Saturday, 20 September 2014

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. 


  1. I feel for you I really do Sue. So many people have no understanding of what goes on in hospital when you have life threatening conditions. I could tell so much - but the reliving makes it very upsetting. As you walked out of hospital ( if you don't sign your own discharge they are still responsible for you) I wrote this:

  2. So the only thing that has changed is that it has all become worse. :(

  3. OMG Sue - That is so dreadful I am sat in tears reading this. I pray that something will be done to make things better for you. I wish they woudl treat you and ALL patients with the care and respect we ALL deserve when we are in hospital and vulneable.

    - The NHS needs to be saved - Not privatized or anything - If we put 1p on tax then that is fine - We ALL need to save OUR NHS -

  4. Aww sue what an ordeal .... yet still you fight on for others... xxx

  5. Suggestion: Call your consultant's office and leave a message.

  6. i know only to well myself what it's like in hospital sue and your spot on

    The only odd thing i find is if i go to the east Surrey hospital i get treated like dirt but if i go to the princess royal in Haywards heath i get treated like royalty you can never tell in an emergency where the ambulance will take you

    my favourite hospital thou and has been for the past 40 years is st marks hospital

    although the staff have changed throughout that period the level of care offered to me has always been of the highest order and long may that continue

  7. Hi Sue, Finding it incredible that you are so literate on the subject of health care today in comparison with the past. As an expert patient myself I was wondering if you have access to the corridors of power in Westminster. I think your experiences & care should be heralded from Big Ben .

  8. Glad you wrote this Sue. Thanks ;)

    If anyone's interested, I had my own NHS problem a few weeks ago...

  9. My heart aches for your suffering Sue but I feel completely at a loss to do anything physically possible from this distance, other than as you have spread the story as wide as posible amongst my FB Groups...which I have just done...I would certainly email your local MP if you think it will do any good???
    God Bless Sue and know many many friends on here wish you strength and hope right now..

  10. Oh Sue! I read this post with horror. You said you didn't think your experience was due to incompetence or cruelty, but you were left to starve and gain an infection through sheer neglect. There's no other word for it.

    It's despicable that hospital care has become so poor. I dread the day I ever have to be admitted. I don't know how we reverse this situation. Lobbying MPs doesn't seem to achieve anything. They're only interested in lining their own pockets. The system is corrupt and the vulnerable people in our society are suffering because of it.

    I'm devastated that Scotland didn't gain independence. I was eager to see the changes we could make on our own, away from the influence of Westminster. I hoped for a better future. Now it looks bleaker than ever.

    I'm sorry for your troubles. I wish you well xx

  11. Oh sue how distressing, I have been in tears reading this, both for you and for me as it bought back horrific memories for me too also at a famous London hospital. Once I formally complained after an inpatient stay I was immediately removed from my consultants list and refused any further treatment despite my being seriously ill and no other specialist to care for me. Hugs xx

  12. So very sorry to hear about your terrible ordeal, Sue, but I am not surprised and approaching David Cameron won't help. They want to run down 'the terrible NHS' so that their friends can rush in and 'rescue' (for that read privatise) the NHS. It's been their mission all along to turn it into a US style system. My uncle in his 80s had a terrible time in privately run places in US when he had his colostomy and had to keep asking the insurance to approve extra days for his rehab. Hugs xx

  13. Sue, this is terrible. But you are being far too kind to them, it IS incompetence and cruelty. There is no way this should be happening to any patient let alone someone in such a condition as yourself. The nurses do not care or they would have sorted it out. It is not difficult, it is a complete lack of will. Best wishes and hope you manage to get a proper apology from them.

  14. This is reassuring in a perverse way, Sue. I've been blogging about crap like this since 2011, and from the responses I was starting to think I was being singled out for special treatment (you know the highlights from Twitter). Clearly I'm not.

    My last admission - August - was the first time that a serious attempt on my life - from sheer, mind-numbing, incompetence - wasn't made. Prior to that, every time I was admitted from early 2011 on, someone tried to kill me. And yes, folks, I do mean that literally - they actually did try.