Monday 4 March 2013

NHS - You Can't Hide from This reality Dave

Finally. I'm writing something. On my blog.

It's been a long, long road. I've been stupidly unwell since....September? October? You all probably remember better than I do. Considering the failed operation at The Other Place last May, and the non-recovery that followed, I suppose we can probably say I've been stuck in bed with a sick bowl and a head full of opiates since about January 2012.

This is not "Sick Girl situation normal" for me when I get this bad. Things stop working. My legs stubbornly refuse to carry me about. My opiate infused bloodstream resolutely refuses to let me interact. With anyone. Can't cuddle my husband, can't speak to my kids and DEFINITELY can't pick up the phone. Not under any circumstances. It rings and my blood flushes cold with terror. I watch it, insistently bringing away on the duvet cover, jumping and twitching with pushy challenges and I let it ring out. Even when I knew my Dad was dying, I still couldn't pick up the phone. Friends visit and I beg Dave in tears not to let them in my room. The room that has become my world. The room that smells of sickness and sterility and decay. The four walls that contain me just as securely as any prison. The room that becomes more peppered with aids as the weeks go by. Suddenly a wheelchair here, a commode there, a sharps bin or six, as reality forces my ever constant stubbornness into submission.

And then hospital. When the spasms of vomiting ripped muscles, left me delirious with dehydration and malnutrition, when the pain shot through "Home-levels" of opiates it was time. Oh God that time. Time to say goodbye to my kids. Each time, with no idea if I'd see them again. Time to say goodbye to freedom and independence and comfort and love, such as they'd become in my narrow existence, in exchange for rigidity and institutionalisation and - if I was lucky - efficient salvation. If I was unlucky, judgement, frustration, pain and fear. Loneliness and battles with the very people supposed to care for me.

The first ward I was on (for four whole weeks) was great. My own room, views of London from picture windows that I could dream my way into for hours on end. Kind staff - indeed some beyond kind, some the angels we resolutely insist on believing make up 100% of of our NHS. Some became friends, which is the very highest accolade I can give. A few hiccups but never intentional. And all the while the chilling, horror-film-creeping realisation that The Other Place had not been right. The patient care had been bullying and cruel and dangerous for most of the 18 years I'd lived out my life in their "care".

I think the biggest change - and one I couldn't really get used to over the whole 10 weeks I spent in their care - was they didn't treat me like a junkie. they treated me like a person with a terrible illness in pain. I justified, and worried, hoped and waited needlessly. They came. Every time. With pain relief. When I needed it. No-one tried to take it away. Or reduce it.

The 2nd stay brought a dodgy sister. We didn't get on. It didn't go well. the ward lacked the compassion and calm of the previous one.

If the NHS let me down anywhere this time it was that good old chestnut - communication. The medics took 3 or 4 weeks to decide I needed surgery. They didn't read my notes or speak to anyone at The Other Place. They bought in the surgeons. Who took another 3 or 4 weeks to decide I needed surgery. They didn't read my notes or speak to anyone at The Other Place either. They couldn't get it together to communicate and push for an operation date. Xmas came and went, I got skinnier and skinnier. My boys started to forget who Mummy was. Just that pale, gaunt hologram of Mum lying in the bed for kisses goodnight. Like a Victorian father, remote and removed. My husband became my carer, never my lover. They became self sufficient as a family, without me. Something that gave relief and pain in equal measure.

Quietly and calmly I repeated, over and over again, "I need surgery", "I need surgery" like the insistent hum of train on tracks - unheard, but there, under all of the rest of the noise and beeps.

Finally in January, 5 stone 10, nearly, dead, unable to walk at all, having eaten or drunk nothing for about 2 weeks, the surgeon hung his head at my out patients appointment and said "I think it's an understatement to say we've left you too long."

He admitted me, set up a feed by central line, set a definite date for surgery and salvation was in sight.

Again, I was in a lovely ward. The nurses really cared but make no mistake - listen up Mr Cameron, Mr Hunt, Mr Lansley - THERE WERE NOT ENOUGH OF THEM. There's nowhere to hide. I'm not Polly Toynbee writing in the Guardian or Benedict Brogan in the Telegraph. I'M A PATIENT. Few will have my insight or experience.

Compared to 2007, wards (and let's not forget, this is in one of the best teaching hospitals in the country with a real emphasis on patient care) are horribly, dangerously and miserably short staffed. BECAUSE THEY CAN'T AFFORD TO PAY THEM MR CAMERON.

Oh, I've seen the political football nonsense you are all playing. The Express, Mr Hunt, they are trying to justify your ridiculous NHS sell off with stories of poor patient care. The Express and Mr O'Flynn rallying to the cause, talk of patients discharged with dehydration or malnutrition.

WELL LET'S NOT BE DELUDED. IT IS BECAUSE THEY ARE SHORT STAFFED. HOWEVER STRONG THE WILL, THERE SIMPLY AREN'T THE HOURS IN THE DAY TO DO EVERYTHING THAT NEEDS TO BE DONE. DO YOU UNDERSTAND MR CAMERON?? MR HUNT?

PEOPLE WILL DIE, IN EVER INCREASING NUMBERS BECAUSE YOU HAVE PUT OUR HOSPITALS IN AN IMPOSSIBLE POSITION. CUT STAFF, CUT RESOURCES, CUT CARE, CUT SERVICES OR GO UNDER.

Oh, you can go on about "cutting management waste" or "streamlining" but as you knew very well, we already had one of the most efficient health services in the world. You can hide behind your statistics, you can obfuscate about "no real term cuts" but you know as well as I do, the NHS needs 6% extra per year to survive. And it's not getting it. AND you're insisting they restructure from top to bottom at the same time.

So this is my experience, as a patient : Some of the deaths will be down to cruelty. Bad practice leads to bullying and cruelty. A ward or indeed a hospital, out of control, that has lost sight of the patients it is there to serve will kill people. Just as they did in Mid Staffs. But let's not kid ourselves any longer - it's happening up and down the country. Until we face this and accept we are only "angels" under the right circumstances, people will die. Lots of them. Our Mums and Dads and Sons and Daughters and Babies and Wives and Husbands will die. Say it again. They'll die. Needlessly and in lonely, desperate misery.

But more will die from cuts. And the trauma will be double. Because the staff who are left WILL care and will simply be unable to do the jobs of four or five. They will go home, every night, knowing they left a patient in pain. Knowing they left them hungry. Knowing they left them lying in their own filth or dehydrated or without vital feeds or medicines. Perhaps their blood slowly seeping away onto the floor, left for a night shift who fight all night, 2 staff short to save a life and never get a chance to staunch the flow. Dying quietly or dying dramatically, we'll all be dying.

Where there should have been 4 trained staff on every night - and several Healthcare Assistants, (HCAs) there were invariably 2 - and one HCA or none. They were usually bank nurses and just didn't have either the consistency or the care to do a good job.

The best nurses were staying 2, 3, 4 hours after every shift just to get things done.

Say what you like Mr Cameron and Mr Hunt, these deaths will be your fault. Every one will be on your conscience. Hide behind your statistics and your lies, but I'll be the patient, in the bed, watching the play unfold. I'll be the one talking to nurses in tears of frustration and exhaustion at 3 am. I'll be the one suffering in pain without a nurse available to bring my meds. I'll be the one watching the old lady opposite waste away because no-one has time to hold her cup.

But you won't need to use the NHS will you Mr Cameron? So you won't care. It's for "them" not "us" as remote and alien to you as pasties and council houses. But you used to didn't you Dave? You used to need the NHS? Because for acute, specialist care, they are the best. All of your private, boutique hospitals can't provide that care can they Dave? At 3am when your child stops breathing and you rush to salvation in a wail of blue lights and terror?

That you would so easily forget your own experiences and deny future parents the same excellence is your greatest shame of all.



If you don't want this ridiculous privatisation-through-stealth, please sign the 38 Degrees petition
https://secure.38degrees.org.uk/page/s/nhs-section-75#petition
Thanks




31 comments:

  1. Wow just wow, your back with a vengeance Sue.
    Our avenging Angel
    Watch out tory dems you failed to bump our Sue off
    XXXX

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  2. It is increasingly clear that this Government regard most of us as subhuman and not deserving of respect, care or support. They just don't care about those who will die in pain unnecessarily. Governments should be providing a safe, secure country for the people who voted for them, not this...Another cracking blog, Sue!

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  3. It's heart breaking and so true. Last year I was on a ward with 16 patients and ONE nurse and no other staff. They were supposed to have two nurses but one was off sick. Two of the patients on the ward were suffering with severe diarrhea and vomitting and she was running backwards and forwards with these sadly bed bound individuals' bedding and waste. The rest of us had to sit and wait for our meds. That nurse worked a 12 hour shift with no other support, no time to get any food, and I think she managed a toilet break once. She was running herself into the ground and several of us were in agony because she couldn't take time to give us our meds on time, let alone really check on us. She was in bits that she couldn't help us all and it wasn't that she didn't care, it was that she had no other support because they only had funding for two nurses on that ward, and one was sick. It's so very very wrong that the good nurses we have are becoming as abused as the patients because of these funding cuts. How long do we think these nurses will be able to cope working at those levels with the stress they are under, going home exhausted and heart broken. How many will decide to leave such a difficult job? Then what will be left with?

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    Replies
    1. Just spoken to my better half, who has just finished a 13hr, i'll repeat that, a 13hr shift on an acute infectious diseases ward. she had no breaks and had to deal with the death of a 35yr old patient with the help of 1 other nurse. I loathe what the Con-Dem-nation has made of my beloved NHS, for whom I worked for 30 yrs until my back gave out and turned me into a "scrounger"!

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  4. Thank you Sue.
    We all know nurses care, if they have the time to communicate, and time to know you are a person and not just a statistic!
    Managers work with figures, all numbers and "customers"......I hate the use of that word!
    Also, thank you for doing in this blog what we all think, but never seem able to "do".

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    Replies
    1. So right. Numbers and statistics. Clients and customers. The word is patients. As long as the Tory loons et al keep using client and customer instead of patients and making sure the number crunchers rule the NHS and not the folks who do the work and understand healthcare not managerial economic pan-gloss from a degree in some obscure BSA mode then there will be no hope for people who are ill.

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  5. Sue - brilliant - as the mother of a daughter whose life was cut short by the"other place" - She was never going to have a longlife, but it should have been longer and not in pain.

    It is so true Mid-staffs was not a one off. I still weep for Dani, but I also weep for all those to whom it will also happen - those that are not ill or whose time for use of the NHS has not yet come - it will not be there because those who do not need it now do not see the very imminent danger. I am told that it is unforgivable to criticise the NHS as all nurses are angels - I so wish that this was true.

    Sue I applaud your stamina. Thank you.

    Helga

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  6. stitched together - That is SO familiar. Day after day after day. And we know how long because all of this happened in the nineties - I was there then too.

    Slowly but surely the good guys left or had breakdowns and left or went to private work or other non ward health work with much lower stress levels.

    that left hospitals with nurses that frankly didn't care. the ones who didn't care they were leaving patients in pain or filth were the only ones who could bear to stay.

    It took years under Labour for that to start to fade. Training new nurses, bringing them in from abroad by the thousands, stamping out that culture that had been left to flourish of cruelty and lack of compassion, reminding staff that wasn't "normal".

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  7. It's so true and it's so wrong. My experiences have mostly been as an outpatient, but even there, appointments get pushed back week after week, month after month because the one person who covers my needs (and those of every person with those needs in the HCT) has gone sick and there's no replacement.

    I went two years without seeing a neurologist, I ahve gone two years now with no Epilepsy Nurse access. My CBT was recently pushed back a month while the therapist was unwell. Every time I get a letter from the hospital I take a breath to see if it's a cancellation. I haven't had a brain scan in 5 years. My neurologist (I have never seen one who specialises in epilepsy or seizures) discharged me because she thinks most of my seizures are non-epileptic and therefore need therapy. But they don't *know*. And I only got that far because I'm able to fight, to chase up and make phone calls, because I had (briefly) and epilepsy nurse who told me what my scan results meant. How are people who never had that chance or don't have the strength to fight supposed to get help?

    And why the hell should they have to fight at all?

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  8. The reality out there is far scarier than people imagine, this needs as wide an audience as possible.

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  9. Having recently been in hospital myself I agree that it is indeed a terribly sorry state of affairs. Playing devil's advocate though, I'd like to ask a question. Given that our country has been in economic decline for some years now and we do not even have the money to maintain the NHS in its current poor state, what other centrally funded government services would you cut in order to pump the additional £billions required to shore up the NHS?

    Whilst I am no lover of the tories, I strongly suspect that whichever party was in power at the moment would be forced to make cuts. The plain and simple truth is that as a nation we are practically bankrupt. We blindly continue to spend far more than we earn and there's only so much money we can borrow from the international money markets (our public debt is already nearly 75% of our GDP which is insane). This means standards of living and state funded care will unfortunately continue to deteriorate.

    It's a bitter pill for all of us to swallow.

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    Replies
    1. I wouldn't replace trident for a start.........
      Then.......I could go on, but will leave it at that:-)

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    2. I agree. But the Trident replacement budget is only £25billion. The NHS costs £100billion per year to run. Cancelling Trident only buys us 3 months NHS funding.

      So please go on...

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    3. Trident will probably cost more than £25 billion when other costs are taken into account. However the '3 months' thing is just misleading. We already have the £100 billion so the additional £25 billion could be spent just on improvements/additional staff. £1 billion a year (for 25 years) could help pay for a lot of extra staff.

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    4. Why do you cut the tax office staff when so much tax is avoided, missed, or hidden away.
      Why does council tax end at such a low figure? Surely it needs to be progressive all the way up the scale.
      I just find the direction things are going plain wrong. It needs thought, and a total rewrite. I am sure things could be done differently, yes and we might get some more nurses into the bargain!

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    5. Oh, I wrote this little bit and have now read on down and seen the wider debate.........
      :-)

      Delete
  10. I recently spent some time in A&E with Mum. Ill myself, caring for days had left me frazzled without patience. A&E was full. There must have been 3 nurses and two doctors. Everyone looked as if they were about to collapse as wave after wave of emergency ambulances arrived. And yet they treated a sick and confused 83 year old with unfailing patience.

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  11. ScoobyStoo - Where to start when your "reality" is so different to mine???

    We are not a "country in decline" - well, we weren't. Before the credit crunch our deficit was 3% - perfectly manageable and our 75% debt is way lower than most G8 countries - France and Italy are both over 100%. Think of a mortgage. 75% isn't that bad is it? but then it depends where you borrow the money from.

    75% of a house price from Wonga would cripple you in about a week it's true, but our debt is overwhelmingly held in the UK - we are not owned by China, we do not pay our debt interest to these mythical "money markets" waiting to slash us down if we deviate from austerity. The bank of England and UK investors own our debt.

    Interest rates are lower than they've ever been. If a government cannot borrow to invest and make a profit now, they ought to give up - damn, they could put it in saving's bonds and make a profit!!! (hypothetically obv ;)

    Under Labour, the NHS got it's 6% above standing still, and the world didn't collapse because of it. It collapsed because stupid financiers (NOT bankers alone) leveraged money they didn't have, then bet on the outcomes. (And even the futures of the outcomes)

    While Labour were investing 6% above maintenance budget, we enjoyed 2-3% growth every year, low inflation, low interest rates and improved public services. Crime fell year on year, health outcomes improved across the board, education improved - it wasn't perfect, but to believe we cannot maintain basic human rights is ludicrous. We're still the 6th wealthiest nation on earth. We have excellent prospects for recovery if those in charge would actually take their heads out of their bottoms and invest in things that make money.

    The ONLY way to get out of this pit is through jobs and growth. That's it - sure trident is pointless - that is no longer a leftie view, our tax loopholes are laughable, but none of that really matters if we don't invest.

    If we don't invest we die - the trick is making a profit and actually, Labour were rather good at it. The fact that British business failed to reward it's staff adequately year on year or re-invest their profits as German businesses do is the fault of NO government. That's just greed.

    Finally, we need healthcare, that's that, every nation does. If you look at every chart, the more private quota, the more expensive the system. With the US the most expensive in the world and the NHS one of the cheapest and most efficient. Whatever the answer, bringing in private businesses to run our healthcare is not the answer.

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  12. glad to see your back up to writing again sue
    this ones for you and with luck your get fully well and keep leading the fight against the welfare reform bill and save many lives

    http://www.youtube.com/watch?v=4pNQNcL6A50

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  13. there are good parts of many hospitals and on my many years of travels that has always been the case
    the john radcliff for example is excellent with Nero surgery but falls short on young children's heart surgery

    we as the consumer have to take responsibility to learn who's who and not just blindly leave to our local doctor however nice he or she may be

    we need to find our own set of expertize as it is all out their given the research that we need to do

    it would be nice to think that hospitals were equal and up to the mark but sadly as the queen will tell you that's never going to be the case

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  14. the bottom line is that the conservative government doesn't use the NHS neither does the queen and yet the government are in control of it how bizarre is that

    Where is the logic here? like most of the UK there is no logic or common sense in anything we do and all that does is to create a sad and twisted society

    care you cant learn you either can care from a very young age or you cant and all the money in the world wont make a blind bit of difference

    overseas nurses are very good at caring overall the only downside is that their medical knowledge can be lacking at times the same with overseas doctors

    once you get to a surgeons level then things look up a little the only downside here I've noticed is that they can stray in to areas of an operation and shouldn't as they need to be mentored and by straying off in to the unknown brings a risk to the patient's life. A little extra care here would prove beneficial

    the other major downside into most hospitals is that the chief executive and his or her staff lack the ability to engage with not only the staff but also the patients as well making the work you do in a hospital as being unimportant which leads to an overall lower standards of care for all concerned

    can this be changed ? no the standards will continue to fall as the young graduates going into the profession lack the ability to stand up and be counted and to fight for a better overall standard from the chief executive who in reality couldn't give a damn

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  15. I couldn't agree more. My mother did die. They killed her, with neglect and cruelty. And we still can't get anyone to listen.

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  16. Hi Sue - Thanks for your reply. Here's my take on things.

    >We are not a "country in decline" - well, we weren't. >Before the credit crunch our deficit was 3% - perfectly >manageable and our 75% debt is way lower than most G8 >countries - France and Italy are both over 100%.

    Continually running a deficit of 3% is completely unsustainable and tantamount to economic suicide. Britain already owes £1.3TRILLION and is borrowing over £2billion per week. Servicing our debt costs the country over £40billion every year. That's bigger than the budget for any government department other than Education and Health. France and Italy are also in it up to their necks but that doesn't make our situation any better.

    >75% of a house price from Wonga would cripple you in >about a week it's true, but our debt is overwhelmingly >held in the UK - we are not owned by China, we do not pay >our debt interest to these mythical "money markets" >waiting to slash us down if we deviate from austerity. >The bank of England and UK investors own our debt.

    About 30% of our debt is held by overseas investors. You are right that we are not "owned by China" but don't discount the importance of these investors. They are the largest group of buyers and we'd be in real trouble if they stopped buying our gilts.

    I'm afraid the money markets are not mythical either. The Debt Management Office turns to them each and every day to manage our finances.

    >Interest rates are lower than they've ever been. If a >government cannot borrow to invest and make a profit now, >they ought to give up - damn, they could put it in >saving's bonds and make a profit!!! (hypothetically obv ;)

    Haha. If only eh?

    On this we agree though, investment is the only way forward. Personally, I think infrastructure projects are too big a gamble. Governments are demonstrably hopeless at predicting future requirements and kicking off multi-billion projects that won't deliver for decades (such as the ludicrous HS2) for the sake of artificially creating jobs. The only smart way to invest for the national future is in education. Give the kids of today the skills to meet whatever the global economic requirements will be in 10 years’ time.

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  17. Cont...

    >Under Labour, the NHS got it's 6% above standing still, >and the world didn't collapse because of it. It collapsed >because stupid financiers (NOT bankers alone) leveraged >money they didn't have, then bet on the outcomes. (And >even the futures of the outcomes)

    Exactly, the bubble collapsed for the same underlying reason all economic bubbles have collapsed; An end to the prevailing supply of cheap credit. Look at any bubble in history and they all boil down to the same root cause.

    >While Labour were investing 6% above maintenance budget, >we enjoyed 2-3% growth every year, low inflation, low >interest rates and improved public services. Crime fell >year on year, health outcomes improved across the board, >education improved - it wasn't perfect, but to believe we >cannot maintain basic human rights is ludicrous. We're >still the 6th wealthiest nation on earth. We have >excellent prospects for recovery if those in charge would >actually take their heads out of their bottoms and invest >in things that make money.

    On this we disagree. Labour were only able to invest +6% between 1998 and 2009 because a global bubble was in effect for the majority of this time. Alistair Darling understood the situation in 2009 only too well. In the 2009 Pre-Budget Report he stated that if Labour were to win the next election he would cut NHS funding to in line with inflation. You are comparing apples with oranges. No government is going to be able to maintain the level of services provided during boom years whilst in a recession.

    >The ONLY way to get out of this pit is through jobs and >growth. That's it - sure trident is pointless - that is >no longer a leftie view, our tax loopholes are laughable, >but none of that really matters if we don't invest.

    Yep, yep and yep.

    >If we don't invest we die - the trick is making a profit >and actually, Labour were rather good at it. The fact >that British business failed to reward it's staff >adequately year on year or re-invest their profits as >German businesses do is the fault of NO government. >That's just greed.

    Hmmm, well, there's a very good case to be made that Gordon Brown was largely responsible for the severity of the crash in the UK. Whilst Chancellor he very unwisely decided take responsibility for regulating the banks off the Bank Of England (who knew what they were doing) and set up the FSA (who didn't have a clue). The FSA was a joke in The City from day one. It was supposed to be independent but was actually financed by the banks themselves and so had no real power. Brown happily oversaw the final deregulation of the banks (that had been started by Thatcher in the 80s). He didn't care what the consequences might be as the deregulation meant London became the financial capital of the world. Investment banks moved their operations here by the boat load to benefit from our incredibly lax regime. As a result in poured the corporate tax revenues, funding in part the increased spending on services to which you allude. If I remember correctly they climbed to around 15% of the entire national tax take at the peak of the lunacy. Understandably, nobody wanted to end the party and Gordon let the good times roll.

    I have no political affiliation. Having worked in Westminster some time ago I know that pretty much all career politicians suffer from the same chronic failings as each other. However, to simplify the situation as 'under Labour things were good and under the Tories things are bad' is a gross misrepresentation of the facts.

    Agree about the Germans though. They have a very resilient and long term mind-set. Something that the Chinese share with them.

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  18. Cont...(again)

    >Finally, we need healthcare, that's that, every nation >does. If you look at every chart, the more private quota, >the more expensive the system. With the US the most >expensive in the world and the NHS one of the cheapest >and most efficient. Whatever the answer, bringing in >private businesses to run our healthcare is not the >answer.

    One of the keys measures of the success of any society is how it cares for its ill. Whilst the NHS is one of the most efficient healthcare systems in the world it still has serious shortcomings, some of which you have highlighted in your blog. Like you, I have grave reservations about the way profitable treatment areas are currently being farmed out to the private sector. However, I don't see a financially viable way in which the NHS can continue to exist in its current form.

    Anyway, I don't want to hijack this blog posting any further. Have neded up writing something of an essay I'm afraid. However, you raised some interesting points which I wanted to address.

    I wish you all the best in your battle with Crohn's.

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    Replies
    1. I rather like your replies and debate ScoobyStoo. You're challenging and thoughtful. In rather more healthful times, I'd happily swamp the thread.

      Delete
  19. So glad to see you back and fighting, but sad that you have to fight at all.

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