Friday, November 12, 2010

Power and powerlessness in the NHS

The Guardian today reports the tragedy of twins dying because of a mistake over drug administration, at Stafford Hospital, already at the centre of an investigation into poor standards of care.  The investigation into allegedly hundreds of unnecessary deaths at the Staffordshire hospital, is looking into why so many NHS bodies didn't act sooner to halt the "terrible standard of service inflicted on patients...".

Whenever anyone says anything like that, I am transported back ten years, to a time when my husband was admitted to hospital with an abdominal obstruction.  He was seen in the Accident and Emergency department by a junior member of a team of doctors who weren't from the Gastroenterology department, and admitted to one of the wards in Hillingdon Hospital.

There he was literally used as a guinea pig by several junior doctors from that team.  At one point they planned to give him an explosive laxative to try to shift the obstruction, and it was only when I asked them what would happen to my husband if the obstruction was not to be shifted by the use of laxatives that they decided to abort that procedure.

He was put on conservative treatment, which meant nil by mouth and drip only for fluid.  I frequently found that his drip had run out and no one had replaced it... something which gradually increased the pain from his stomach.  I would try to insist on the drip being replaced rapidly because he is a patient who "tissues up" very quickly... if a drip is left unused for more than half an hour, it become unusable.  Thus often the simple job of replacing the fluid turned into a lengthy fight for him to have a new drip inserted and the bag replaced - often there wasn't a doctor available to redo the drip, and he waited hours to have it inserted... and then the fluid wasn't increased to take account of the fact that he had had none at all for several hours.

I complained about his treatment, and had one nurse tell me that she often didn't drink all day and it didn't do her any harm... and another nurse tell me that the nurses were fed up with me complaining because they had some "really sick" patients on the same ward.

I watched my husband deteriorate day by day, and called in all the friends and family with any experience of nursing or medicine to see if anything would make a difference.  By the time he had been in hospital a week, he was vomiting faeces, weak, dehydrated and deteriorating before my eyes.

I wont go into the gory details, but there were many incidents... my husband was screaming in agony one day when all the nurses were in handover meeting and ignoring the bells, and so all the men in the cubicle of the ward, threw things and shouted until someone came.  The man across the ward was constantly complaining about pain, and the nurses laughed at him and told him to use his morphine pump... he complained that it wasn't working and they ignored him... only realising when the hadn't had to change the syringe after three days that it hadn't ever worked at all.

The low point was when I was sent with John in a wheelchair to the X-Ray department and the X-ray staff were so kind that it made me cry... they realised he should never have been made to get into a wheelchair, and his drip should not have been disconnected for the journey.

A doctor came in to see him and when I said I was very concerned about his condition, said:  "Mrs Berry, are YOU a doctor?  I can see him, he doesn't seem that ill to me."  I turned to him and said that I didn't need to be a doctor to see that he was deteriorating day by day... and that looking at him from the end of the bed was not the same as examining him.

He examined him and suddenly, he was an emergency.  It seemed that even though they were seriously concerned about his condition, he wasn't scheduled for surgery until the Friday, and then there seemed to be some sort of hold up relating to the drip kit for theatre... I overheard one of the nurses say that the system was that they had to turn in the old one to get a new one, and no one knew where it was... the anaesthetist was becoming concerned that my husband wasn't in a fit state for surgery and I was becoming concerned about her cancelling the operation, because I knew he would die without it, and so I disclosed to the anaesthetist what was going on and she obtained the necessary theatre kit.

He had his operation and was fortunate enough to go into the high dependency unit as they had a spare bed, instead of back onto the ward.  They removed necrotic tissue that no laxative would have shifted, and he was sewn back up.  Unfortunately I watched him deteriorate over the next 24 hours, and eventually watched as his blood pressure dropped to an impossibly low level.  The nurse was simply recording the numbers, and I asked why nothing was being done about it.  He said that the machinery must be faulty because he would be dead with such low numbers.  As a tactic, I had hysterics to draw attention to my husband...something I have never done before and hope never to have to do again.

It turned out that the machinery was right.  They began to push blood into him to compensate for the low blood pressure, and warned me that things looked bad.  My family gathered in the waiting room alongside the intensive care unit, and I went to see them, just as one of the surgeons happened along.  He met John's brother and made some throwaway comment like... "of course your brother is a much bigger man than you...", at which we both looked a question at him and said..."no, they're about the same stature and build" at which point the surgeon rushed away.  John was bleeding into the stomach and had an emergency operation to fix the nick in his testicular artery.

He had been so dehydrated during the first operation that when the surgeon nicked his artery, he didn't bleed.  Once he had been hydrated again, he began to bleed internally.  I began to wonder if anyone in the hospital ever used logic to solve problems... obviously the blood that was being pumped into him at regular intervals was going somewhere, and there was a reason why his blood pressure remained dangerously low.

Over the next two weeks that my husband was in hospital, I talked to a lot of people.  I talked to surgeons, to nurses, to health care assistants, to porters.  No one in the hospital felt that they had the power to change the things that needed changing.  Nearly all of them recognised the things that were wrong with the hospital, none of them felt that there were ways of feeding that information to the people who took decisions... in fact, my experience since then with hospitals has led me to feel that the whole management system of the NHS is designed to prevent the information that the workers know from getting to the people who matter.  The hierarchy is  there to give people a feeling of prestige and status, but it acts as a wall to information coming from below.  The middle management hear the complaints of both the workers and the management and absorb both instead of conveying information - in fact they more or less see that as their responsibility, to protect the management from the staff, and the staff from the management.

An example of this was when my husband returned to hospital to have his colostomy reversed.  When he came out of surgery, he was put into a private room, and I was told that he ought to have oxygen, but that they were short of the little disposible widgets which are required to be able to fit the oxygen mask to the equipment and so could I please pinch him from time to time to ensure he was breathing enough to keep his oxygen intake up.  When, despite my pinching, the alarm kept sounding for low oxygen, their solution was to turn off the alarm.

I went to the board meeting of the hospital, and reported this event to them.  They expressed shock and horror.  They had invested a huge amount of money to be able to pipe oxygen to each of the rooms and wards in the hospital, what was the point of that investment if patients weren't reaping the benefit, all because of a £3 widget?  I was asked to talk to one of the staff about it.  I duly rang up and talked to someone in the administration... and the first thing they told me was that they also worked as an agency nurse in the hospital and they were fully aware of the problem.  Fully aware, doing nothing about it.

I have come across this time and time again, in hospitals, that people are fully aware of the problems which are putting patients lives at risk, and yet do nothing about it because it isn't their responsibility - they don't feel responsibility, or any power to change what is happening.In that case it was all about budgets:  the wards hd a budget for the widgets, and if they exceeded the budget they ran out of widgets, QED.

After my husband was released from hospital I talked to people in the community, his GP, the local community health council, all sorts of people, to see if any of them felt that they had the power to change things.  None of them did.  Most especially the local GPs who felt that they had to maintain a good relationship with their local hospital in order to best serve the majority of their patients, even when they could see things going wrong.

This is at the heart of the problem... you can't expect other NHS organisations and practices to complain and report problems, because they fear that the good relationship they have with the institution will be destroyed.  That's human nature.

I have since had similarly awful experiences with Great Ormond Street, one of the most famous hospitals in the world, but by that time the Community Health Councils had been disbanded, and there was a Patient advocacy and liaison service in the hospital.  I had the greatest difficulty in getting hold of them, and despite many emails, no satisfaction.  It wasn't that I wanted to be compensated financially in either case.  My aim was that I wanted to prevent another patient from suffering the way we had.  I failed in that aim, on both occasions.

My belief is that the only way to ensure that problem hospitals like the Stafford Hospital come to the attention of the authorities in good time, is to set up a truly independent inspection service made up of both doctors and laypeople.  They should inspect hospitals outside their own area, where there is no possibility of damage to the relationships which doctors rely on, and they should be briefed not to establish a relationship of any sort with the hospital they are inspecting.  One of the problems with the Community Health Councils was that the people inspecting hospitals had a stronger and closer relationship with the people they were inspecting than with the community they were there to represent.

There is no perfect system, but some hospitals do better at this than others, and the ones which do well ought to be teaching the ones who do badly.  Where things go wrong, they should be looked at, and somehow patients, and consultants and nurses and administators and GPs and everyone involved needs to feel that if there is a problem it is everyone's responsibility, not no-one's.

I still have flashbacks to the two incidents which involved my nearest and dearest, and both of them survived.  I can't imagine how awful it must be, how much guilt and grief the surviving family members must have about the people who died needlessly at the Stafford Hospital.  But I do now that it is possible to change this, and that we all have a part to play.  The contact I have had with Americans in the course of my work in virtual worlds has led me to value the NHS and the services it provides.  It is a wonderful thing, even if parts of it need overhauling.  It would be possible, I do believe, to nurture it in such a way that we keep the things which make it such a unique institution, and change the things which let it down.

I have met some wonderful people in the course of my life, working for the NHS.  Dedicated, caring, clever, and committed.  Systems that let those people down and make them feel powerless, need to be changed, and I hope the inquiry at Stafford will help to do that.  It would be good to make those relatives feel that something positive can emerge from their losses.