08 January, 2013

One visitor, once a week and no children – how expectations have changed.

Hardly a day goes by in the UK without the state of our hospitals and issues concerning the National Health Service being front page news. This weekend, for example, the Health Minister, Jeremy Hunt has announced that hospital managers and administrators will be sacked if they fail to provide the best patient care. For much of the past year or so there has been a continuing political debate at all  levels about changes that the government proposes to make in how the Health Service is organised, funded and run. We have almost weekly exposures of particular problems – poor care, lack of funding, financial mismanagement and waste, medical errors, anomalies of provision in different areas of the country, inequalities of access amongst different age groups and so the list goes on. There are clearly issues that need to be continually addressed and improvements that need to be made but at the same time it seems to me vital not to miss the point – that the National Health Service is a most wonderful thing and something that we should all be very proud of.
Dickens, drawn at the time, giving
one of his readings

This was brought home to me last week when I read that at the beginning of 1858 Charles Dickens became President of the Great Ormond Street Children’s Hospital Appeal and on February 9th of that year he read his great book “A Christmas Carol” to an assembled audience of social reformers and potential donors. Before the reading he gave what is often regarded as one of his greatest and most powerful speeches about the social conditions of his time. The whole, very long, speech is recorded The Nursing Record of that time. In it he told of an experience he had had whilst on one of his many – almost daily - night time walks around London’s poorest areas:

“There  lay, in an  old egg-box, which the  mother had  begged  from a shop, a little feeble, wasted,  wan,  sick  child.  With  his  little  wasted face,  and  his  little  hot  worn  hands folded over  his breast,  and  his little  bright  attentive  eyes,  I  can see him  now looking  steadily  at  us.  There  he  lay in  his  little frail box,  which was not at all a bad  emblem of the little body,  from  which  he  was  slowly  parting, - there  he lay  quite  quiet,  quite  patient,  saying  never a word.  He  seldom cried,  the  mother  said;  he seldom  complained;  he  lay  there  seeming  to  wonder what it  was about.  “God  knows” I thought, as I stood  looking  at  him,  he  had  his  reasons  for wondering- how  it  could possibly come  to  be  that  he  lay there,  left  alone, feeble  and full of pain......... There  he  lay  looking  at us, saying  in  his   silence,  more  pathetically  than  I have ever  heard  anything  said by  any  orator  in alI my  life,  “Will  you please  to  tell  me  what  this means,  strange  man?  and  if  you  can  give me any good  reason  why  I should  be  so  soon  so   far advanced  upon  my  way  to  Him  who  said that children  were  to  come  into  His presence,  and were not to  be  forbidden,  but  who  scarcely  meant,  I think,  that  they should  come  by  this  hard  road by which 1 am  travelling..........”

Today, Great Ormond Street is still providing care for very sick children – not only from this country but, when necessary, all over the world. What began with only 10 beds in the early 1850s is now one of the world’s foremost  hospitals.  And as I read Dickens’ words I reflected upon a number of things. Certainly, how pleased Dickens would be that for the most part the conditions that he described are long gone. He would be amazed if he could walk around a modern hospital – especially Great Ormond Street - and witness the vast amounts of money, care, expertise and support that is freely available and at the disposal of the hospital and thence the patients. At the same time, I have no doubt that Dickens’ eye for injustice, anomaly and hypocrisy would, even today, soon spot weaknesses, unfairness or inequalities in the system.
Great Ormond Street today

Just before Christmas an MP Ann Clwyd complained, bitterly and publicly, of the treatment that her terminally ill husband had received in his final days. He was, she said, “treated like a battery hen” and called into question many issues in relation to the quality of basic nursing, care and compassion. Her comments, both then and since have received much coverage, and have sparked off a debate about the quality of nursing and care. I’m sure that Mrs Clwyd had a very valid point to make – indeed, there have been instances in the past few years when I have had similar concerns myself when my father and mother in law were in hospital. But it was also good to read a timely reminder in the Guardian a couple of days later when a lady wrote a very long and impassioned letter to the paper extolling the wonderful nursing, care, love and compassion that her young son had received in hospital over a very long period as he battled against a potentially fatal illness. Coincidentally, the hospital was Great Ormond Street but her comments, I’m sure, would have been equally true of any other hospital – she was praising the NHS not a specific hospital. She ended her letter by listing all the people – nurses, doctors, admin staff, cleaners, carers, porters and many others who had played a part and to whom she was very grateful. It was a very long list and went a long way, I felt, to redressing the balance and keeping things in some kind of perspective.
The NHS lauded in the Olympics Opening Ceremony 2012

As anyone who lives in the UK will know the National Health Service is something which politicians meddle with at their peril. Whatever its shortcoming – and I am sure that there are many – it is perhaps the one facet of national life most valued by the electorate. Indeed, the use of the NHS in the Olympic opening ceremony a few months ago was met with great public approval and pride – it clearly set the Service as very much a jewel in the crown of British daily life.  Because it is so valued and crucial both metaphorically and politically to the life of the heartbeat of the nation it also engenders strong feelings of support – and sometimes criticism  when things are perceived to be not right. Add to that the fact that it deals with highly charged matters of individual and public concern –  matters of life and death – and it is surely a recipe for strongly held opinions. On the one hand when your child gets better after a life threatening illness and a stay in hospital and the nurses are rightly regarded as “guardian angels” by relieved family and friends. But when your terminally ill father dies a lingering death born of old age then nurses can easily be seen as callous and uncaring – they didn’t, it can appear, make him better or make his painful exit from the world manifestly less distressing when you, the relative, wanted it to be.

This is the problem, amongst many others, that the NHS faces – differences in perspective and expectation. I have absolutely no doubt that even if the NHS were funded to the hilt, even if it was awash with the world’s most wonderful staff, even if it could cure the most threatening of diseases in the blink of an eye – it would, and could, never satisfy expectations. In Dickens’ time to have a health service of the kind we have today would have been unimaginable. Dickens and his peers  really would have thought they were in paradise. Indeed, even in my life time things have changed so much – and not just the curing of illness – important though that is.
The hospital where I lay as  four year old - and the lawn on
 which my mother stood and waved. I was in a bed near one of
the ground floor windows. The hospital had previously been
 the local workhouse - something Dickens would  have
known and maybe found worthy of comment! 
I have some little reminders of that in my box of family “heirlooms”. I have a post card posted on 28th Feb 1949 – I was four then and the NHS was in its infancy. It was sent to my mother from the local hospital to tell her that I would be ready to leave hospital on 1st March at 10 am. I had been in hospital suffering from scarlet fever – a common complaint at the time. It was highly infectious and I was allowed no visitors – my memory is of my mother standing outside the window on the hospital lawn waving to me as I sat up in my bed. She often said that she was never allowed to set foot inside the hospital because of the infectious nature of the illness. I was in the hospital for almost a month. The wording on the postcard is clear – be there at 10 am - no negotiation, no consideration about whether it was convenient or whether my mother was able to do this, no other information of what to bring or to expect. Any hospital today that took this line would be subject to massive criticism and accused of callousness and lack of consideration for the needs of people. Times have changed.
The permits and instructions my mother recieved
And the other memento – a little visiting card from 1954.  My grandfather was in hospital – he died soon afterwards – and the card is a permit (notice the wording) for ONE person to visit him – at a designated time once a week. My mother (she is named on the card – could see her failing father on Wednesday 3rd April between 2.30 and 3.30 pm. No other visitors were allowed, no children. There were only four visiting times per week – Wednesday, Thursday, Saturday and Sunday – and you were allocated one – no reference to convenience, work issues, travel issues, family responsibilities etc. – that was the rule. If you wanted to see your loved one then you fitted in with the hospital rules – and people willingly accepted this. They knew that the alternative was to go back just a few years when there were no facilities such as this for the ordinary man and woman. How times have changed. How much more we expect and demand today. And this is the problem – we make far more demands on the NHS now than we  ever would have done in the past – it can never meet all our needs and desires. I suspect those working in it often feel overwhelmed as they run faster and faster to keep up with society’s expectations but fall further and further behind.
I have often reflected when I have visited people in hospital and several of us have sat around the bed, how this affects the daily life of the ward. We hear today that infections are a major problem in hospitals and we are reminded, it was so much better in years gone by – nurses kept things scrupulously clean. Our modern NHS doesn’t do such a good job is a common criticism – lazy, uncaring cleaners and sloppy nurses don’t provide basic care the right wing press often remind us. Mmmmm,  well maybe that is right but it always seems to me that in days gone by when a single visitor per patient was the norm it must have been so much easier to keep outside infections at bay – and, as is common today, when visiting hours can stretch from (say) 2.30 to 8.30 it cannot be easy for staff to ensure that everything is kept as clean as maybe it should be. But, society demands open access – you try telling today’s young mum that she cannot actually go into the ward where her child is lying – that she has to stand (as my mother did) outside on the lawn and wave through the window, or that she can only visit once a week at a pre-ordained time. You try turning the large family group away who all want to see desperately  ill granddad at the same time, you try telling mother that her little boy or girl cannot go into the ward to see their ailing Dad and that they will have to sit outside! Do so and your hospital manager, your nurse, your doctor would soon be headlines of the popular press and labelled as uncaring, callous, unsympathetic monsters. Times, indeed, have changed.

I find it beyond reason that anyone would go into a career like nursing and not have at least some innate measure of compassion and commitment – indeed, the lady who wrote to the newspaper praising the many different staff at her son’s hospital made exactly that point. What I believe does happen is that the constant pressure and unrealistic expectations imposed by society and, more especially, politicians, anxious for a quick vote, can take its toll on even  the most committed of  professionals. In this morning’s Guardian this point is well made by another correspondent: "...... compassion that led them [nurses, doctors etc.]  into the profession … [is] ground out of them" said the correspondent  And he went on "For the last three decades the NHS has been subject to a constant stream of Stalinist directives: "You must do this – no discussion, no piloting, no argument [and] the constant denigration of public sector staff as being lazy, incompetent, immoral or a combination of all three [by politicians];  the lies told by generations of politicians, who pretend a small uplift in budget or yet another "cost improvement programme" can deliver more and more services, of greater and greater complexity, without any real attempt to understand the true staffing and other costs of the planned service... [results in undercutting professionalism, endeavour and commitment]". Having spent four decades in the classroom and experienced the sort of criticism referred to above by a succession of governments one does, in the end, say "why bother".
Dickens could never have dreamed of this -
Victorians, and indeed my Grandfather would have seen it
as paradise
 Another aspect that has to be added into this complex equation  is the belief today that everyone will get well – that modern medicine is so miraculous that a solution can always be found – and, by association that health workers, therefore, have a responsibility to ensure that this happens! In Dickens’ day and indeed until relatively recently people, I think, were far more accepting of illness, pain and indeed death. Today, we get a cold, which we know will eventually go, but our response is to go along to our local GP and demand antibiotics. When the doctor is reluctant to prescribe them we feel slighted – we expect health and freedom from pain. I read recently that this is  major problem in many parts of the western world – especially the USA where many, I understand, are “hooked” on prescription drugs so that they never suffer any sort of pain. And, following on from this, we have expectations  for the health service that Dickens would never have recognised – nor indeed would many older people like myself: when our noses are too big or our skin aged or our breasts too small we increasingly demand that  the medical world  help us – we look for, and demand, physical perfection.  Or, go to a hospital casualty department any night of the week and you will see people in there who have come for the most minor of conditions – and then they complain when the service is slow or somehow doesn’t meet their expectations. When we watch the multitude of TV programmes about hospitals and their work we see high tech equipment, cutting edge diagnosis, hugely talented surgeons and the resulting happy and smiling patients leaving the hospital after being close to death. It is a twenty first century manifestation of some Biblical miracle, the lame are made to walk, the blind are made to see and the dead rise from their beds! And we think that this always happens – or should do. We forget that reality can be rather different, and all too often is. Sadly, however, death, the unpleasant aspects of aging and illnesses that cannot be cured do not, on a regular basis, make for good TV ratings. Better to have happy endings and an optimistic glimpse into the future that promises health for all than the reality of life, illness and death! The result, unfortunately, is that we all have a mistaken concept of the reality of illness and what can or should be done to help us. And, when I go to my GP I can now go for a variety of things - not simply to be cured when I am ill; I can have my annual flu jab to prevent my getting influenza in the coming winter, I can get advice and help if I want to improve my diet or stop smoking or limit my drinking. If  I am a woman I can arrange for a variety of gynaecological tests to be carried out. If I am a non-English speaker there is provision for some nineteen (yes, nineteen at my local GP!) languages to be made available to me so that I can explain my symptoms and know what is being proposed to help me!  I can get all the necessary injections I need to go on some holiday to a far off land. I can have my blood pressure monitored or my children can be immunised against many illnesses – now, wouldn’t that have impressed Charles Dickens when he spoke of the sad child in the egg box!   Each month when I visit my chemist to collect my regular prescription of eight or nine separate medications that keep my heart working, I stand in the chemist feeling slightly guilty. These wonderful drugs keep me upright – and yet cost me not a penny. I am not rich, but nor am I poor. And, yes, I’ve paid my taxes all my life so many would argue that I’m entitled to these “free” drugs. I’m not so sure – I could easily afford to make a significant donation each month towards the cost of the drugs – it seems to me only reasonable - and in doing so it would maybe ensure that those worse off than me might enjoy slightly better provision. But should any politician or party talk of raising prescription charges or ending free prescriptions for those like me who are retired - and all hell breaks loose.
A far cry from the suffering child Dickens described
And don’t think I am just  looking through rose coloured glasses  - that I do not see any problems in the NHS. Over the years I have complained with the best – and still do! When I can’t get the appointment that I want, when I disagree with what the Doctor tells me, when my father seems to not be getting the right sort of support, when my mother in law seems to be wasting away before our eyes because no-one appears to help her to eat her food, when my son breaks his leg and then has the operation to insert a pin postponed three or four times because of other priorities, yes I have complained and do complain. Sadly, in the emotive and highly charged world of health provision that is what happens - self interest, a lack of ability to sometimes see the bigger picture,  unreasonable expectations and the rest all kick in.
Dickens, I think, might have recognised these human characteristics  of self interest, intolerance, greed and the rest  that we all display – I’m sure that in their many ways they were just as prevalent in Victorian England as they are now. He would not, however, have had much truck with many of our 21st century responses and unreasonable expectations.  Nor, do I believe, that when the NHS was born in the late 1940’s such expectations were implicit in its original conception.

High tech health - a modern day re-enactment of a Biblical miracle
Times have changed. The expectations now placed upon what the NHS can and should provide are skewed and, perhaps, totally unreasonable. The government (and indeed, sadly, the Labour party) see the use of the private sector as a solution to many of the problems. I read this morning that the government is to allow many of the traditional NHS functions to be undertaken by what is called “Any Qualified Provider” (AQP) – physiotherapy, hearing aids, MRI scanning, dermatological services and the like can be provided by private companies. I’m sure that there is much to recommend this but it leaves me more than a little uneasy. I’m sure that it will be fine, indeed, the hearing aids that I use I bought privately from a separate provider. But, deep within me, I cannot escape the notion that it is a basic function of any society to provide for its citizens in matters of health and well being and that this is not a matter for big business, profits, the stock market or any other commercial enterprise – it is not a thing that you hive off for someone else to fund and from which they will profit. It is rather about what a society should be doing for itself and its citizens.
And that, for me, is the glory of the NHS – it is provision for the people by the people. That rationale says much about that society and its values – it was the back bone of the various social measures – including the NHS - introduced after the War by Atlee’s government. It says something about what we are as people. It says, whatever the shortcomings, whatever the costs we are prepared to fund, for the benefit of all – not just those with money – the necessary facilities to ensure health and well being - something that Dickens would have recognised and approved of all those years ago.
What Dickens saw each night on his walks around the East End
In his appeal for Great Ormond Street Dickens did not advocate the use of private companies – he knew only too well the potential conflict that ensues when care and compassion collide with  cash and capitalism.  On the night he made his appeal he  read to his audience “A Christmas Carol” – a story intended to point a finger at the excesses of the City and at the gradgrind world of the  accountant and selfish  Scrooge-like  figures that haunted it. He knew that people mattered when it came to care and compassion not cash, cheque books and capitalism. No, Dickens was appealing to ordinary people to pay up, to be responsible for the health and welfare of their fellow men to have a moral standpoint. His little story of the young child in the egg box was intended to plant a moral question into the minds of his audience and to ask them to shoulder the responsibility – not hand it on to some management accountant or venture capitalist or private equity company.
Part of Dickens' speech
Later in his appeal Dickens appealed directly to his audience and put the ball squarely in their court:   " Now, ladies  and  gentlemen,  such  things [the sick child in the egg box] need not be,  and will  not be,  if  this  company [the audience],  which  is  a  drop of the life-blood of the  great compassionate public  heart,  will  only accept the means of rescue and  prevention  which it is mine to offer [to make a donation]........ if every grateful mother who brings a child  there [the hospital]  will  drop a  penny  into  it [a box placed on the wall of the hospital],  the  Hospital  funds  may  possibly  be increased  in  a year by so large a  sum  as  forty pounds......... I will  not believe that  in  a Christian  community  of  fathers  and  mothers,  and brothers  and sisters,  it [the hospital] can fail........ to  be  well and  richly  endowed.   

The man himself
As Dickens concluded his appeal, the records tell us, that there were great cheers from the audience.  It worked - the appeal was very successful. Dickens acknowledged , it was a small drop on the ocean – he was originally looking for only thirty beds (an increase on the 10 beds that the hospital had started its life with only a few years previously) but in fact by 1865 there were 75 beds available.  It wasn’t the NHS; it was very small stuff with which to tackle the giant health and social problems of the time. The hospital had to depend upon the goodwill of well wishers and patrons - but work it did. People put their hands in their pockets, not necessarily for themselves but for their fellow man and woman – reflecting the basic premise and contract of a fair taxation system. It was a small start but what would he think today as he saw the results of his appeal and as he looked at all that we have and take so much for granted? I’m sure he would be unimaginably proud and be keen to remind us that we need to keep things in perspective and appreciate gratefully the magnificent provision that we have.


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