Dear Ms Anna Dugdale,
I was admitted to your hospital last Sunday afternoon via ambulance – severely dehydrated, with acute abdominal pain, vomiting and sedated with morphine. Partly as a result of the previous 24 hours which is not your concern. What happened thereafter IS your concern, and you should be concerned. I had had the wit to bring a bottle of water with me after my previous night’s experience and was drinking copiously. The ambulance crew duly debriefed a nurse as to the problem. I also gratefully accepted their offer of more morphine through what was apparently ‘their’ canula’. I was wheeled into a corridor and provided with a sick bowl.
I had no expectation of being seen quickly, I am aware of the pressure that A & E are under and indeed was rather resentful that I was further exasperating the problem. I knew I needn’t have been there. A powerfully built woman in polo shirt and casual trousers arrived and folding her arms positioned herself the other side of the corridor staring at the wall. She looked furious. Obviously not a patient, and hopefully not a nurse. She looked like a security guard. Indeed she was.
I hadn’t given any indication that I might cause trouble, I am a 67-year-old pensioner with a terminal illness, so was curious why she was standing over me. ‘Are you guarding me’ I inquired, hoping to lighten the atmosphere. ‘We have to stand here if there’s anyone in the corridor’ she replied in a most surly manner. ‘To stop anyone stealing me, or to stop me stealing anything?’ I asked, a weak attempt at humour. ‘Both!’ came the answer. Charming! Thus was my introduction to the tender loving care of the Norwich and Norfolk.
I don’t know how long I stayed there; I woke to find myself being wheeled into one of 12 bays. I assume, since I had been alone in the corridor that I was patient no 13. Dr Carrington Karambasha came to see me. You have an absolute star there – that man will go far. If there are any repercussions as a result of my revealing what he told me – I will defend him to the hilt, and this letter will be published to ensure that if I am not around it remains as testament to the fact that he is, in my opinion, everything a Doctor should be. He puts caring for his patient above every other consideration. Including his own career path. That may not fit with the NHS’s idea of the perfect Doctor, but it sure as Hell fits with a patient’s viewpoint.
An hour and a half after I saw Dr Karambasha, and he had ordered blood tests, admission, and pain relief – I hadn’t seen a soul; I was still marooned in my curtained world, gasping for a drink. I couldn’t reach the buzzer – on a shelf behind me and I had been fastened into a high sided cot. I managed to reach over far enough to just grab the curtain with the tip of my fingers and gradually ease it backwards an inch at a time. Eventually I revealed a foot of the outside world – just in time to see Dr Karambasha’s smiling face walking past.
‘Hello! Are you feeling better?’ he said. ‘Not really, nothing’s happened yet!’ I replied. He looked shocked. He said ‘That is completely unacceptable, that shouldn’t be happening’. He rushed away and returned minutes later, furiously pushing a metal trolley in front of him. He proceeded to (first time!) find a vein (more than anyone else had done!) and take the blood tests himself. As he labelled the various bottles, he told me that the reason I had been left unattended was that the nurse – who had never seen me – had ‘decided’ that since I was a cancer patient, ‘I would be difficult to bleed’ and that therefore she wouldn’t try. However, she hadn’t imparted that information to him. He repeated that it was unacceptable and wrong. I truly thank him for his honesty, it was reassuring and I felt in safe hands. I repeat, if there are any repercussions for his honesty, I will be there to speak up for him. He was right.
At some point, I was transferred to your Acute Medical Ward.
At 6am the following morning, I was told I was now ‘Nil by Mouth’ since I was possibly going to have an endoscopy. Eventually Mr Phillips arrived and examined me. He concurred that this was an obstructed bowl or possibly twisted, that an endoscopy wasn’t required but I would stay for 24 hours to see ‘if everything settled down’ and in the meantime to have a ‘light diet’. I was given lunch of macaroni cheese, raw red cabbage and lettuce and cucumber.
I am not a dietician. I know now that the last three items were probably the worst thing I could have eaten for a bowel obstruction. They are high fibre. Needless to say, I was once again in profound pain and sick. More morphine. Despite now being hooked up to a saline drip I was so dehydrated that I couldn’t even curl my lips to snarl at anyone, much as I wanted to. A saline drip that had required an agency nurse from another ward to hook up to my central line since no one else knew how to do it, incidentally. She wasn’t exactly friendly either.
I was transferred to Cringleford Ward. Actually I hitched up my overnight bag and walked, pushing the drip trolley in front of me. I am a bloody minded woman and I knew that walking would do me more good than anything by that stage. I’m not a Doctor either, but I could see what was happening to me – I had a blocked drain somewhere between the second and third floor – and the care I was receiving amounted to little more than pouring quick drying cement down the plug hole on the top floor. My new internal plumbing was clogging up more effectively than Lagos harbour circa 1980.
I have no criticism of the Doctors – who knows whether, like Dr Karambasha, they had asked for something else to be done and nobody had taken any notice of them? The morphine arrived every time I woke up. I have no criticism of the regular nursing staff, they were continuing to do what was on my notes. In particular, I have no criticism of the auxiliary staff – they may not have a fancy degree to their name or a career path to the higher echelons of the NHS, but in terms of looking after their patients, they leave the rest of your staff standing. As for your ‘agency’ ward sisters – I fancy the wards would run a lot more smoothly without them.
Monday came and went, as did Tuesday, in a haze of morphine. I made the decision not to eat anything further until someone had seen me and decided what was wrong. No one else apparently noticed. Auxiliary nurses found me a protein milk shake, everyone else contented themselves that they were following orders. I still hadn’t seen anyone but was advised that I was on the ‘list’ for an urgent scan.
By Tuesday night I was seriously frightened. It had occurred to me that I was dying – ‘within months’ as predicted by the oncologist. I wasn’t frightened of dying, but I wanted to die at home. I asked to see the night sister. I asked her bluntly whether I was dying. It will be a matter of record in my notes. She said ‘not that she was aware of’ and consulted her notes. She told me that if I was dying it would say ‘TLC’ – tender loving care – in my notes; and it didn’t. She asked why I thought I was – I explained that for four days I had been staring at ceilings, in pain, dehydrated, being fed morphine every few hours and nothing else apart from allusions to my ‘terminal status’ and that it occurred to me that I was now the proverbial pensioner pushed into a side room, fed morphine and left to die quietly and if that was so, I would appreciate being given the chance to call my husband and go home. She made contact with the palliative care team for me.
At 4.30am on the Wednesday morning, yes that was 4.30am, not pm, I was finally seen by a surgeon. Whether he was up late or up early I know not. He had managed to catch up with the x-rays from the James Padgett hospital on the Saturday. He told me that I had scar tissue from the previous five operations and in his opinion and in light of my terminal status, it would be counter productive to operate. I concur. I am not totally obstructed, and if there is another way of resolving the problem, then that must be better. At 4.30 in the morning I neglected to make a note of his name. He advised that the problem be controlled by diet and attempting to dissolve the blockage orally. In other words, keep eating, a low fibre diet, and the dreaded Movicol.
At every meal time, I requested ‘what is the low fibre option’, and was given the allegedly suitable options. Unfortunately, your external caterers, SERCO, appear to be of the opinion that LF is the catering code for ‘low fibre’. It wasn’t until Thursday I was given a menu card and was able to see for myself that what I was eating was the ‘low-fat’ option. I wasn’t trying to lose weight – although I have lost 2 1/2 kilos whilst in your care. The code for ‘low fibre’ is LR. I can’t even blame the caterers, though given a menu earlier I would have been able to protect myself earlier – for unbeknown to me, there was a sign on the outside of my door that still read ‘Light diet’ – the instruction from Monday. It had never been changed, so SERCO were not to know that I required an LR option and nothing else – especially not the fruit you wheel round the ward these days. Five a day is positively damaging to me at the moment.
When I was finally given a menu and pointed out to SERCO that I should only have been having the LR option, I received the immortal reply – ‘that’s why we give you a menu’. Aha! so we patients can protect ourselves and not rely on communication between your staff? Got it. Not a lot of use if we don’t get the menu til four days later. What happens if the patient has dementia and doesn’t understand that they need to take care of themselves whilst in your establishment? What happens when they are too weak to walk to the door and check the signs? Who do they complain to? I couldn’t even find out which consultant I was under – no it wasn’t on the board you pin-up in front of each bed, nor was it in my notes (I asked several times). No one seemed to know who was taking responsibility for me. I couldn’t ask whoever it was – ‘cos they never came to see me. I had fallen into the gap between Mr Phillips and the surgical team – whatever their name was.
That evening, the ‘agency’ sister came and announced that she had been told to give me an enema. I’m only the patient, I didn’t know that this was a ‘pre-surgery’ (which I now wasn’t going to have) emergency version of enema for those about to undergo bowel surgery. I thought it was just a common or garden enema, never pleasant at the best of times, but if that is what the Doctor’s ordered, who am I to argue? She told me to remove all clothing on my lower half, administered it and vanished. Some 20 minutes later I took myself off to the loo in some trepidation.
Voila! There was no loo paper – something I had had no reason to notice for the previous four days! I could scarcely trot off in search of a nurse semi-naked. I rang the emergency buzzer. Just as well, for the last thing I remember was overwhelming pain. The next thing was lying on the floor, bare arse in the air, surrounded by three auxiliary nurses, a sister, and right at the back, grinning – grinning! – helplessly was the agency nurse. I note you scored highly on your recent inspection for ‘patient dignity’ – not from me you don’t. I couldn’t tell you what happened, only that I had passed out, for how long, I have no idea, however long it takes them to answer a buzzer. Someone pushed a syringe of morphine into my mouth, and Vanessa, one of your auxiliaries, bless her, had the strength to get me to my feet and they half-carried me back to bed. My blood pressure, previously commendable, had gone through the roof.
I am not surprised there was no loo paper – no-one to my knowledge, and I saw the cleaners on the ward every day, had ever so much as opened that bathroom door. The bin was emptied, the sink in the room wiped – but not even the handle of the bathroom got a cursory wipe – in a Gastro ward? Madness! I note that I was tested for MRSA to see if I was bringing it into your magnificent empire – will I have taken it out with me?
Thursday was even more interesting. I had been told I could go home as soon as I had ‘had a bowel movement’ – I had most definitely had that. Later that day, I even had the ‘urgent’ scan that had been ordered two days previously, which confirmed that I had partial blockage of scar tissue. During the day, the Palliative care team that I had phoned from the bedside, came to see me. I pointedly asked whether they could take control of what was going on. Indeed they could – and did. They were magnificent. They struck out most of the medication, fitted me with a pain patch instead of the morphine, refilled the water jug (.75 of a litre once a day is not sufficient for normal healthy person – get bigger jugs if you’re not going to bother refilling them!) and changed the anti-emetic drugs for ones which weren’t dehydrating. They actually examined me to see what was going on. Good heavens. They changed the sign outside the door. They arranged for a dietician to come and see me and give me advice for going home. They told me I should never have had that type of enema – ‘something’ phosphate. I only remember the word phosphate for surely that is what dynamite is made from?
My husband arrived to take me home – we were just waiting for the Doctor to ‘sign me out’. I waited and waited. 9am. 12pm. 3pm. 6pm. 9pm. No one came. Finally at 9.20 pm Dr Andreas arrived. He looked half dead on his feet poor man. Bleary-eyed, unshaven. The pharmacy was closed for the day. The agency nurse didn’t know how to work the computer programme for discharge. He didn’t know. Between them they managed to get the paperwork semi-sorted. NO medication. No request for Primary care action. I scarpered as fast as my legs would carry me.
The next day the GP refused to give me the prescribed medication because ‘the hospital should have done it’ and ‘nobody’s told the Doctor’. I called the palliative care team again. ‘Don’t worry, we’ll sort it’ they said. They did. Within the hour they rang back to say that everything was waiting for me at the GPs surgery if my husband could just drive back there. When he returned, he walked me round the block in the sunshine. Guess what was waiting for me on my return? A district nurse, ordered by the agency nurse, expecting to give me an enema! The paperwork had arrived with her that morning. She was, shall we say, a tad surprised, though pleased for me, to find me on my feet, walking arm in arm with my husband.
So far, I have occupied five paramedics, two ambulances, three different consultants, a bed in your establishment for five days, and been scared so witless I would never set foot in there again as in an-patient – no matter what the future holds. I cannot begin to imagine the cost to the ‘overstretched NHS’. You, in turn, have a magnificent building, as impressive as a stately home, manicured gardens, art exhibitions, five restaurants and a clothes shop. I understand it cost in excess of a billion pounds. You must be very proud as you walk visiting dignitaries around. I understand you are reported as saying you ‘wouldn’t want your Mother’ admitted there. I don’t blame you.
It is not the fault of individual Doctors and Nurses that I became even more ill in your care. It is not lack of money – to wit the expansive building and grounds. Somehow that money is not being translated into what should be your core function – caring for frail or elderly patients. (I haven’t even mentioned my routine scan carried out in a portakabin on the back of a lorry in your car park) How do you manage to have space for a Muslim prayer room, but not a PET scanner? Why is the external scanning company fined if they do not report results to the hospital within 40 hours – yet it takes two to three weeks for that report to make its way through to my consultant? The problem seems to be that everyone is too scared to escalate a problem, preferring to just do what protocol demands – and there is a total lack of communication between various departments.
Imagine my surprise to return home to the BBC headline news that ‘morale was low’ and communication between departments non-existent in a ‘bullying culture’ – in A & E, the Acute Medical Unit, and the cancer treatment at your hospital. Precisely the three departments of which I write.
A ‘hospital whistleblower’ apparently. Well, here’s a patient whistle-blower to back him/her up…
I count myself lucky that I’m here to write this letter. I have been engaged in a battle to stay alive for three years now – for the past week it has felt as though you are the enemy rather than my supportive ally.
I shall be publishing this letter. I shall be publishing your reply.
Part One of this post is available here.