NHS Blog Doctor: The Crippen Diaries 2006 (Week 7)

Monday 13 February 2006

Melissa was in this morning. She is a delightful, highly intelligent poly-symptomatic hypochondriac. I first met her fifteen years ago. I have seen her on average once a week since then.

She was convinced she had bowel cancer. Her symptoms, such as they were, did not fit, and at twenty eight it was an unlikely diagnosis. But her father had died of it and one sympathised. Normal examination, normal bloods, negative occult bloods, no physical findings and finally a normal coloncospy. “Of course” she said “that doesn’t mean I am not going to get it next year.”

Indeed it does not. That is the problem with medicine. You can inflict every screening test known to mankind on a patient and you still cannot give them a guarantee that they are free from all known disease, or indeed that they will live until dinner time. But we moved on from bowel cancer to ovarian cancer. No family history here but, as Melissa said almost with relish, “It is very difficult to diagnose, isn’t it doctor?” Indeed it is. There is no screening test. But we did a blood test and an ultrasound, and all was well.

Melissa moved on to her upper gastrointestinal tract, and we investigated that, once again with no positive findings.

Finally, three weeks ago, Melissa came in with a breast lump. “Back again, doc. I know you will laugh, but I’m sure it’s cancer.” I did not laugh and it was cancer. It has been removed. All further screening tests are negative. She is seeing the oncologist next week to talk about options and adjuvant chemotherapy.

Melissa is happy. She has a faint, slightly satisfied air of “I knew there would be something serious”. She has always had complete insight into her hypochondriasis and indeed has laughed at it. All her other aches, pains and bodily worries have now receded. I asked her today how she felt about the breast cancer. She said, on balance, it was a relief and she was not going to let it get her down.

She will see much less of the doctor now that she has a serious illness.

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Tuesday 14th February

A day devoted to dealing with Tony Blair’s healthcare bureaucracy.

An email from the Primary Care Trust (PCT). The PCT is the re-branded Health Authority. In the early 1990’s the Thatcher government introduced an internal market into the health service. GPs became “purchasers” of health care and “the money followed the patient.” It was called “fund-holding”. Lots of problems, but it worked. Tony Blair hated it. It was the antithesis of state “enterprise”.

Fund-holding was abolished in 1997. Eight years of failing health care later it is to be re-introduced. It has to be re-branded so that we do not notice the U-turn. It is to be called Practice Based Commissioning (PCB). Unlike fund-holding, it comes with a new hierarchy of bureaucratic controls invented and policed by echelons of over-paid, over-promoted administrators who would be better employed as assistants in hardware shops.

Forests in northern Europe have been felled to provide the paper for these infinitive-splitting, acronym-sodden bureaucrats to clothe PBC in the protocols and controls necessary to prevent independent professionals making autonomous decisions.

The PCT PBC document is far too long to reproduced in full.

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I spend the rest of the morning agonising over whether or not to refer Robin, a patient with rectal bleeding, to the colo-rectal clinic under the Two Week Rule. He is 47. He has a three week history of rectal bleeding with no peri-anal soreness. He has a borderline anaemia (Hb 12.1). He has had a change in bowel habit for the last three weeks, with predominantly lose motions, but this started after a gourmet (more gourmand from the history) holiday in France. He is not clinically unwell, and stool cultures are negative. His ESR is 28. His father had bowel cancer at the age of 64 but is alive and well twenty years later.

There is no doubt that Robin needs investigating. That is obvious. In the old days, before the TWR, I would have referred him to the surgeons with a letter marked urgent. The surgeon would have read my letter and made appropriate and timely arrangements.

The criteria for TWR referrals are made by the colo-rectal surgeons. They are a nice lot, but they do not live in the real world of family medicine, which involves lots of fudge, compromise and discretion. Robin’s history does not meet the TWR criteria. I can still refer him under the TWR but, if I do, whether or not he has cancer, I will be admonished.

TWR referrals go to the TWR commissar, who is a nurse-administrator. She does not exercise discretion. If I make a TWR referral, Robin will go into the TWR system and his investigations will be expedited. I will get a letter from the commissar telling me off for ignoring the criteria. I do not give a monkey’s toss what the commissar thinks, and will bin her letter. But I do care a great deal about the system which provides rapid access for patients with possible malignancy. I do not want to log-jam it. I know that some of my GP colleagues in other practices are not as fastidious as they should be and use the TWR irresponsibly to get their patients seen quickly.

The overuse of the TWR by GPs means that surgeons are now so busy assessing inappropriately referred patients that they do not have the time to discuss patients in the middle ground.

And then there is the medico-legal responsibility. If I do not refer under the TWR and Robin turns out to have cancer, I will have to justify my decision not to use the TWR system. The headline in the paper will be “Local GP delays referral for cancer patient.” It will not mention that I stuck to the criteria.

Nightmare. What should I do?

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Thursday 16th February 2006

A call from one of the Palliative Care Doctors about a patient who has an aggressive colon cancer. She has had a resection, but has wide spread lymph node involvement and inoperable liver secondaries. She is being “managed” by the MDT. This is the multi-disciplinary-team. The oncologists, the surgeons, and the radiotherapists meet to treat the patient’s CT scan. She has a central line in her neck. They are pumping in the chemotherapeutic equivalent of Domestos. The CT scan shows the secondaries have regressed by one millimetre. The MDT team is feeling pleased. The patient is feeling wretched. Palliative Doc and I would like to stop this chemotherapy, but the patient wants to soldier on. It is hard to give up on treatment. Some of the oncologists would squirt chemotherapy into coffins if they could.

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An elderly man staggers in saying he has terrible abdominal pain and cannot pass urine. He is in acute on chronic urinary retention. He is due to have prostate surgery in four weeks. The urology nurse practitioner saw him last week and thought he could manage without a catheter. He cannot. I take him straight down to the treatment room and re-catheterise him. This is one of the most gratifying procedures in medicine for both doctor and patient. It brings immediate relief. I am now half an hour behind, but it was worth it.

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At the lunchtime meeting, I bring up the question of chronic debilitating illness occurring after Lyme Disease. I had so many emails about this that I need to discuss it and “share” my ignorance. No one else has heard of it either. I am not sure if I am reassured or frightened by this. We are all going to read it up.

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Friday 17th January 2006

Duty doctor day today, and it was a really bad one. Did not stop. No lunch. Three choclate digestive biscuits and a coffee.

First patient in made me half an hour late. A refugee from Kosova. He has been here for several years. A kind, quietly spoken man. Gentle. He is working as a ticket collector for British Rail. In his own country he was a successful couturier. His mother is elderly and still in Kosova. He cannot go back there. There were “problems” which he will not discuss. He is embarrassingly enthusiastic about England. He spends most of his time going down to the London museums, particularly the V & A. He has lots of minor symptomatology which does not add up to much, then suddenly he bursts into tears. He wonders if Prozac would help. I do not think so. He is lonely. He is worried about his mother. I spend far too long with him trying to work out a plan of action.

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Most of the morning is routine, but punctuated by phone calls from parents of hot children. All the appointments are gone, so the duty doctor has to decide who must be seen today and who can wait for Monday. Best not to be duty doctor on Friday. I cannot make a judgement about hot children over the phone, so I come out with my standard formula, “give him some paracetamol but if he doesn’t settle and you are worried, bring him down.” Sometimes they do, sometimes they don’t. Today they do.

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I am knackered by the time I get home, but I really want to read around on Lyme Disease. There is whole body of people “out there” who have chronic debilitating illnesses which they are convinced are due to Lyme disease. They are also convinced that the medical profession is ignoring them. There is an email which says:

“…I am one of the lucky ones to never have gone down the road of ME. It was only the fact that I worked with exotic animals that made my Infectious Diseases consultant consider Lyme because he didn't know it to be endemic to the UK. Of course, my diagnosis was 14 years ago and at that time my only support was internet US support groups. I only knew of one other UK Lyme sufferer in the first few years of my disease and he died in 1998. Not much has changed in regard to doctor's understanding of Borreliosis. My mother was bitten by a tick 2 years ago and developed an EM rash. Her GP gave her a course of Doxycycline straight away, which was great, but he said to her "you are what we term ‘a text book case’, IE, one you read about but never expect to see". He is now dispensing leaflets in his surgery.

Despite my having a diagnosis, I was still thought to have MS and later Motor Neurone Disease when my motor functions began to fail. My specialist didn't seem to know that Lyme could do all these things. He was convinced that only my arthritis was a result of the disease. MS and MND were later ruled out. I am actually infected with Bb. and Bg. as well as 4 other tick-borne pathogens.
I agree that the slate needs to be wiped clean. However, by doing this, in the case of Borreliosis, it can waste precious time doing various tests and the disease can get a better grip. Unless you are prepared to give antibiotics as a precaution then wiping the slate clean could result in a delay causing devastating damage to the patient's body.

I think it is easy for anyone from any category of illness to preach somewhat, but in this case, strong and bountiful evidence points to a large population of the UK being infected with one strain or another of Borreliosis and its associated coinfections.

I am lucky that my GP, specialist and community nurses understand my disease now.”

How can I ignore this? I need to know more.

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