Friday, 9 February 2018

"Premium Patients" and the septuagenarian NHS: a rant by Julia Jones

My partner Francis has just emerged from a brief stay in hospital to have a hip replacement. It’s one of those blessed operations, like cataract surgery, that have become almost a rite of passage for us over-sixties. “Oh I’ve had three of those,” people say and one looks for the extra bulge that has turned them into a tripod. A successful hip replacement wipes out months of debilitating pain, sleeplessness, inability to walk up or down stairs without howling agony. Living in a country where such a major operation is relatively freely available is an absolute blessing. So thank you, fellow citizens, for continuing to fund our NHS, 70 this year ... and with aging problems of its own.

As we baby-boomers move through the system that is almost our coeval, we block beds, stretch resources and look likely to show our appreciation of our lifelong free-at-the-time-of-need health care by continuing to live longer and longer. (Sorry, everyone.) Francis was among the increasing number of NHS funded patients who are diverted into the private system for these “elective” operations. The NHS eye operations I had last year were described by one sassy young surgeon as my “lifestyle” choices – pandering to my self-indulgent wish to be able to continue to see, rather as Francis would greedily like to be able to walk, sit, lie down, sleep... (Sorry again?)

He had a well-equipped single room in this nice private hospital but we were put properly in our place by the visiting arrangements.  I wish I’d taken a photo of the notice in this hospital reception. Here’s the website version, copied verbatim.

NHS Patients

Lots of noise and groups of people can cause upset for some patients, as such we request that the following visiting hours be observed 2pm to 4pm and 6pm to 8pm.  We also ask that there are no more than two visitors at the bedside at any time and that all visitors report to the ward reception first, so that we can ensure visits do not disturb patient care.
Premium Care Patients
Friends and relatives are welcome to visit at any reasonable time of the day before 9pm.  We ask that all visitors report to the ward reception first, so that we can ensure visits do not disturb patient care.

Francis and I arrived just before 7 am on the morning of his operation and sneaked past the ward reception, which was empty. He'd been told that I was only “allowed” to drop him at the main entrance and then I should leave. “She can’t come down to the ward, you know.” But I came anyway and sat quietly in the corner of his single room, not upsetting anyone, I hoped, with my wild NHS-funded propensity to riot and to party. 

The first nurse who arrived asked Francis (quite correctly) if he minded talking in front of "this lady”. When he confirmed that this was okay she seemed pleased to let me learn how to help with the surgical stockings – this would after all be one of my duties for the next six weeks (though no one from the hospital had actually asked me if I was available and willing to do this). Next to drop in was the surgeon. Did he mind me being there?  He looked mildly surprised. “Not at all. It’s rather helpful. I need to be going through the issues of risk and consent again.” The anaesthetist was similarly friendly and I hoped that I justified my presence by mentioning how difficult the "intubation" had been when Francis had had a previous operation at this same hospital several years ago.  (There wasn’t anything recorded in his notes.)

Francis, of course, could have managed all of this alone (except for the stockings) but where was the harm in me keeping him company so early in the morning? Why the blatant unfriendliness of the phone call and the notices? Thousands of our contemporaries may be flooding though the healthcare system to have hip replacements but, for each of us the first time is an individual experience, in which we are likely to have invested great hopes, but about which we might well be privately scared.

And being scared has a practical impact. When Francis and other patients were in the recovery room later that day there was a man in great distress, trying to pull out his cannulas, shouting and crying, completely confused, needing the attention of several staff members to keep him restrained and safe. Perhaps he’d simply had "a bad trip" (as we might have said in our unregenerate 1960s and 1970s) more likely he had dementia. A blog on the Johns Campaign site this week confirms that many people living with dementia are unable to have their pre-booked operations when the day comes because they are already too frightened to be anaesthetised.  Many more people living with dementia, especially those having hip repairs, suffer post-operative delirium. Delirium is a hospital-stay-lengthener (bed-blocker!) and a patient-life-shortener (that's premature death, to you and me). .

People as old as I am (b 1954) can remember what was like waking up after an operation as a child without the reassurance of a parent present. An anaesthetist friend a little older than me can remember the difference it made to her job when parents were first involved to support their frightened children. She was one of the first professionals to support John’s Campaign as Nicci Gerrard and I attempt to ensure that our parents have the same opportunity for loving companionship through hospital admissions that they obtained for us so long ago. The hospital where Francis was being treated boasted two dedicated parent-child rooms but made no provision at all for patients with dementia.  Perhaps they assumed they wouldn’t have any? Yet, unless they were NHS cherry-picking (which their website strenuously denies) they should expect approximately 20% of their elective joint replacement patients to have at least mild cognitive impairment (MCI). In a hospital performing emergency surgery the % soars (it's up to 80% of the over 65s).

But let’s return to hospital as a place of rest and recuperation as well as treatment. My family make it a running joke that I only signed up for my four eye operations during 2016-2017 as an excuse to lie in bed and read – actually it was so I would still be able to read, which without the brilliance of the Moorfields surgeons who repaired macular holes in both eyes (yup, age-related once again) I would no longer be able to do. Closer to personal survival than “lifestyle” i m o.  This was day-case surgery; rest and recuperation took place at home. When I spent a week as an inpatient in my local hospital with a badly broken leg a few years ago, I waved away most offers of visits in order to keep up the three-book-a-day average that, for me, constitutes a perfect holiday. I’m sure my leg healed the better for it.

Francis entered this hospital with a nicely topped-up Kindle, a phone-full of audio books and the inclination and mental capacity to enjoy them.  Restricted visiting was not going to be a problem for him – apart from the implicit insult that we NHS types need corralling into 2 hour slots as we can’t be trusted to behave with proper consideration for others. In fact it was the hospital itself that consistently interrupted his rest: a bewildering procession of nurses, therapists, doctors, pharmacists and “hostesses” came in and out of his room, usually without introduction,  scarcely ever the same face twice and seemingly with little internal communication or access to his notes. Some knocked as they entered and closed the door behind them: others didn't. Nevertheless they were all of them essential and dedicated to the single aim of getting him fit enough to return home and crank up that Kindle whilst continuing with the exercise regime and trying to keep our relationship in good repair over the next six weeks as we struggle with those stockings. They succeeded and we’re happy – and yes, fellow citizens, we're very very grateful.

Yet what if Francis had been that poor chap shouting in the recovery room, what if he’d been one of the 1-in-5 who will already be living with MCI when the pain of arthritis urges them to consider a hip replacement? “People with cognitive impairment should receive the same standards of and access to healthcare as people without cognitive impairment.” (This is a quote from a draft document setting new standards in anaesthetics. I can't cite it as it's not yet published.) I believe access and provision need to be a little better than the norm for people with cognitive impairment. Dementia is a disability, like vision loss. Equality and human rights legislation surely require that special arrangements should be made for these citizens' access?

I did check whether an NHS patient with cognitive impairment could be upgraded to “premium” status in that private hospital -- and their family carers therefore entitled to visit  without restriction -- but no. Currently “open visiting” is  only related to the funding source not the individual need. I haven't named the hospital as I'm hoping, when their position is pointed out to them, that they will change. 

Meanwhile. here’s a bit of my favourite reading – probably not on your Kindle, though it probably should be: it's the NHS Constitution
The NHS belongs to the people.
It is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.
The NHS is founded on a common set of principles and values that bind together the communities and people it serves – patients and public – and the staff who work for it.
I know I've said this before but this is a document we should ALL read. Here are its principles: 


1. The NHS provides a comprehensive service, available to all
2. Access to NHS services is based on clinical need, not an individual’s ability to pay
3. The NHS aspires to the highest standards of excellence and professionalism
4. The patient will be at the heart of everything the NHS does
5. The NHS works across organisational boundaries
6. The NHS is committed to providing best value for taxpayers’ money
7. The NHS is accountable to the public, communities and patients that it serves
and its values: Working together for patients: Patients come first in everything we do. We fully involve patients, staff, families, carers, communities, and professionals inside and outside the NHS. We put the needs of patients and communities before organisational boundaries. 
Respect and dignity: We value every person – whether patient, their families or carers, or staff – as an individual, respect their aspirations and commitments in life, and seek to understand their priorities, needs, abilities and limits. 
Commitment to quality of care: We earn the trust placed in us by insisting on quality and striving to get the basics of quality of care – safety, effectiveness and patient experience – right every time. We encourage and welcome feedback from patients, families, carers, staff and the public.
Compassion: We ensure that compassion is central to the care we provide and respond with humanity and kindness to each person’s pain, distress, anxiety or need. We search for the things we can do, however small, to give comfort and relieve suffering. We find time for patients, their families and carers, as well as those we work alongside. We do not wait to be asked, because we care.
Improving lives: We strive to improve health and wellbeing and people’s experiences of the NHS. We cherish excellence and professionalism wherever we find it – in the everyday things that make people’s lives better.
Everyone counts: We maximise our resources for the benefit of the whole community, and make sure nobody is excluded, discriminated against or left behind. We accept that some people need more help, that difficult decisions have to be taken – and that when we waste resources we waste opportunities for others.
As the NHS gets older -- and so do we -- these principles and values matter to us all. 

13 comments:

JO said...

Oh these rules - and the way good, kind nurses can bend them. When my godmother was alive and I had a five-hour journey each way to visit her, the nurses happily let me in, knowing the difference it made to her.

And, during my stay last year, when I was ill enough to be disorientated, there was no problem with a daughter being with me, just to reassure me while my brain began to function again. And it was so helpful, having someone else there, listening to the same information and making sure we both understood.

julia jones said...

And I expect your daughter was glad to be there too. Thanks Jo

Bill Kirton said...

Thanks so much for this, Julia. Just before I read it, I'd posted a short comment on Facebook thanking people (and especially hospital staff) for their care and kindness over the past couple of months during my own hospital stay. We all need reminding (although it's sad that that should be the case) of the priceless amenity that is the NHS and we should grasp every opportunity (as you have for so long) to articulate its realities to counterbalance the ill-informed soundbites of those whose job it is to fund and protect it.

Susan Price said...

I am in complete agreement with you all about the NHS - and Julia, you were so right to stay with Francis and to ask for exceptions to be made for dementia patients... but, but, but.
There is another side to the hospital's demands that visitors behave themselves (though it shouldn't apply only to NHS patients.)
I have a young friend, probably in her early 30s now, who has had Crohn's disease all her life. This has varied from being mildly annoying to severe, painful, life-threatening illness. She was very ill during her mid-teens when the Crohns was so bad that a section of intestine had to be removed -- then there were complications. She spent a lot of time in hospital.

One day her mother came home from work to find her daughter - who was supposed to be miles away in a hospital bed - asleep on the sofa. Daughter had discharged herself and come home in a taxi. The reason? She was weak, exhausted and ill but unable to get a moment's peace or sleep in the hospital.

She was on a NHS children's ward where other child patients and child visitors were allowed to run up and down shrieking, play noisily with games, turn the tv up loud -- sometimes in the middle of the night. Beds were surrounded by gangs of picnicing families, all chattering loudly over the noise other visitors were making and tramping to and fro, letting heavy doors slam and generally making a constant din.

The nurses did nothing to keep order. As a result, my young friend (after a serious operation) was getting no rest. She had to discharge herself and leave hospital in order to recover.

So I think the notice should say something like: 'Family and visitors welcome at all times provided they recognise that this is a hospital where people are sick and are respectful of all patients' need for quiet and rest.'

Catherine Czerkawska said...

Good God, this shocked me to the core, Julia. 'Premium patients'? We should be out on the streets demonstrating at this notion. My husband had two hip replacements, a few months apart, last year - at our local, excellent Scottish NHS hospital. Both times, he was quite ill afterwards, the second time gravely ill. He had a rare reaction to the (local, spinal) anaesthetic. The treatment was beyond first class. He remembers, through the fog of pain and misery, the two or three young doctors on night duty working hard, but with care and kindness, for hours, to try to find out what was going on and to sort him out. The nurses were uniformly good. The place was spotlessly clean. Visiting was open between 2pm and 8pm although they asked that we avoid mealtimes. Often, when he was feeling at his worst, they were delighted to see me, because I could and did cheer him up. He was on a smallish ward, and because of some bed shortages, it was mixed at one point, but they were constantly aware of preserving dignity and privacy. Once he could eat it, he said the food was fine. Some ten days later, they HAD sorted him out and he was home, feeling much better - and with several weeks of injections rather than stockings, which a brilliant district nurse taught me how to administer myself. (You'd better be nice to her, he said, cheerfully.) But if he had been on his own, the local nurses would have popped in and done it. By the way - I hear our local private hospital has just closed down - too expensive, not used enough. God help the NHS if the kind of two tier outsourcing you experienced is allowed to continue and expanded.

julia jones said...

Dear Sue, I think your point is really good but the sentence I would particularly hightlightis "the nurses did nothing to keep order". I'm not picking this out as a criticism precisely but I DO think there's an important job to be done in giving nurses the confidence to MANAGE their wards and that includes reminding people of the rights of others, eg to rest. We have an absolutely brilliant video interview on the JC website with the chief nurses of Birmingham children's hospital (now rated outstanding) about getting the principles right and then approaching everything else as a management issue. The section where she describes their "quiet times" when the lower the lights and speak in hushed voices is absolutely compelling and one can easily imagine how easily families woudl learn that that's the way to behave at that time. She's successfully "managed" situations like when the leaders of two big bitter rival B ham gangs both had children in on the same ward and were insisting on their right to stay with them!

julia jones said...

And thanks for you comment Catherine -- it's fascinating seeing the differences between the NHS in the four countries of the UK. I've had some rather shocking stories form Scotland -- as you would get anywhere - but they have a more centralised system, a brilliant chief nurse and are moving towards "patient-centred" visiting throughout.
Glad you are as offended as I was!

Jan Needle said...

Like Sue, I agree with all of it in principle, and yet, and yet. In my main local hospital, where my daughter and her husband both worked as nurses for many years (and where, for her, the boot is now very much on the other foot, sadly, as you know Julia), the police are called into A and E almost nightly, and have a permanent presence there on Friday and Saturday evenings. Quite frequently the 'revellers' leave A and E and 'invade' the other wards, and once my daughter (a very slight young woman) cleared out a whole roomful of - what? Thugs? Idiots? - by the lucky fact of having been to school with most of them, and very good at shouting. Afterwards, with true nursely compassion, she merely said they were quite good lads, but a bit pissed. In one of her recent hospital stays, the visiting hours were very strict, and she was very glad of it.

Being in hospital is horrible in itself. It is getting worse. Nurses are flooding away from it. Nurses from abroad are a dying breed. Jeremy Hunt refused to be kicked out, and let's say thanks God - he mighr have been replaced by Gove or Grayling.

Whoops, sorry, Jul - I've replied to your rant with another rant, which wasn't my intention. I hope Francis is better soon, and I hope changing his stockings doesn't put you off him for life!

Jan Needle said...

I posted this before Julia's last two comments had appeared.

Sandra Horn said...

Oh how DARE they discriminate between NHS and 'premium' patients! I'm speechless with rage! The NHS will be paying them and I bet all their staff were trained in the NHS too - but that's almost beside the point.
That anyone can even think like that is appalling.
Rant over. I'm glad Frances is on the mend. x

Dennis Hamley said...

I'm a bit semi-detached from AE now so my comment will probably remain uneread. But your post fascinated me. I too have just had an extended stay in hospital. I was for a TAVI (transcatheter aortic valve implantion) on the NHS. I was slightly miffed to find this procedure counts as an elective. Does that mean that it's my choice whether to let my aortic valve close up and kill me?

It was due for December 4th, byt I had a bad cold and it had to be postponed. With all the recent talk of postponing electives, I was in despair, but thankfully, I was given a new appointment for January 14th.

This is normally a very safe operation. However, my femoral artery is not in as good a condition as it was twenty years ago. The op itself went perfectly: the new valve was implanted successfully and I also got an extra which I wasn't expecting - a pacemaker. But then came a piece of cruel luck. As the acatheter was being withdrawn from the artery, something snagged against the artery wall and I had a huge blood loss. The cardio-vascular surgical team had to come in for emergency surgery. They were brilliant, though it took them four hours to stop the blood and seal the artery - and a lot of other things as well, including collapsing a lung. Mercifully, it wll went well, though I was told afterwards that the outome was 50/50. I was unconscious for 24 hours and woke, not on Thursday afternoon as I at first presumed, but Friday evening, to find myself surrounded by family and doctors. Still, I woke up talking, which was a relief to evrybody. Theree was a fear that I might die, have a stroke or brain demage.

This meant I wouldn't be going home on Sunda after all. I had twelve more days in hospital, first in intensive care, then critical care and finally on the cardiac ward This was alarming because even on the cardiac ward I couldn't move much, couldn't walk and found even getting out of bed was a major effort - and as for getting back in... However, I was buoyed up with the memory that I'd had this before, in 1983, with the Harefield bypass. The care was marvellous. I cannot praise the nurses, the physios, the consultants who kept a watchful eye on us all and kept me fully up to date with everything they were doing. And the pharmacist, who explained the reasons behind every one of the beweildereing number of new pills I was givennoew pill I was given

The JR in Oxford is, I think, fortunate as an NHS hospoital because I spent all my ward time in a private room. I enjoyed the peace, but I also longed fo the company. The visiting hours were generous, though, and I had a good stream of family and friends visiting. My experience was entirely good, even though I couldnl wait to get out of the place!

Youn weould have thought that with everyone in a separate room, the place would be peaceful. Not so. There were paients who were really ill and in pain and others who seemed to resent being treated at all. All of them were noisy. especially at night. The night staff were unfailingly kind and courteous to me, but they showed the strain of having to deal with the difficult cases. Yet I was amazed by their attitudes of sympathetic stoicsm in the face of sometimes intense provocation which I don't think I could have put up with. Interestingly, I would say that two-thirds were from Europe and beynd. I'm glad I go through this now, and not two years hence.

Everything I experienced told me that the NHS principles are being fully maintained. I was looked after by professional, uttely competetent peopl. I've been home a month now and getting on well enough, thougnsom days are better than others, but it will be at least six morw weeks until i can claim to be as I was. But I'll get there.

Jan Needle said...

Brilliant tale, Dennis, thanks. Hope to see you before too long xxx

Lydia Bennet said...

I think 'elective' means it was planned in advance, Dennis, rather than being an emergency op. I've been following Francis' progress on fb and am v pleased to see him commenting on there with his usual wit and warmth. As for the NHS and the class/money divisions, our current govt are driving things against the former and for the latter with increasing boldness.