NHS? No thankyou

Losing someone very close to you is terribly difficult at the best of times. It is made even harder when they are very sick for some time before. So, is it really necessary for things to be made even harder by medical staff? It was not until my father in law was hospitalised some weeks ago that we did, indeed, come to learn just what that word overstretched actually meant. For my husband and his family it literally meant the over stretching of their nerves and an abundance of stress right up to the moment their father died. It made me wonder how many other people are suffering this literally as I write this. We could not fault the nurses who were caring and considerate or the doctors who were obviously stressed and probably as those wonderful words express, over stretched. But the system is what let us and my father-in-law down. Red tape, forms and an abundance of incompetence.
For us it began when ‘Bud’ (my lovely father-in-law) entered hospital. He had kidney failure and was admitted to a renal ward. We were allowed to visit whenever we liked and the first thing to perturb me was the fact that he was always in bed when he was quite capable of sitting up. The curtains were always drawn, even on the most beautiful summer’s day. Does being over stretched mean that nurses cannot pull back curtains and brighten a patient’s day with a bit of sunshine? We would find him in bed every visit and often asleep. Come to think of it I imagine I would have been inclined to sleep if my room was in darkness and I was in bed. The few times we did find him in a chair we took him outside in a wheelchair. As the weeks went on he seemed to be more and more docile when we arrived for the visits and we became concerned why this was. On one occasion we arrived to find he had been moved. Bud seemed unable to give us an explanation for this, so we inquired and were told that he had an infection and needed to be isolated. We then presumed his sleeping was due to the drugs as no one gave us any clear answers. Our fears began that if we did not get him removed from there he would develop further infections. This spurred my husband, Andrew and his brother and sister on to get him out as soon as possible. However, this was to be more difficult than it sounds. My mother-in-law had had a breakdown and felt she could not possibly continue taking on the responsibility of helping her husband with his dialysis. He was not capable of doing it himself anymore. At eighty seven, he made mistakes and often forgot to perform important tasks relevant to his dialysis. We had a big problem. So began the journey of daily dealings with the system. It all seemed so simple. We would arrange for carers to come to the house and take care of all that was needed. Then we encountered the first issue, that of cost. It was not possible to sell their house as my mother-in-law still lived there. So began the filling in of forms and more forms and of course more forms to get the financial help needed. Only to learn that we were unlikely to be eligible for financial help as my in-laws owned their own home. This felt like something of a penalization but the battle commenced. Meanwhile, Bud seemed to be slowly going downhill and mostly slept through the whole of our visit. The plan to have carers at home seemed very unlikely especially as we would need them to be experienced in giving dialysis. Then, the idea of getting him into a nursing home seemed a possibility especially as they said they would get one of their nurses trained in dialysis. Mother-in-law seemed happy with selling the house and moving somewhere smaller and the owner of the home was happy to take part payment for father-in-laws stay until such time the house was sold. Then, there were more forms and we were told that he was likely eligible for funding but we would lose it if we took him out of hospital before the decision was made.

Lovely Bud

I cannot even begin to explain how Occupational health works and social services but It seems sufficient to say that they seem to make it as difficult as humanly possible and my sister-in-law seemed at the end of her tether some days. Meanwhile, Bud had gone a little downhill and when speaking to my husband the doctors suggested in the nicest possible way, of course, that maybe dialysis should be stopped!! We were appalled. This was five weeks before he died and I hasten to add it was not of renal failure either. His family made it quite clear this was not an option. The man on his good days was sitting up in bed joking with us and they suggested pulling the plug. It is still deeply offensive to us that this was even mentioned by anyone. The battle to get him home continued. We told the hospital that we had a place for him and we were then told that occupational health and social services, at least I think it was that way round, would fast track everything. As far as I know, it got done and finally came together to be put in place on the night of the morning he died! Finally, the wait became so agonising that Andrew, normally not known to show stress, slowly began to reveal the signs. By this time, his father who had entered hospital slightly unwell was now very unwell and the thing we had dreaded finally happened. He caught a chest infection. Again the doctors said it would be best to stop dialysis and that the doctor would talk to him about it. A stranger would talk to Bud about ending his life? My husband said no! If anyone would ask his dad how he felt about that it would be him and if he should choose to continue treatment then he had every right to do so. The drive down to the hospital that day was torture. I could almost hear Andrew’s mind whirring with what he would say to his father. Luckily, he never had to. They had taken blood tests which had showed his kidneys were functioning reasonably well on their own now that he was less active. He could come home without any worry about who would do his dialysis. Except, of course, it was never going to be that simple was it? There was the bed to organise. We had to get a full time nurse. The time for a carer was now past. Bud was at a stage where he needed full time nursing. So, began the phoning around again. Then, Bud took a turn for the worst and we rushed to the hospital. They said he was close to dying. Bud rallied round and stayed with us. It was now a rapid race to get everything in place to get him home. Not back home to get well but back home to die. Hospitals it seems do not always make you better.
We hired the most wonderful nurse and I think we will all thank whoever it is you thank every day of our lives that we found her. Bud came home at last. There the story ends you think. No, sadly it doesn’t. Our lovely nurse, who we will simply call J, worked well over her hours, staying up until late because the Marie Curie nurses it seemed could not make it. Or they seemed to be coming and then did not. Most nights a member of family stayed with him as by this time he could not be left alone at night. Bud was only home five days before he died. We did not hire another nurse for night time as we were assured Marie Curie nurses would come. In total 30 different district nurses visited in the space of four days. Bud never saw the same one twice. If we had not had J, I think Bud would have been terrified by all the different faces. The stress on everyone was overwhelming. The morning he died, J was excellent as were the district nurses who came in to certify the death. I think I would have felt fine about how the district nurses handled everything if the district nurse had not come up to us and said in a rehearsed voice.
‘I’m sorry for your loss.’ Five words I heard her repeat several times before she left. I can’t help wondering if the minister for health is also sorry for our loss. It was not the nurses fault. It is how she is trained. But I could not help wondering how many times she has said that in the past month to other bereaved families. Maybe the NHS did not actually kill him but they sure as hell did very little to prevent it, so maybe they should be sorry for our loss.

‘Glowing in the dark’

Why is it whenever I go to the hospital nothing goes according to plan? Yesterday, I left work to attend my eleven a.m. appointment with promises of ‘I won’t be long’ and ‘I’ll make up the hours.’ Ten minutes later, after a leisurely drive I arrive at the hospital twenty minutes early. I can’t believe my luck, there is a parking space right outside the Endocrine clinic. With much reluctance, I push a £1 coin into the ticket machine. Don’t you just hate paying for the privilege of being told your blood pressure is up and your thyroid is still crap? Still, I tell myself a pound, is not that bad for 45 mins. The things I tell myself, I ask you. I stroll up to the desk and approach the receptionist who gives me a mean look.
‘I have an appointment at eleven o clock,’ I say forcing a smile.
‘Name?’ She barks and holds out her hand for my appointment card, which of course I have forgotten.
Determined not to be intimidated I pull my Blackberry from my bag and point it at her like a gun.
‘I have a text with the appointment time.’ I say with an attempt at being assertive.
That throws her and she backs down.
‘Your Doctor’s name?’ She barks again.
‘Frankenstein,’ I mutter but she doesn’t hear me.
‘Has your situation changed since your last visit?’
Which situation would that be? I wonder. What an awful question. Don’t you just feel so embarrassed that nothing in your life has changed in six months? I shake my head miserably in answer to her question.
‘Take a seat, someone will call you.’
I debate reading one of their magazines but after scrutinising the patient who put the Hello magazine back, I change my mind. Anyway I am on time so will probably go in soon. Ah, as if on cue, I am called. I am taken into a small room to have my blood pressure taken.
‘This is your first visit?’ Asks the nurse.
I am already on the weighing scales and rolling up my sleeve. I mean, do I look like a virgin?
‘Far from it,’ I say trying not to be too facetious.
‘Oh, the receptionist seems to think this is your first visit.’
Good lord I forget my appointment letter and everything goes tits up it seems. My blood pressure is up and I swallow two beta blockers and am sent back outside to wait for the consultant to call me. I wait and I wait and I wait and I wait. Everyone who was there when I arrived has gone. I have been there an hour and my parking ticket is about to expire. I feel my blood pressure rising. I approach the desk and enquire when I can expect to be seen not expecting this simple question to cause such confusion.
‘Name?’
My god, has she forgotten it already. I tell her again and she studies her computer screen.
‘What time was your appointment?’
I feel myself shudder at the word was.
‘Eleven,’ I repeat.
Five minutes later and she tells me that she has found me on the system and I am informed that I will be next. I wander outside and push a £2 coin into the machine. I walk back inside feeling like I have just been mugged.
I wait and I wait. I have now been there two hours. I still have to make up my time at work. I feel a headache brewing. Are hospitals there to make you sick? Is this how they drum up business?
Finally, I am called in. It is now 12.30.
‘So ve are having the radio iodine treatment again yes,’ asks the consultant checking my pulse.
I nod.
‘Ve give you, double dose this time.’ Says my German, Swedish, Hungarian, well she’s not English, put it that way,consultant.
‘Double dose,’ I stutter, ‘Is that safe?’
‘Every zing is doubled,’ she nods emphatically not actually saying if it is safe or not.
I try to absorb the everything is doubled concept.
‘So the time I need off work is…
‘Doubled,’ she repeats. ‘Before was 5 days, now every zing double, so off work for 12 days.’
I debate telling her that her figures do not seem right but she is squeezing my throat, in a nice way you understand.
‘I sleep separately from my husband for?’ I ask in a strangled voice.
‘Double, every zing double, you sleep apart for 12 days, no social life for 27 days. This time you are double radioactive. Ve make sure it work.’
Kill or cure huh? I open my mouth and then close it again deciding I do not have the time to argue. My thyroid and I really have not been getting along, so the sooner it goes the better. So, in two weeks’ time I am to come back and swallow a radioactive capsule. I am to be anti-social for 27 days but at the end I have the pleasure of becoming under active. Yes, well, you may not find it exciting but for me it is worth the anti-social behaviour. Thank god for Facebook is all I can say…social interaction with every zing safe.

My five days as a radioactive Leper (read if you dare)

I went to see my endocrine consultant in a confident mood. So confident in fact that I took my book to read in the waiting room. I knew we were having trouble getting my hyperactive thyroid under control and that radio iodine was something we were going to discuss, and that even the possibility of booking an appointment do the dirty deed was, I knew, on the cards. But, well, I don’t have to tell you about the NHS. I was confident because I was well aware the appointment would be months away. In fact, let us be honest, it was more likely to be years away. In fact, let’s be even more honest, the chances of my still being alive when they offer me the treatment is very unlikely. So, I wander in, even more confidently after having just been weighed and told I have lost a few more pounds while on my diet. I felt surprisingly good after that. Even if they do say it will be twenty years before we can destroy your thyroid Mrs Renham Cook, I don’t think I will mind too much. I had lost more weight and better still my blood pressure was lower. Do I care about a thyroid problem?
‘So, ve vink ve coming to the radioiodine treatment. For your better health, you understand me, this is your only chance. It be danger for you othervise.’ My German/Polish/Slovakian/ Eastern European,(well she isn’t English, that much I can tell you) consultant tells me. I nod, not fully understanding whether the treatment is not good for my health or not having it is not good for my health. She pushes a form towards me.
‘You fill zis in please,’ she is beginning to sound more like the Gestapo with each passing minute.
I fill in the form and feel my heart beat a little faster. My god, surely they are not going to do it now. I mean, I have come alone. Doesn’t someone need to accompany me home? Surely there is a waiting list a thousand miles long sitting around somewhere of which to the bottom of, I should surely go.
‘So, ve now get you to see Joan and book you in for next monday, zis is good.’
Next Monday! The next Monday of this month! The next Monday of this year! The next Monday of my life in fact.
‘But, I can’t possibly,’ I splutter, ‘We are short-staffed at work.’
She looks unperturbed.
‘Zees appointments very hard to get. verk vill understand.’
Oh, she has much to learn.
Oh, my god. I am sent back to the waiting room where I quake whilst waiting to see Joan, who is very nice and explains everything in full, albeit it very quickly.
‘You swallow a capsule and then you are radioactive. All the radio iodine will go to your thyroid to destroy it but there will elements lingering in the body which will come out in your urine and sweat. Do not sleep with your husband for 5 days, take 5 days off work and do not get closer than 1 metre to others. After the 5th day you can be a bit more relaxed but still avoid pregnant woman and babies. We will see you in a week.’
I leave in a state of shock. For the next seven days I spend my time googling Radio iodine treatment and discussing it with my husband. By the time I go the following week we feel we have the whole thing sussed. He will sleep in another room. I have separated our towels and what not. I buy a new toothbrush on the way and wonder how it will feel being apart from my husband at night, already we have arranged to sit on separate couches. I am very nervous when I arrive at the hospital and yet all I am going to do is swallow a pill. I mean, let’s face it I am the worst hypochondriac in the world, second to Woody Allen and popping pills is a way of life for me. Ok, I don’t spend my life popping radioactive ones admittedly. But, trust me, Ozzy Ozbourne has nothing on me. I am taken into a small room and everything is read out to me and I am asked to sign a form to say I understand that I must legally carry a yellow card around with me stating I am radioactive and also wear a yellow wrist bracelet should I have an accident. This means the paramedics will be aware. I get more nervous as she clips the bracelet on. I suddenly feel like an alien. Will the paramedics walk away from my dying body when they see the bracelet? Will the bracelet hinder the saving of my life? What am I letting myself in for?
‘Ok, you can take the capsule.’ annouces Joan.
I am led silently to a table where a large vial sits waiting for me.Suddenly I feel like I have stepped into the ‘Frankenstein’ novel. I am like someone being taken to their execution.
‘Only you can do it,’ she prods.
Oh, I see. Only I take responsibility for radio activating myself. I suddenly feel like I am in a sci-fi movie and expect lots of bubbly froth to accompany my capsule. I lift the vial from its container and everyone jumps back. I hesitate and then lift it to my lips and in one movement the capsule is sliding down my throat.
‘Ok,’ they say ushering me out and standing ten miles from me. ‘You are radioactive now.’
I walk out of the building expecting everyone to look differently at me. Surely it shows on my face that I am radioactive, or maybe something shines about my head, you know like a halo. Well, I imagine it does that all the time anyway, with all the good works I do, but listen, I don’t want to brag.
I wait to feel different. I climb into my car and wait. It doesn’t start itself, so I turn the key in the ignition and wait for an electric shock or something. It doesn’t happen. I drive home, checking myself every few minutes for new symptoms, nothing happens. Well, this is a piece of cake, I tell myself. Now, let this be a warning to you. Never tell yourself something is a piece of cake. The next five days are awful. I cannot make Bendy (our cat) understand that I do still love him but I just can’t have him near me. The more I try to avoid him, the more he pushes himself onto me. I spend my time going ‘Shoo shoo’ Till, in the end he shoos away to the neighbour’s house. Andrew sits on another couch and avoids touching me and I begin to feel like a leper. I still feel the same. Nothing remarkable happens in the house and I feel almost disappointed. I think I had expected all kinds of amazing things to take place during those five days. The only remarkable thing that takes place is the staggering amount of washing I do. I phone Andrew on the intercom to say goodnight and ‘I love you’. I am beginning to understand what it feels like to be in a long distance relationship.
Then the five days are up. I didn’t conjure up strange men from another planet. I got a few odd looks when people saw my wrist band. Andrew joked it was like a new baby’s wrist band and I was a born again nutcase. So, I got through it. I now had to wait for the next stage. Blood tests in a few weeks and the likelihood that I would become under active. What they didn’t tell me was that it would be a bad idea to get a cold. What do I do? Yes, catch a cold. Two weeks on and I feel like I am being strangled on a daily basis. I phone the hospital and they pass the buck to my doctor, he listens and passes the buck back to them. Meanwhile, I am in agony. Ok, hypochondriac agony which is probably fifty per cent less than it sounds. A piece of cake? I couldn’t eat one if I tried. It seems a cold inflames the glands more. I mean, it can only happen to me.
So, they tell me to take plenty of pain killers (yes permission at last to take drugs) drink plenty of fluids and wait. Back to google to check they have got it right this time.