The Rules (for GPs)

With respect to Dr Moderate who was forced to moderate his own rules.

With respect also to the Velominati Rules for cyclists, which Dr Moderate and I fully endorse. On reflecting upon The Rules, I realised that they were for the cognoscenti by the cognoscenti. Rule #5 is essential if you are to respect Rule #70, important in cycling, but they have no place in general practice, where cooperation, not competition is ‘The Rule’. I taught myself to use a cut-throat razor in order to adhere to Rule #33.

As a GP I aspire to the rules below:

Rule #1. Do not consult in a bow tie. Ever. You are a GP.

Rule #2. Do not consult in lycra.

As a GP trainee back in 2000 I arrived at work in my lycra after a brisk cycle-ride into work and opened my bag and took out a freshly ironed shirt and realised to my horror that I had forgotten to bring any trousers. My surgery was starting in 10 minutes and it was about 25minutes ride home. I wore my shirt, black lycra tights and brown ankle boots for the entire surgery. To make matters worse, my consulting room was upstairs and my patients had to follow me up them. Unsurprisingly several of them said that whatever it was that was wrong with them when they made the appointment had got better while they were waiting.

Rule #3. Tidy your desk.

Do not consult from behind a mountain of paperwork. If you are a real GP, you will obviously have a mountain of paperwork, but don’t have it all over your desk. It makes it very hard to blame the hospital for the missing letter or x-ray result when your own filing is obviously in disarray.  It makes you look disorganised and unprofessional. Hide it behind the printer instead.

Rule #4. Clean your kit. Do not perform earwax transplants.

The little plastic funnels that fit on the end of otoscopes (the torch for looking in patients’ ears) are disposable. You might be doing your bit for the environment by reusing them, but in the grand scheme of resource-depletion and climate change, it’s simply not worth peering through Mr Smith’s waxy deposits when you’re trying to look at Mrs Jones’ ear drums. And it’s disgusting.

Rule #5. Tool yourself up. Do not use a ruler as a tendon hammer or a bike-light as an otoscope.

Not so long ago my practice invested in wall mounted otoscopes and opthalmoscopes (for looking in ears and eyes). The difference between these and my old battery-powered kit was vast. For a few months before this I had taken to using my bike light to look at my patients tonsils, which was bright enough to light up heads like pumpkins, but far better than my battery-powered otoscope which was no better than peering in with a match. Rulers and the edge of the bell of your stethoscope are unacceptable alternatives for a tendon hammer. Both hurt and on occasion break. Furthermore time spent looking for kit while your patients are waiting is unprofessional and wasted.

Rule #6. Dr. is enough. The long list of letters after your name doesn’t impress your peers or make sense to your patients.

A diploma in contraception you picked up in 1984 is of no relevance to anyone. If you are a professor or have won a gong, good for you, but it doesn’t make you a better GP. A four-foot name plate with a dozen or more letters after your name  makes you look vain and insecure.

Rule #7. Don’t refuse anything, even homeopathy until you have heard the patient’s story.

If the patient’s opening line is a request and your response is a refusal, you’ve ruined the consultation. The correct response to a request for a referral for chiropractic is a look of interested concern followed by, “tell me all about it”

Rule #8. Your consulting room is not your den. It should be filled with neither religious paraphernalia nor boastful evidence of your fecundity.

Patients may not share your religious convictions and they may be struggling with infertility. If you must have pictures of your family, they are so that you don’t forget what they look like, because you are always at work. I know one GP who keeps a picture in a draw and for patients who ask, she shows them. I keep a couple of pictures on my computer.

Rule #9. Do not fear dependency.

Patients sometimes need someone to lean on. It’s your job to be strong when they are weak. Fear of dependency has de-humanised the profession. Related to this is continuity of care. Take responsibility for your own patients, get to know them, build up a therapeutic relationship. Ever jot of evidence shows that healthcare is safer, more efficient and more compassionate when you are looking after your own patients.

Rule #10. Do not bullshit your patients.

There is no excuse for guessing. If you don’t know, patients can look it up, on their smartphone. Very quickly. Admit you don’t know everything. Up to 40% of symptoms that present to doctors defy medical explanation.

This is a somewhat ‘off the cuff’ list, compiled on a cycle ride home from work. I expect to edit it on the basis of your wonderful contributions.

The True History of GP Out of Hours Services

The True History of GP Out of Hours Services

Dr Eric Rose

 The early days of the NHS

Before 1948 general practice was a cottage industry. Most GPs worked independently usually from a consulting room in their own house. There were few if any staff with the duties of answering the phone usually falling to the GP’s wife (most doctors were at that time male) or in some cases a housekeeper like the indomitable Janet of Dr Finlay’s casebook.

When the NHS was created General Practitioners feared the idea of becoming salaried employees of the state and held out against it … Eventually a compromise deal was reached in which GPs would work for the NHS but as Independent Contractors rather than employees.

Much of that independence was however illusory. Whilst GPs remained free in some ways to organise their own practices the work they did for the NHS was controlled by a very tightly defined contract.

A framework already existed; Lloyd George’s National Insurance Act of 1911 provided for limited health cover for working men (but not their families).   The scheme was administered by Local Insurance Committees covering counties and large conurbations which held a list or panel of doctors prepared to work under the scheme. The panel doctors were subject to “Terms of Service” which were later lifted directly into the NHS GP contract.

The NHS also adopted the medical cards issued by Local Insurance Committees. and the record system consisting of cards contained in a card “Lloyd George envelope” which were still in use up till a few years ago.

1948-2004 24 hour responsibility

Over the years the name and form of the local body responsible for administering family doctor services changed a number of times and the Terms of Service were embellished. The main clauses however remained unaltered, two of which are most significant:

Firstly the contract was an individual one, that is to say that virtually every doctor working in general practice had a personal contract with the local NHS Body and patients were registered with a named doctor. Secondly there was a clause which stated   “a doctor is responsible for ensuring the provision for his patients of the services referred to … throughout each day during which his name is included in the … medical list.”

This meant that each GP was personally responsible for the care of his or her patients 24 hours a day 7 days a week and 365 days a year. Any failure in that provision could result in being hauled before the dreaded Medical Service Committee and “withholding of remuneration” or fines.

For single handed doctors this meant being on call to patients literally round the clock with no respite unless they could find a locum which was not easy. Even for those in partnership it meant a gruelling on duty rota. As well as the doctor himself the family were involved as at nights and weekends GPs were on call from home with no other provision for answering the telephone.

1966 Doctors Charter

By the early 1960s working conditions were such that there was a major recruitment crisis in general practice with newly qualified doctors preferring to work in Australia or Canada to the NHS. The then Health Secretary agreed to the 1966 Doctor’s Charter which provided amongst other things access to funding for new surgery buildings and  partial reimbursement of the wages of ancillary staff. It also included a “Group Practice Allowance” to encourage GPs to work together in practices. Despite this individual contracts and personal round the clock responsibility remained.

Group Practices provided some respite as it was possible for the doctors to take it in turns to cover the Out of Hours period when the surgery was closed.  However since the average partnership size was only 4 or 5 doctors  this still meant around one night a week and one weekend a month and more if a partner was away on holiday This was in addition to daytime work in the surgery.

In some large cities commercial deputising services were set up employing doctors to cover the out of hour’s period but these just weren’t viable in much of the country. Their use was also often limited by the local Family Practitioner Committee and frowned on by politicians who felt that some GPs were being paid for staying in bed. The fact that these doctors in had to give up part of their own income to pay the deputising company was either not understood or glossed over.

Personal Experience

My own experience was that I entered General Practice in 1972 choosing deliberately to go to an area which wasn’t covered by a deputising service as I felt I wanted to give complete care to the patients in my practice. At first as I was only 28 and came from working a hospital rota of 1 in 2 the work seemed manageable. Sometimes if I had been up in the night there was even an hour between morning and evening surgeries to take a nap.  I even enjoyed some night calls especially in the summer. Going out and being able to relieve pain or help someone with breathing problems could be a pleasure although it didn’t stop one from being tired the next day.

Over the next few years however things began to change. Daytime surgeries got busier and the gap in the middle of the day disappeared. Although most patients were reasonable, an increasing minority regarded it as their right to call the doctor to visit in the evening regardless of whether it was an emergency; some names cropped up so regularly that they were suspected of deliberately waiting till the surgery was closed. Some even thought they were calling a special night service instead of their own doctor who had already been working all day.

Family life had to be planned around the on call rota; my wife who by now had her own job had to be home by 6pm to answer the phone and during weekends couldn’t leave the house at all. The children were also restricted; it was only recently that my son, now in his 40s, told me how upset he was by my weekends on call.  I was on call and unable to visit my wife in hospital after our second child was born and was also on call when my older son had a serious accident at home. My memory is kneeling beside him trying to staunch bleeding with one hand whilst holding the phone in the other trying to find someone to cover my duty.

Social life also suffered as non-medical friends just couldn’t understand why we couldn’t join in all of their activities. Even when it was possible to go, I soon established a reputation for going to sleep at the dinner table due to having been up all night before.

In my practice weekends on duty began at 9 am on Friday and lasted until Monday evening. During the week before I would become increasingly tense and on the Monday night relaxation came only from a bottle.

One small additional factor that no one seemed to consider is that GPs answering night calls to patient’s homes had to drive themselves often whilst in an exhausted state. As I turned 40 the thought of continuing to work like this for the next 25 years filled me with horror but there seemed little likelihood of change and I remember being treated as an oddity by some senior colleagues at a local Royal College of GPs meeting when I said that I thought we should work to change the contract.

The 1990s GP opinion changes

Gradually it became apparent that I was not alone amongst doctors and there were also other forces at work.  There were an increasing number of women entering general practice who often needed to juggle family commitments around on call duties. What childcare facilities there were in the NHS ceased to operate outside “normal” working hours. Spouses of both male and female GPs had careers of their own and couldn’t be at home as an unpaid telephone answerer.

Workload continued to rise and Kenneth Clarkes’ imposition of a new and more demanding contract in 1990 made many doctors feel that the trade-off of 24 hour responsibility for independence was increasingly unattractive. A BMA survey showed that an overwhelming majority of GPs would now like to be relieved of the 24 hour contract and in 1992 the BMA began a campaign to get rid of the contractual obligation which made GPs themselves responsible for organising & providing a round the clock service.

We adopted the slogan “tired doctors are not good doctors”  Surprisingly considering their recent handling of the issue the Press were largely sympathetic and understood that GPs couldn’t go on working all hours.  As so often happens, politicians refused to listen to the arguments with ministers claiming that most of the time GPs were on call they were comfortably at home with their families. “They were in any case” it was stated “paid a generous fee for night visits after 10pm which amounted to  only a handful each month”. This ignored the fact that the greatest burden of out of hours work was in the evenings and weekends.  On a single Sunday at around this time I was called out 37 times only 2 of which qualified for these  payments which were in any case only payable to GPs working in small rotas of less than 10 doctors. The GP payment system was and still is complex but the total amount earmarked for Out of Hours duties including Night Visit Fees was an average of just under £6000 per GP per year.

1996 GP Out of Hours Cooperatives

Around 1994 the Department of Health organised a meeting of Family Health Service Managers from around the country which was intended to brief them on the government line on maintaining the 24 hour contract. But they were in for a shock as instead many of the managers reported that their local GPs were on their knees and the system was unsustainable. When Stephen Dorrell became Secretary of State for Health he vowed to resolve the dispute. What he produced were some small changes in the wording of the contract which made it clear that GPs did not have to respond to every request for a home visit and that the full night visit fee would be paid to doctors working in larger rotas. In addition there was an Out of Hours Development Fund which would pay out an average of £3000 per GP to support and encourage new ways of working.

The response of GPs was immediate and massive; all over the country groups got together and formed cooperative organisations sharing the out of hours calls  between a large number of  local GPs. Within months premises were found and staff such as receptionists and drivers employed some employed nurses with enhanced training to triage calls but the medical work still had to be done by local doctors themselves. In some cases this was on a compulsory rota in others it was possible for the doctor to buy out of his or her shifts and pay others to do the work. But the bottom line remained GPs still had individual responsibility for the provision of a service to their patients round the clock. If the cooperative collapsed or not enough doctors were willing to do their shifts then it was back to GPs covering their own out of hours.

Experience was that it needed a minimum of around 40 GPs to set up a successful cooperative which was relatively easy when based on a large town. But against all the odds they also were made to work in more rural areas such as Cornwall.

But not every GP was part of these groups; in remote areas where a cooperative was not possible they continued to be responsible for providing round the clock cover them. And the commercial deputising companies continued to operate in large conurbations.

The Carson Report 2000

Patients largely took to the new system where instead of getting a home visit from their own doctor or a partner they would unless bedbound go to be seen at a special out of hour surgery is. In some cases this meant travelling to a nearby town and inevitably there were complaint s about the delay involved which was taken up vociferously by local MPs. At the same time there were some reports by the Health Service Ombudsman of problems mainly involving commercial deputising services in one complaint in which I advised the Ombudsman there were insufficient doctors employed and a 7 hour delay in seeing a seriously ill patient who died.

As a result of these concerns the DH commissioned a team under Dr David Carson to investigate  GP out of Hours Services.   The Carson Report published in 2000  proposed some stringent quality standards and made it clear that these should apply not only to organisations such as deputising services and OOH cooperatives  but equally to individual GPs & practices providing their own cover.

Carson also proposed  “A new model of integrated out-of-hours provision should be accessed by patients via a single telephone call, routed in the first place through NHS Direct and  passed, where necessary, to the appropriate provider of out-of-hours services in that locality.”

One of the basic premises stated by Carson was  “The provision of family doctor services will continue to be based on the patient list system, with GPs retaining 24 hour responsibility for their list.”

Paradoxically it also stated ” the Primary Care Trust will have overall responsibility for the planning of out of hours services in its locality”  and stated,

“all out-of-hours services in a given locality (including GP Out of Hours Service A & E  Ambulance  and NHS direct) should be planned as a single integrated service”

It is clear that Minsters of the time and the Department of Health were enamoured of this idea as a subsequent report of the Health Select committee was to reveal.

 

The 2004 GP Contract

By the start of the 2000s  for a number of reasons General Practitoners’ morale was at an all time low.   Recruitment was increasingly difficult; whereas in the 1980s an advertisement for a partner might bring in as many as 80 applicants by 2000 there were rarely more than a handful. Some practices got none at all leaving the existing partners to cope with an ever increasing workload.  As stated at the outset the GP Contract had its foundations in a document produced in 1911 and the payment system was arcane.to the point that many GPs themselves couldn’t understand it.

As Independent Contractors GPs have never received a salary from the NHS instead there was a complex system of fees and allowances detailed in an increasingly thick volume known as the Red Book which made up the total practice income.  The doctors’ personal income derived from what was left after paying all the running costs of the surgery including equipment and the staff.

In a national ballot GPs called overwhelmingly for a new contract. At the same time under the influence of Downing Street advisors the government had its own agenda including opening up primary care to a wider variety of providers and introducing a form of performance related pay.

The mythology about the 2004 GP contract is that the BMA dictated the terms and the NHS Employers team who represented the government were a soft touch resulting in a contract which paid GPs a lot more for doing less work.  The reality is that negotiations were very detailed and there were many long meetings over nearly two years. Department of Health, Treasury and Downing St advisers were present every step of the way and reported back to their ministers. The final Contract was signed off by Health Secretary John Reid who was never a pushover. Indeed when some GPs expressed anxieties about agreeing to the New GMS contract the attitude of Reid was “no renegotiation”

2004 Responsibility for organising OOH passes to PCTs

 With regard to the Out of Hours part of the contract the BMA was clear that the current model of individual GPs having total responsibility both for organising and providing round the clock cover was unsustainable. The Department of Health was attracted to the idea of Integration of Out of Hours care which they thought would not only be better for patients but would give an opportunity to reduce costs. As a subsequent report of the Health Select committee stated:

“Although there were differences of opinion on many issues relating to GP out-of-hours services, our witnesses gave a clear and unanimous message that the handover of responsibility for GP out-of-hours services from GPs to PCTs represented an excellent opportunity to redesign out-of-hours provision for the better, designing services around patients and developing a new model of primary out-of-hours care that dovetailed with the wider economy of unscheduled care provision, including A&E departments, ambulance services, GP emergency clinics, Walk-In Centres, NHS Direct, and local authority social services provision.”

So the clause in the new contract which allowed GPs to opt out of their total 24/7/365 responsibility clearly suited both sides.  It must be stressed that this did not abolish the out of hours GP service it merely passed the responsibility for organising it from individual doctors to the Primary Care Trusts As for the cost: much has been made of a subsequent television programme in which 1 of the 8 BMA GP negotiators expressed surprise that it was only £6000.But this figure wasn’t plucked out of the air; it equates exactly to that part of GPs’ pre 2004 income which was earmarked for out of hours work.

As well as this £6000 per GP Primary care trusts would have access to the £3000 per GP in Out of Hours Development fund. In other word s they had exactly the same amount of money that GPs had used to fund the very successful Out of Hours cooperatives.

In less than 10 years with GP cooperatives had built up a great deal of expertise in organising out of hours cover and their management boards comprised local GPs. It might be supposed that PCTs would automatically want to use this expertise.

But this was not the case. The NHS Confederation (the managers own organisation) told the Health Select Committee that few PCTs were working positively with GP co-operatives, often instead being adversarial and generating conflict. In Buckinghamshire the GP cooperative was forced out of business literally overnight when the PCTs awarded the contract to a large company called Harmoni.  In Cornwall the exemplary Kernowdoc was passed over in favour of Serco. Both Harmoni and Serco has since been the subject of major complaints and in particular have been accused of failing to employ sufficient doctors. Ironically these cases mirror the very situation which led to the Carson Report. Despite these experiences a recent bid by a group of East London GPs to take back organisation of Out of Hours care for their patients was passed over in favour of a private company.

It is clear that  the blame for any failings and shortcomings in Out of hours GP Services  should rest with not with GPs but The  Primary Care Trusts which were until April 1st 2013 responsible for arranging the service  As long ago as 2004 the  Health Select committee recognised the risks and warned that many PCTs had failed to consider fully the risks and the responsibility for organising Out of Hours services was often being handled at  a junior level .It is clear that in many cases this warning was not heeded.

Are GPs working less?

With regard to the rest of GPs work there is no doubt that the 2004 Contract delivered a very welcome funding increase to practices and therefore an increase in GPs personal income but in the intervening 9 years this has been steadily eroded as funding levels have been frozen whilst the running costs of surgeries and staff pay have increased.   In addition the Department of Health has year on year increased the work that has to be done in order to qualify for payments. Despite being relieved of the round the clock responsibility most full time GPs are working hours well above the national average.

What is clear is that there has been a steady increase in the number of GPs working part time which is not surprising considering that over 50%  of entrants are now women  who as in other walks of life are likely to want to work part time for at least part of their careers

Summary

1 Prior to 2004 GPs were working to a 90 year old contract clause which made them personally responsible for providing round the clock services

2 For many reasons by the turn of the century this had become unsustainable

3 The Department of Health also had an agenda to integrate out of hours services

4 The 2004 passed the responsibility for organising out of hours GP services from individual GPs to Primary Care Trusts

5 The amount of money given up by GPs equated to what they were paid for out of hours work prior to 2004

7 Full -Time GPs continue to work hours above the national average but there has been an increase in the number of GPs working part time

8 Any perceived inadequacies in the current Out of Hours GP services are the responsibility of the Primary Care Trusts not of GPs

Dr Eric Rose  MB BS  FRCGP    Was an NHS GP for 36years . From 1989 until 2008 He was   a member of the General Practitioners Committee of the BMA and played a leading role in the campaign to reform GP Out of Hours

See also another detailed account by Dr Peter Holden: http://egplearning.co.uk/ramblings/general-practice-to-blame/

Loneliness

“The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted, uncared for and deserted by everybody” Mother Theresa

I am always early for my doctors appointment. I cannot imagine how anyone could be late for a doctors appointment, even though I know that lots of doctors, including mine, often run late. I hate to waste his time. I often worry that I am wasting his time though. It’s not a nice feeling. Sometimes, like when I’m feeling really down, I worry about it a lot. Quite often I say, “you don’t think I’m wasting your time do you?” and I always apologise, even though he’s always very nice and says I’m not, but you can tell sometimes, like when he’s looking stressed and tired, and you know there are patients still waiting and he’s running late, and he says I mustn’t ever worry about wasting his time, and I think, well what else could he say? And maybe he can’t tell me what he really thinks … and actually he’s thinking, “oh no, not her again!” I said that as well, the last few times I came in, actually, quite often it’s the first thing I say, in case that’s what he’s thinking, “Oh no, not her again!” I usually make a list of things so that he knows I’m not wasting his time. Sometimes I write the list when I’m waiting because I get quite forgetful these days. I think it helps. Once I couldn’t find my list and I just sat there not knowing what to say, and he said, “How can I help you today?” and I said I couldn’t remember and I was afraid … afraid that it would be over and I’d have to go and make another appointment and it might be another two weeks or more and it would all be over, but he looked at the computer and checked my blood pressure and my weight and while he did this we talked … I remember he said his little boys were playing a lot with each-other and were riding bikes … I don’t remember what I told him, I hardly ever do … Even so, I don’t think there’s anybody in the world who knows me like my doctor. Not any more. I remember one time I came in and one of the things on my list was a lump on my breast and it was quite a way down the list and I hoped that we wouldn’t get that far because I was so scared. There are some doctors you know, who only let you discuss one problem at a time. I don’t know how I would cope with that … I don’t even know how doctors cope with that … When I showed him my list with ‘breast lump’ at the bottom he asked where I wanted to start and I said I didn’t know, and he said we should start with the lump. I don’t really like getting undressed, even in the doctor’s. I think part of it is that when you’re undressed you cannot hide what you’re feeling, you feel vulnerable when you’re behind the curtains and he’s examining you – it is a bit like that, an examination, and you just blurt something out without thinking because you’re so nervous. It seems odd when you come to think of it, because he knows me and I trust him, more than anyone in the world, but I don’t want him to know everything about me. That’s just how I am, I don’t think anyone really knows you but yourself, and it’s not really anyone’s business but your own. I don’t like to bother other people, around here they’ve got enough problems of their own. That’s why I don’t like to bother my doctor – I bet he spends all day listening to people’s problems, far worse than mine. The lump though, it wasn’t cancer. He sent me to the hospital, just to be on the safe side he said. I was terrified, they had to do a biopsy and I couldn’t sleep for weeks and I wished I had never mentioned it in the first place. Nowadays I try to remember the list before I go in so I don’t have to show it to him.

I had caught sight of Joan as I carried a pile of paperwork, prescriptions and a cup of tepid coffee into my consulting room. My afternoon surgery wasn’t due to start for another half an hour and as usual she was early. I wondered why she didn’t bring a book or some knitting or something else to keep her occupied. Not long ago, for for the first time, to my embarrassment, I’d tested her eyesight and checked she could read – I’m constantly surprised by how many of my patients cannot read, but she had no problems. I even asked her why she didn’t bring a book or have a look at our practice newsletter. “I didn’t know you had a practice newsletter,” she said in a surprised tone. I wondered how it was she hadn’t noticed them when they were so clearly on display. As I walked through the waiting room she stood up to help me with the door, asking as she did so how I was, “You’re very busy as usual doctor,” I smiled back, heartfelt appreciation that my stress had been noticed. I wondered briefly before forcing some coffee down and looking at the first hospital letter in my pile why she always came so early to her appointments. Today she was my first appointment of the afternoon. Because I felt guilty about how long I usually kept her waiting, I booked her in first. I knew Joan so well I didn’t have to read her records before I called her in. She was anxious and a little depressed, worried about her declining physical health and forgetful with her medications. I was fond of her. We had been through a lot together, from her diagnosis with diabetes to her breast-cancer scare. She was kind and sensitive, gently curious about my own life and I didn’t mind sharing occasional details with her. In some ways I think of her as one of my favourite patients. All doctors have our favourites although we rarely admit it in public. We are, of course supposed to be professionally removed from having any actual feelings about our patients, as if professionalism can do such a thing. I wonder to myself if I ought to treat her differently, consciously avoid any special friendliness, concentrate more on her diabetes, cut the small-talk, refer her (again) to the specialist diabetic nurse … arrange a follow up appointment in six months time instead of leaving it up to her to fix the next appointment as she invariably does every three or four weeks. It can take two or three weeks for my patients to get a routine appointment with me so I phone several patients every day who need to speak to me sooner and I am always squeezing in extra patients before and after every surgery so that my working day seems to get ever longer. I worry that I’m depriving more patients with more pressing needs of appointments by seeing Joan so frequently. Her appointments, almost double the average six per patient per year, feel like an indulgence. What else do favourite patients get from me? Barely a handful email me from time to time, appropriately, about their health, but it’s not a service I feel I can offer to everyone as there’s no extra time to read emails and I’m rarely at work for less than thirteen hours at a stretch. Perhaps in the interest of fairness, access to my email address should be for everyone or no one? I worry that it’s privileged access given to busy, articulate patients rather than the chronically anxious, IT illiterate, elderly whose health needs are more serious or complex. What else do my favourite patients get? Nothing that I can think of other than a more relaxed manner, and an occasional insight into my own life. I also worry about missing something important when Joan comes in. It seems, in spite or perhaps because of our easy familiarity that we’re not achieving much. The NHS is increasingly scrutinised for productivity and efficiency, and as a practice our income is increasingly dependent on how well we control our patients diabetes or stop them smoking, both things I’ve failed to achieve with Joan. I wonder how I would justify the time I spend with her to an investigating health economist … would he suggest, as health economists always seem to do, that a nurse, a receptionist or a call centre operative could do the same job? Should I spending more of my time with those for whom ‘things can be done’?

I remind myself about her breast lump. Perhaps this is the nature of General Practice; we deal in the seemingly mundane, building up relationships of mutual trust, waiting for something life-changing to come along. But it’s more than that. We are constantly sifting through conversations, lists, symptoms and signs looking for something significant; a diagnosis perhaps, but also an event from their past, a deeply held belief, or a relationship, something perhaps from their subconscious. GPs are judged according to how many times we see a patient with symptoms suggestive of cancer before making a diagnosis – typically two or three, but what if the thing we are searching for is an explanation not for a breast lump or unexpected weight loss, but an explanation for something far more nebulous like frequent consultations …

He calls me in, it’s exactly two thirty, he looks stressed even though he’s on time. His hair is standing up – I know it’s his bicycle helmet that does that because I’ve seen him riding to work. Sometimes it stands up in three peaks all day. He should pay more attention to how he looks because on a good day he looks lovely. I’ve bought him a present today, it’s a bottle of wine. I think it’s quite good, but I don’t really know anything about wine. It’s difficult to know what to give your doctor as a present. The first time I gave him a bottle of wine I suddenly got really nervous because I thought that maybe he didn’t drink alcohol and I apologised in case he was offended, but he laughed, in a nice way, and I usually give him wine now if I can afford it, which is only sometimes. I think there must be some rules about doctors not accepting presents because he always says that I shouldn’t give him anything and he’s not really allowed to accept presents from patients. Once I asked the receptionists to give it to him, so that he couldn’t say no, but that’s not the same. I’ve never done that again. One time he said that if I wanted to say thank you a card would be better. I thought that was a bit unfair, for one thing I’m not really any good with words and for another, it should be up to me what I do. How are you supposed to show your appreciation if you’re not allowed to give them anything? It’s not fair. I’ll keep it hidden this time and give it to him just as I’m leaving so he hasn’t got time to say no.

I called Joan in from the waiting room. She stood up with greater ease and more obvious sprightliness than most of my elderly patients, prompting the questions, “Why is she here again? What’s going on? Am I missing something?”
“You’ve been cycling again doctor,” she said cheerily as she walked past me and I tried to flatten my hair. I was making a mental note not to be distracted by her list of minor complaints again today, but to try to find out what was behind them, to get to the bottom of these frequent appointments. Doctors are afraid of dependent patients. We are afraid that we create dependency or become magnets for so-called, dependent patients. Dependency is a dirty word in medicine. I like to think I am above that. I’ve spent time with many patients going through such awful experiences that they had no choice but to be dependent until they were able to take back control of their lives again. I’ve been meaning to write a blog about the importance and value of dependency for some time. My father-in-law, a retired vicar, was going to help me. But the zeitgeist is independence. Inter-dependence is making a bit of a comeback, but trying to mount a defence of dependence is to invite ridicule and scorn – it smacks of medical paternalism and worse. When I think of Joan, I imagine my critics and I struggle to defend myself. I start to blame myself for her frequent appointments, in all ten last year and already six this year and it’s barely even May. Why am I colluding with her lists? There is always a list, just enough potentially serious or important clinical issues to fill the appointment so we never have time to get to the bottom of what’s really going on, and then when it’s nearly over she asks about my children or gives me a bottle of wine and it doesn’t seem fair and there isn’t time to ask an awkward question or get stuck into a difficult conversation. So we arrange another appointment and I think next time, I’ll shoot through the list and get to the bottom of whatever it is. Am I avoiding difficult conversations because, if we carry on as we are, she is a friendly, familiar face and an ‘easy consultation?’ Am I afraid of opening a can of worms, raising some awful event from her past that was buried there that I’m completely unable to do anything about? Often, when my surgeries are running late, I’m relieved to see Joan, because she’s usually a quick appointment, but whose fault is that, aren’t we both sticking to superficial issues to avoid mutual discomfort? Perhaps there is no hidden agenda, and I’m just using it to justify all these appointments? If so, shouldn’t I tell her to see the nurse instead or arrange for her to phone me instead of booking an appointment? I start worrying that I am wasting my time and hers, both of us a drain on the vanishing NHS resources, achieving nothing.

He looks sad. I wonder why. He’s usually pleased to see me. I try to cheer him up, “I bet you’re thinking, Oh no, not her again!”, but he barely smiles. I’m afraid. Maybe it’s true, that is what he’s thinking and he doesn’t want to see me any more. I wouldn’t blame him. I’m only half joking after all, there are very few people I talk to these days. I haven’t got anything left to say, I even get fed up with my own company these days. It’s his job I know, but I don’t want him to put up with me just because it’s his job. That’s why I try to cheer him up, I think of all the other people he must listen to moaning all day. I don’t want to be like them. I want him to like me. “I’m sorry, doctor, I won’t take much of your time … it’s only a short list …” He interrupts, and asks if he can have a look, I try to find it but I can’t, I’m beginning to panic a bit now. “It’s just my medication and, if you don’t mind, could you have a quick look in my ear”. I don’t know why I said that, it just came out. “of course” he says, and quick as anything he’s looked in my ears and done something with his computer and there’s a prescription on the desk and he’s looking at me, really seriously but gently, like he’s going to tell me I’ve got cancer …

She looks really worried. I start to regret my brusqueness. What am I doing, taking out my frustrations on this poor woman? She has no idea what’s been going through my head, this is a problem of my own making. Actually … and now I can feel my blood boil, this is neither her fault nor mine; it’s the absurd reductionism of general practice, this stupid belief that a doctor-patient interaction is little more than making a diagnosis, prescribing a treatment or referring on to a specialist. The obsession with efficiency and productivity. No wonder they’re trying to replace us with smartphones and call-centres. What do politicians, policy wonks, management consultants or journalists know of trust or continuity or the relationships between doctors and patients? I curse my obsession with monitoring the health-policy chatter on twitter and in the media – a constant stream that denigrates and mis-represents the job I love, but I still struggle to understand it myself, even after a dozen years of full-time practice. How dare they assume to know?
I snap out of my dark thoughts and recompose,

“Joan … who do you have in your life?”

Why is he asking me that, is there something he wants to tell me but won’t say because I’m on my own. “There’s nobody else but … me …” As the words come out I hear them for the first time … I’ve admitted it, I’m on my own. There are weeks when I don’t go out of my flat. Sometimes I can go for a month without speaking to anyone at all. Sometimes when I’m really low and there’s nothing left, I’ll just eat spaghetti from the tin and drink a bottle of wine and then I’ll feel awful the next day and I won’t even get out of bed. Before I came here today I hadn’t had a bath for nearly a week. I wouldn’t ever want him to see me like that. I wouldn’t ever want him to see my flat, I’d be too embarrassed. Suddenly I realise I’ve been speaking my thoughts aloud, and he knows.

“Are you lonely?” he asks

“No, no, of course not!”, but of course I am, desperately lonely, but there’s nothing in the world that he or anyone else can do about it, so why is he asking? Tears start rolling down my cheeks. I can’t tell if I feel betrayed or relieved. He hands me tissues. I tell him how awful I feel, how sorry I am for crying and wasting his time. He’s not trained all these years to listen to me crying about being on my own and feeling sorry for myself, there are sick people waiting to see him, babies some of them. That’s who he ought to be seeing, I’m wasting his time. As if he can read my mind he tells me that I’m not wasting his time at all and that he’s sorry he never asked before. But I didn’t want him to know! I don’t believe him. What if he thinks that’s why I’m here, because I’m lonely? What will happen then? He’ll stop me coming, tell me to find a friend, join a club, take up a hobby … does he think I haven’t thought of that? You can’t treat loneliness, there isn’t a pill for it, not yet anyway.

I’m trying to imagine what life is like to be so lonely that you don’t go outside or speak to people for weeks at a time, wondering at how someone like Joan could be so isolated in such a big city. Wondering how she keeps herself going and what she keeps herself going for. I realise that I’ve got nothing to offer, the local club for elderly people was closed down last year, the befriending service seems to have folded, with more cuts to come, what will be left? I wonder how many of my patients are lonely and how many come to see me because they are lonely. I was trained to look for medical diagnoses, to interpret the world through a diagnostic lens in which the unique story and experience of my patients is lost. And so we beat about the bush, making small talk about aches and pains, unexplained tiredness, trouble sleeping, but never get around to talking about loneliness. When I worked in Afghanistan in 2004, the clinic was always full of women. It was a buzz of socialising and chatter. Few of them were ill, but all insisted on leaving with a prescription, some vitamins or some paracetamol would suffice, they needed something to prove to their husbands that their trip to the clinic was not merely a social occasion. And for our part we would write down a diagnosis to fit the prescription and the deception was complete. I look through Joan’s medical record and see carefully and concisely documented medication adjustments, blood pressure checks, smoking cessation advice, diabetic foot checks and urine analyses. But no mention of what we were really up to. We’ve been colluding for years. Or have we? There is no way of knowing which consultation will reveal a symptom of serious disease or help her take control of her diabetes, or give up smoking. Consultations are too complex and dynamic, unpredictable and creative to be separated into those that are for comfort and company and those that are about so-called ‘serious matters’. Loneliness has been linked to heart disease, strokes and depression, doesn’t that make it serious? Perhaps our appointments are some form of ‘treatment’ for Joan’s loneliness, reducing the risks slightly. If she wasn’t seeing me perhaps she would go to A&E where, not knowing her, they would find some reason to admit her to hospital. I recall an essay about a lonely woman who repeatedly presented new symptoms to the hospital doctors, so they kept her in for weeks doing more and more tests, up to and through the Christmas period, all because she didn’t want to go home.

So now he knows. He keeps telling me not to worry, that it’s ok, that lots of his patients are lonely, afraid to go out, isolated. I know he means it, because it’s true. I’ve been mugged, lots of us older people have. I won’t even come to the doctors after dark. But I don’t know what to say. It’s easier to talk about being depressed or feeling tired, or your aches and pains, anything really apart from the fact that you’ve got nobody and you’re on your own. I want to leave now. I get up to go, I say sorry for wasting his time, and then I feel silly saying it again, and I’m embarrassed so I leave. When I get into the waiting room there is a queue for the receptionists so I think I won’t wait to make another appointment, I just want to go home. Just then I realise I’ve still got the bottle of wine I meant to give him. For a moment I think I might go home and drink it, and then he comes out to call his next patient and so quickly I go up and give it to him, I say, “I forgot to give you this, to say thank you,” and I’m thinking, “Please don’t say you can’t take it, not this time …”

Key facts about loneliness and isolation:

Lonely people are almost twice as likely to visit their GP as patients who are not lonely (LPIGP) and are more likely to visit A&E departments (LTSWI)
A number of research studies conducted at different times in different parts of the UK, suggest that 5–16 per cent of the older population is lonely. Using these studies, it is possible to estimate that overall about 10 per cent of the general population aged over 65 in the UK is lonely all or most of the time. This equates to over 900,000 older people (LTSWI)

There is a steep rise in reported loneliness among the oldest old (80+), where roughly half the respondents report feeling a lack of companionship. (Age UK)

Twelve per cent of older people say that they feel trapped in their own home and 9 per cent they feel cut off from society. Six per cent report that they leave their house once a week or less. (LTSWI)

Women, responders in lower social class groups, those who rented their homes, those who lived in more deprived neighbourhoods, those with no car access, those with poorer self-assessed health, those who lived alone, and those who felt more unhappy about their current marital/partner status, reported higher levels of loneliness. Mean HADS (anxiety and depression) scores and number of symptoms were also significantly higher among responders who reported feeling lonely more frequently. (Someone to talk to? the role of loneliness as a factor in the frequency of GP consultations)

Certain groups are disproportionately affected by loneliness: the poor, the widowed, the physically isolated, people who have recently stopped driving, those with sensory impairment and the very old. (AgeUK)

Older people are more likely to be lonely if they live in a deprived urban area or an area in which crime is an issue. (LTSWI)

Levels of loneliness among ethnic minority elders are generally higher than for the rest of the population – 15 per cent reporting that they always or often feel lonely. 55 per cent of ethnic minority respondents say that they have someone who gives them love and affection, while the figure is 88 per cent for the general population. (LTSWI)

People who have enjoyed friendship and companionship are more likely to be lonely than those who have never had close ties. (Age UK)

The loss of a service which has had success at alleviating loneliness is worse than never having had the service at all. This also applies to patchy and unreliable services. (Age UK)

A report by the NSPCC published in March 2010 found that in 2008/09 almost ten thousand children were counselled by ChildLine about loneliness. Half this number telephoned about loneliness as their main problem, and this has tripled in five years, from 1,852 to 5,525. Children cited reasons for their increased feelings of loneliness, the most common being family relationship problems, issues linked to school, and bullying. (TLS)

Loneliness, social isolation and ill health.

Loneliness can affect our mental health, with 42% of us saying that we have felt depressed because we felt alone. Despite this, a relatively small percentage of us have sought help for loneliness (11%), which might reflect the apparent stigma attached to loneliness – almost a quarter of us (23%) would be embarrassed to admit to feeling lonely. (TLS)

Data across 308,849 individuals, followed for an average of 7.5 years, indicate that individuals with adequate social relationships have a 50% greater likelihood of survival compared to those with poor or insufficient social relationships. The magnitude of this effect is comparable with quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity). (Holt-Lunstad J, Smith TB et al. (2010) Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Med 7(7): e1000316

Lonely people are more likely to seek comfort in unhealthy food, avoid exercise, drink excessively and sleep badly all of which increase the risk of serious illnesses (The Lonely Society)

In 2006 a study of almost 3,000 nurses with breast cancer found that women without close friends were four times more likely to die than women with 10 or more friends. (The Lonely Society)

Loneliness is more easily felt than defined. It has been described as “a debilitating psychological condition characterised by a deep sense of emptiness, worthlessness, lack of control and personal threat”. But definitions fail to capture the intensely subjective experience of loneliness. My personal sense of loneliness which stems from a sense that my hopes and fears are too marginal or esoteric to be of interest to others, is of little relevance to someone else whose loneliness in old age crept up gradually after his wife and brother died and his hearing and eyesight gradually failed. The science of loneliness will perhaps always fall short of the art of loneliness in descriptive powers, much like the art and science of other kinds of suffering. Loneliness is not as simple as being isolated or alone and nor is it cured by being with others. In one study, among those who reported feeling lonely ‘mostly or often’, it was those who lived with other people who had significantly more consultations with their GP. Attempts to define loneliness have proposed social and emotional loneliness. Social loneliness happens when you are no longer part of a group, for example after disabling illness stops you going out or a day centre you attended is closed down due to local authority cuts. Emotional loneliness is when you are separated from someone significant, for example after bereavement or divorce. Situational loneliness is when circumstances, such as illness or stigma, stop you feeling connected to others. Chronic loneliness has been described as occurring when feelings of loneliness “become uncoupled from the situations that aroused them”. There is a vicious cycle of loneliness in which the lonely feel ashamed, blame themselves, and project negative feelings on social relationships, further alienating themselves from others.

References and further reading:

General articles

Loneliness, the state we’re in. Report from Campaign to end loneliness. Excellent UK charity

The Lonely Society. Report from The Mental Health Foundation.

 

Loneliness and Isolation: Evidence review for professionals Age UK

Loneliness, conflation and ideology Loneliness encompasses ideology and the relationship between individualism and society.

Britian’s loneliness epidemic. Guardian. Jan 2013

Toll of loneliness: isolation increases risk of death, study finds Telegraph March 2013

Loneliness ‘time bomb’ warning fuelled by baby-boomer divorces. Telegraph April 2013

The High Price of Loneliness NYTimes

The Grim Impact of Loneliness and Living Alone Forbes 18/06/2012

Shaking off Loneliness. NYTimes May 2013 Feeling lonely was associated with a 64% increased risk of dementia.

Doctors and Lonely Patients:

GPs experience with lonely patients Australian Family Phyisican 2008

Lonely patients in general practice: a call for revealing GPs’ emotions? A qualitative study Fam Pract. 2009 Dec;26(6)

Someone to talk to? The role of loneliness as a factor in the frequency of GP consultations British Journal of General Practice 1999

An epidemic of loneliness. Lancet. A Lonely, elderly woman doesn’t want to leave hospital before Christmas and fools medical staff into believing she is too sick to be discharged. Extraordinary, prize-winning essay.

The Old Duffers Club. One GPs solution for lonely patients

The Lonely Patient. Book by Dr Michael Stein

Lonely, isolated doctors:

Professional Isolation is a major risk factor for poor medical practice BMJ

Introduction to Balint work. International Balint Society

Loneliness, Isolation and ill health:

Social isolation, loneliness, and all-cause mortality in older men and women PNAS Feb 2013

Loneliness in Older Persons: A Predictor of Functional Decline and Death Archives of Internal medicine 2012

Social Relationships and Mortality Risk: A Meta-analytic Review PLOS Medicine

Loneliness A scientific study Cacioppo J, Hawkley L, 2002.

Loneliness Matters: A Theoretical and Empirical Review
of Consequences and Mechanisms 2010

How people and animals in isolation die sooner. The Atlantic

How to cope and what can be done

Preventing loneliness and social isolation: interventions and outcomes 2011 Social Care Institute for Excellence October 2010

How to cope with loneliness. Excellent advice from MIND the mental health charity

In a Lonely Place. Thoughtful, helpful piece from Mark Brown: One In Four Magazine

Friendship

Friendship. Stamford Encyclopedia of Philosophy

Patients, Friends and Relationship Boundaries. Canadian Family Physician Vol. 39 December 1993 Excellent analysis of the issues from a rural practice perspective.

Should doctors and patients be friends? Can this lead to an ethical dilemma? Journal of Pakistan Medical Association

The friendship model of physician/patient relationship and patient autonomy. Illingworth Bioethics 1998

Re-thinking the physician-patient relationship: A Physician’s Philosophical Perspective. Paul Qualtere Burcher Dissertation 2011

Why I’m stepping down as a GP over NHS ‘reforms’

Published by the Guardian today, written by Dr Paul Hobday.

One of the first articles I put on this blog, under ‘comprehensive guides to the NHS proposals’, was Dr Hobday’s comment on the BBC website here. You can see he has been watching this coming for a long time …

It’s been an amazing privilege working as a family doctor. I am trusted with the long-term care and health of sometimes four generations, and I have tried to help with their most intimate and complex problems, sometimes shared only with me. It’s the best job in medicine, and the NHS was the best place to practice.

So why am I retiring early? Because for several years I’ve fought the dismantling of the founding principles of Bevan’s NHS and on 1 April I lost. That was the day the main provisions of the Health and Social Care Act 2012 came into effect. On Wednesday night, a last-gasp attempt in the House of Lords to annul the part pushing competitive tendering sadly failed.

The democratic and legal basis of the English NHS and the secretary of state’s duty to provide comprehensive health services have now gone, and the framework that allows for wholesale privatisation of the planning, organisation, supply, finance and distribution of our health care is now in place. Since 1948, we GPs have been our patient’s advocate, championing the care we judge is needed clinically.

Everyone necessary for that care co-operated for the good of the patient – they didn’t compete for the benefit of shareholders. Sadly, patients are now right to be suspicious of motives concerning decisions made about them, which until recently, almost uniquely in the world, have been purely in their best clinical interest. Most politicians understand little about general practice, have no idea about the importance of continuity of care and blame GPs for a rise in hospital work, even though this is a direct result of their policies.

I believe patient choice is an illusion as I am restricted in terms of where I can refer and what treatments I can use. GPs are now expected tocollude with rationing, are sent incomprehensible financial spreadsheets telling us our “activity levels” are too high and in some areas areprevented from speaking out about this, despite the government’s weasel words about duty of candour after Mid Staffs. Practices are already being solicited by private companies touting for business, often connected to members of my own profession. But the lie that GPs are now in control of the money will soon be exposed. Most services are to go out to tender, which will paralyse decision-making.

Now your doctor, the hospital, your specialist or the employing company has a financial incentive built into the clinical decision-making – even whether or not you are seen at all. Your referral may be to a related company, with both profiting from your care – so was that operation, procedure or investigation really in your best clinical interest? Or you may be told a service is now no longer available. The jargon used is that “we are not commissioned for that”. But you can pay. The elephant in the consulting room is the ethical implication of private medicine. In my 30 years as an NHS GP, some of the most disastrously treated patients are those who elected for private care. Decisions were made about them for the wrong reasons, namely profit. Patients are rarely aware of this.

The politicians who drive this unnecessary revolution claim the NHS is not being privatised because it is still free at the point of use. This is duplicitous as the two are not connected. They are ignorant or dismissive of the founding principles of the NHS which include it being universal and comprehensive – both of which have gone. The NHS logo appears on all sorts of private company buildings and notepaper which is one reason patients haven’t noticed the change yet. Just leaving “free at the point of use” under an NHS kitemark doesn’t constitute a national health service. It’s now one small step to insurance companies picking up the bill (but obviously profiting from it) rather than the state. An Americanised system run by many US companies. The end of a “60-year-old mistake”, asJeremy Hunt once co-authored.

I am proud to have been an NHS GP. I believe the way a society delivers its healthcare defines the values and nature of that society. In the US, healthcare is not primarily about looking after the nation’s health but a huge multi-company, money-making machine which makes some people extremely rich but neglects millions of its citizens. We are being dragged into that machine and I want no part in it.

The politicians responsible for this must live with their consciences, as it is the greatest failure of democracy in my lifetime.

Section 75

Here are links to some of the best pieces about section 75 being debated today in the Lords.

To quote Don Berwick, head of the Institute for Healthcare Improvement and the new NHS safety tsar:

please don’t put your faith in market forces. It’s a popular idea: that Adam Smith’s invisible hand would do a better job of designing care than leaders with plans can. I do not agree. I find little evidence anywhere that market forces, bluntly used, that is, consumer choice among an array of products with competitors’ fighting it out, leads to the health care system you want and need. In the US, competition has become toxic; it is a major reason for our duplicative, supply-driven, fragmented care system.

House of Lords protest today 12 midday to 5pm College Green (opposite parliament)

Section 75 of the health act is the engine for its destruction. Kailash Chand. Guardian. April 22nd

In the new NHS lawyers, not GPs, will be in the driving seat: GP commissioning groups will soon take over much of our healthcare, but they can’t compete with corporate legal firepower Colin Leys Guardian March 19th

Amended section 75 regulations still break promises on NHS regulation. Caroline Molloy, Open Democracy March 20th

Fatal attraction: The public will never forgive the government for undermining one of the nation’s most popular services. That’s why it is essential that Peers support my motion to kill off these regulations. Lord Hunt

Section 75: Healthcare commercialised at a stroke? NHS Alliance, April 18th

Private company preferred to local GPs, the reality of our new health market. Open Democracy

‘Charities are likely to be forced to walk away in light of the intolerable burdens of perpetual commissioning rounds’ Health Service Journal April 22nd

Why we are concerned about the section 75 regulations. Marie Curie Cancer Care April 23rd

Can the Lords, with their vested interests be trusted to overturn section 75? Social Investigations.

The NHS reforms have introduced an unhealthy level of competition. Randeep Ramesh, Guardian. April 23rd

NHS Section 75 revised regulations a charter for privatisation. UNISON

Section 75 The privatisation agenda, ie. what the college survey warned about. Royal College of Physicians.

GPs ar e’agents of state privatisation’ says GPC (British Medical Association General Practitioner’s Committee)

Live blog from the Health Service Journal: http://www.hsj.co.uk/news/hsj-live/hsj-live-24042013-lords-debate-move-to-kill-competition-rules/5057811.article?blocktitle=HSJ-Live&contentID=9221

Update 7.47pm Section 75 is being debated late into the evening.

Instead of weeping (or rejoicing should your Virgin shares have just increased in value) watch this video of Chunky Mark, The Artist Taxi Driver who pushed a pig nearly five miles with his nose to 10 Downing Street in protest at the privatisation of the NHS

How I Learned to Be Cancer Caregiver (Guest Post)

Guest post from Cameron Von St James about his experience of caring for his wife.

 

After my wife’s mesothelioma diagnosis, she often commented that she couldn’t imagine what I went through as her husband and caregiver.  I realize now that my story can be of some benefit to those currently fighting cancer, and I wanted to share more of my perspective with them.

Our daughter, Lily, was born just three months before Heather’s diagnosis.  Our lives were full of joy and excitement at the thought of what the future held for our new family. However, all of that happiness would be ripped away from us in an instant just three short months later.  I remember how I felt after her diagnosis, filled with uncertainty and fear. Heather was crying, and I could not imagine how we would get through this.

I remember feeling so overwhelmed in the next few moments.  I wanted to break down and cry. The only thing that brought me back to reality was the physician’s questions. Though I was overwhelmed, I realized that I still had to make life or death decisions with my wife.

Immediately after the diagnosis, I had a range of emotions including fear, anger and rage. Because I didn’t know how to manage my anger, I often used profanity and lashed out at others in an effort to vent my emotions.  However, I quickly realized that my wife needed me to be strong, and that lashing out at others could only cause more harm.  Eventually, I learned to control my emotions better and keep them in check. It was important for Heather to view me as a source of optimism and stability, and from that moment on that is all I tried to be.

After the diagnosis, there were many days when I had a long list of tasks to complete, and I was overwhelmed. I had to work, make travel arrangements for medical appointments, care for our daughter and pets, take care of the house – the list went on and on.  I couldn’t see how I would ever get everything done.  I had to learn to prioritize and create a routine.  Most important, however, was learning to ask for help.   We were so blessed to have a community of friends and family all willing and eager to help in any way that they could, but it took me a long time to accept their generous offers, thinking that I could do everything on my own.  However, once I finally did accept their help, a weight was lifted off my shoulders.  I will be forever grateful to each and every person who offered us a helping hand during this difficult time.

The hardest part by far, for me, was the two months following Heather’s surgery in Boston.  Heather underwent a major surgery called an extrapleural pneumonectomy, and during the operation we sent Lily to South Dakota to stay with Heather’s parents.  As soon as she was well enough to travel, Heather left Boston to join Lily at her parent’s house, while I returned home to continue working.  Heather needed constant care during her recovery, and we both knew that I would be unable to care for her and Lily while working full time to support us. Therefore, we made the very difficult decision to be apart for the next two months while she recovered and prepared for chemotherapy and radiation treatments. During those two months, I was able to see my family only one time.

I missed them so much that one Friday night after work I drove 11 hours through a major snowstorm.  I even had to pull over and sleep for a few hours on the side of the road while the plows did their best to clear a path. When I arrived, I made the most of the 24-hour period I had to spend with my family before driving back for work on Monday morning.  It was a lot of grueling travel for a few precious hours with them, but it was worth every second.

I learned a lot during this time. I learned to control my emotions and accept help from other people. Finally, I learned to never regret or second guess the impossible decisions that cancer forces us to make.  Rather, we learned to take comfort in those decisions, no matter how difficult, as they gave us some small amount of control over a situation that often seemed completely out of our control.  I am happy to share that my wife is still healthy over six years later. I hope our experience will inspire others in their own battles with cancer.

 

Am I an extremist?

Last night I debated with journalist Ian Birrell on BBC Radio 3 Nightwaves

The question was, ‘Is nostalgia for the idea of an NHS inhibiting necessary, clear-eyed debate?’

NHS workers are united on 2 fronts, The need for care to be based on need and a dislike of constant interference by government BMJ

I believe that there are two over-riding reasons why we are nostalgic, the first being that we are driven by a sense of fairness, that no matter whether you are a judge or journalist, baker or banker the NHS will provide comprehensive free healthcare. This was fought for against the interests of the rich (including rich doctors) right from the beginning. There is a clip on the Nightwaves website  of an interview with Ken Loach about his film The Spirit of ’45 which looks at the roots of the welfare state. The first few seconds of the interview are a recording of GP, Julian Tudor Hart who is old enough to remember life before the NHS:

“I think the expectation was, we’re not going back to the Britain of the 1930s, it wasn’t just never again about war, it was never again about ‘that kind of peace’, where everything was run by rich people for rich people”

Ken Loach says,

There’s no nostalgia, people in the film say clearly what was wrong,  … bureaucracy, there was no industrial democracy, there was no participation between workers and management, the old economic structures persisted, … but the greatest achievement was the NHS … and it’s at the point of destruction now.

Fairness is one nostalgic value that people value deeply. The second is captured by the dancing Matrons in the Olympic opening ceremony. This symbolises nurses and other healthcare professionals being free to take care of patients without the constant interference of government or management. The nostalgic view of the NHS is not so much a harking after a long-lost past, but very much a present day aspiration, in which healthcare professionals are free to act in partnership with their patients, in their best interests. We are in the middle of the biggest top-down re-disorganisation of the NHS in its history and are facing unprecedented drives to cut costs and meet targets with no confidence from patients or the vast majority of healthcare professionals that we will be given any more freedom to get on with providing care.

Ian Birrell’s accusation that I am an extremist is based on his belief that I believe that under no circumstances should the NHS fund private or third sector organisations – and so I would wish to deprive his severely disabled daughter of the care she needs.

I’d like to clarify that this is not my position. If the NHS is unable to provide the care my patients need, I think it should pay for another organisation to provide it. This week I have referred my own NHS patients to a rape crisis centre and a drug treatment service, privately provided, NHS funded.

There is no doubt that the NHS depends on a range of other providers, for example, in Hackney almost 100 different mental health organisations receive NHS funding. I don’t have any problems with this.

It doesn’t therefore follow that I believe a market in competing private providers is in the interests of my patients or the NHS. As Don Berwick - perhaps the most respected expert in healthcare safety in the world points out,

 I find little evidence anywhere that market forces, bluntly used, that is, consumer choice among an array of products with competitors’ fighting it out, leads to the health care system you want and need. In the US, competition has become toxic; it is a major reason for our duplicative, supply-driven, fragmented care system.

On the issue of whether nostalgia is a hindrance to clear eyed debate or necessary reform, I believe, like Berwick that it is not nostalgia, but constant top-down reorganisation that is a barrier to the kind of progress the NHS needs,

“Stop restructuring.” In an echo of Francis, [Berwick] warns that it is destructive of time and confidence and leads to risk averse healthcare. Stability, he says, helps change “become easier and faster, as the good, smart, committed people of the NHS – the one million wonderful people who can carry you into the future – find the confidence to try improvements without fearing the next earthquake.

Quotes from Nye Bevan, In Place of Fear, 1951

“Abuse occurs where an attempt is made to marry the incompatible principles of private acquisitiveness with a public service”

[the NHS] “is an act of collective goodwill and public enterprise and not a commodity privately bought and sold”

“Financial anxiety in a time of sickness is a serious hindrance to recovery, apart from its unnecessary cruelty”

“Preventive medicine: another way of saying health by collective action”

“Instead of rejoicing at the opportunity to practice a civilised principle, Torys have tried to exploit the most disreputable emotions”

“Without rational planning … we are left with a patchwork quilt of local paternalisms”

“A free health service is a triumphant example of the superiority of collective action and public initiative”

“the essence of a satisfactory health service is that poverty is not a disability and wealth is not advantaged”

“… new legislation on the NHS has been announced. It confirms our worst fears … it will mutilate the service” Bevan 1951, response to Churchill’s re-elected Tory government.

Articles by Ian Birrell:

Why I don’t believe the NHS is sacrosanct

Grow up!

The NHS is flawed