benefit it replaced (Incapacity Benefit or IB)

Under IB, just 32% of claims resulted in an award of benefit, yet latest figures show that 73% of clams result in an award of ESA.

Firstly, clearly ESA is not easier to claim than IB. firstly, the criteria are much stricter than the old IB criteria. Also, if it were easier to claim, the overall number of claims would have risen steadily since its introduction. When the benefit was introduced, around 2.5 million people claimed IB. Today, around 2.5 million receive support. So for all the pain and misery of the new Work Capability Assessments (WCAs) nothing at all has changed.

So what is happening? I've read several theories, but I don't think they've explained such an apparently dramatic rise.

We do know that Atos, the French IT company responsible for carrying out the assessments on behalf of the DWP have been struggling with increasing backlogs since the start. They have been forced to increase the number of assessments they do every month. At first, it was just 25,000 per month, at it's highest, Atos were doing around 130,000 per month. As the rate they were expected to assess people increased, backlogs increased with them until today, a whopping 700,000 are stuck in the "assessment phase". Once Atos walked away from the WCA contract (possibly last September, but only confirmed publicly this May) the assessment rate has dropped dramatically increasing backlogs still further.

The only way you can be found fit for work is through a face to face assessment. Only a fully trained doctor can decide a claimant qualifies on paper alone. This means that the evidence on a claimants form and the corresponding evidence from their own Drs makes the decision so clear cut that a decision can be made without the need for a face to face assessment. (WCA) Perhaps someone with cerebral palsy who cannot mobilise, feed or speak independently or someone with terminal cancer  Of around a thousand Atos HCPs (Health Care Professionals) very few are actually fully trained doctors. Most are nurses, physiotherapists or other healthcare professionals.

Thanks to HCPs who have been prepared to whistle-blow to me in private, I've known for over a year that Atos were attempting to clear backlogs by getting the trained Drs to do as many paper-assessments as they could. They were asked to work weekends and overtime and all Drs were pretty much flat out doing as many as they possibly could. A doctor can then decide that the claimant qualifies for either the long term Support Group or that they will be able to work again at some point in the future, hence qualifying for the Work Related Activity Group (WRAG) Remember, however obvious it may seem on paper that a claimant will not qualify, they cannot be found "fit for work" without a face to face assessment (WCA)

So for a long time, most decisions made have been those clear cut enough to qualify for ESA on paper evidence alone. Most of the "fit for work" decisions are stuck almost indefinitely in limbo.

If my theory is right and we ever get another provider willing to take on the poisoned chalice of ESA, (Which is looking increasingly unlikely by the day as time drags on) we will see a dramatic fall in the overall % of successful claims. However long that lasts, that won't be a clear indication of how many people get ESA compared to IB either. For a long time, there will be a disproportionate number of "Fit for Work" decisions as all the clear cut qualifying awards have already been weeded out. I wouldn't be at all surprised to see the current 73% success rate plummet to as low as 15-30%

So the real questions are when will the DWP find a new contractor and what are they doing about clearing the backlogs? Around 30,000 people will be compensated for unacceptable delays of up to a few months to their passport applications, when will the DWP compensate the 700,000 people facing unacceptable delays of up to a year to their very subsistence?

Sunday, 14 September 2014

How not to be a Doctor

When I read this article earlier in the week, I found it hard to believe that a doctor, in the UK in 2014 had actually put the words to paper. More so that anyone had given him the space to express them in public. First I checked that it wasn't an old article from the 40s or 50s. Then I checked it wasn't a spoof site.

But no. The author claims to be a currently practicing physician. It's hard to believe, in fact, that he isn't Iain Duncan-Smith in disguise.

Let's start with
"a common driver to ill health is the welfare state. In short, it appears that being sick has become a way of life and a career choice for a worryingly high percentage of the population."
A remarkably static 2.5 million people in the UK claim an out of work benefit due to sickness or disability. They are not the same people, rather people come on and off the benefit as conditions appear and subside. That's less than 3% of the population. Presumably our doctor author doesn't think ALL of them have simply adopted cancer or Parkinson's as a "career choice" meaning that less than 2% is a "worryingly high percentage" in his world. It may be best if we disregard any further maths related claims he makes.

He goes on to tell us that
"Two patients can have identical pathology but with striking differences in illness behavior."
Lets take a look at that shall we? Take one man in his mid 50s living in Surrey with diabetes. He has private healthcare, a comfortable home, a supportive family and can afford an excellent diet and membership to his local gym. His diabetes is under excellent control. Another man the same age with exactly the same pathology lives in Glasgow in poverty with no family or assets. He cannot afford to eat well and finds it very hard to exercise without support and encouragement. He becomes depressed and his diabetes is unstable and poorly controlled

Sadly, our doctor friend can only see the world through a medical prism, so none of those things matter. What's more, given his income, lifestyle and opportunities as a doctor, he is much more likely to identify with the first man than the second.

Now, I wouldn't want you to think that the good doctor is basing his judgements on anecdote alone. No, he refers to
"One informal survey of colleagues from around the UK placed the figure [of malingerers] at between 10% and 90%."
Phew, that's OK than. We have an "informal" survey with an 80% margin of error. I'd hate to think we were just making things up as we went along.

The next section of the article aims to make the case that we should return to a system in which the patient not only has no say in outcomes, but is actually not kept informed in any way. If a doctor has to show a patient the report he writes on their employability, he will apparently be too scared to be honest. Far better he should be able to write what he likes about the patient, whether accurate or not and the patient should have no opportunity to either see what is written or to confirm or deny it's accuracy. He is convinced we should return to the days of "doctor knows best" and clearly, he could never possibly be wrong. His opinion only affects the entire livelihood of the individual he judges, after all, why should they have a say?

He is certain that people do not complain because he or his colleagues ever get things wrong, but because they don't like their conclusions. Allowing a patient to see what he has written might cause them to disagree with him and that would never do. Clearly, the only reason they may ever disagree is because a comfortable life of luxury on a whopping £101 per week might slip from their grasp. He could never actually be wrong.

But the part that terrified me the most, the part where I stopped laughing at his archaic views and "quaint" paternalism, was in his 3 suggestions for improving the system of disability assessment at the end of the article. (Incidentally, he regularly conflates long term illness with disability, but I'm sure it was unintentional....)

His 2nd of 3 suggestions was that
"if a patient were wheelchair-bound but had full mental faculty then financial support would be provided to assist with mobility only if they were active in terms of work"
So let's say you have cerebral palsy or quadriplegia. In the world of our Dr Certainty, the only thing they need to get work is "full mental faculty". Whether they have constant infections or regular falls or seizures or uncontrollable limb spasms or any number of other related challenges to overcome is irrelevant. If they can think, they can work or they deserve to be prisoners in their own homes indefinitely.

Think about that a bit more. It also means that every one of those ppl he would consign to life of isolation and almost certainly great poverty, is able to get exactly the same education an able-bodied peer might get. Transport, access, and almost everything else in life most take for granted would have to be just the same for the person living with an impairment as for those who do not. It would have to take them the same amount of time to achieve comparable tasks. What's more, it would mean a society that never discriminates against employing a disabled person over someone without a disability, never allows disability discrimination in the workplace or place of learning, and that never indulges in hate crime or bullying. But Dr Certainty appears not to have thought of that.

So let's turn the Dr's own question back to him. How is it that 2 Drs with identical qualifications and clinical experience can come to totally different opinions of their patients? How is it that one can see the whole person, taking into account education, wealth, opportunity, mental state and family circumstance, while another can only see a diagnosis?

Perhaps if the DWP spent as much time weeding out judgmental, paternalistic, ignorant, potentially dangerous Drs as they do seeking mythical hoards of supposed benefit cheats, the health of the nation might improve dramatically.

Saturday, 13 September 2014

Fund Page for Plea for Help

You know, when I published my post, "Plea for Help" this morning (full text below), I ummed and ahhhhed over setting up a fund page. I have never, ever asked others for cash unless it was to save someone's life or keep myself campaigning.

On balance, I think we probably DO need to save a life and so have set up this page XXXX

Promise me that if you can't afford to donate, you won't. Sharing the link or offering other kinds of support is just as valuable if not more so. But people are often frustrated they don't live in the area to physically help and want other ways of showing support.

But the cold hard fact is she needs money. To save her home, improve her diet and offer her a little security, some breathing space for a while. She admitted that her biggest fears were financial.

You can   DONATE HERE by clicking on the bold text. 

Full text of original post : 

"Plea for Help

As most of you will know I'm in hospital. To be honest, I'm not really much different in hospital than I am at home, except my pain is better managed and I watch more reality TV.

But I can't do everything I can do at home.

A fierce welfare warrior and Spartaci in Wiltshire has hit rock bottom. She is dear to me and has been a kind of "wing-man" to me from day one. She chose the role of defender and has done it below the line both here and elsewhere for years. Wherever my writing is met with ignorance and especially when it is met with aggression she is there.

But now she needs to be defended. Her health has deteriorated to the point of being virtually totally housebound, she has no diagnosis and her home and family are under threat. I fear she is giving up. She may lose her income, her transport and even her son.

I need good people in Wiltshire to step up and take care of her for me. In almost every way. I need :

- A good social worker to help her get the care she needs
- A good welfare advocate to get her the support she needs
- A good caring, supportive GP
- A good friend or two to give her the love she needs.
- Even a good gardner to give her back her garden, one of the few things that gives her some joy.

If I physically could, I'd be in the car myself right now, but I can't and I have no idea when I might be able to.

I need people who will say "You know, I'd like to actually do something to help." I need people who will see her through this like I would. I need people who will be her strength and her hope and not let her down until she's safe. I need people who will practically help her and be there for her and lift her up. A number or two she can call won't fix this, she's too low.

If you have the time, will and skills she needs, please email me on

Believe me, if you're one of the many people out there worrying about me and sending so much goodwill and support, know that you can help me by doing this. I'm incredibly frustrated I can't do it myself and worried for her. You can lift that burden for me by lifting hers."