Friday, March 14, 2008

Travails of the NHS

Multi-disciplinary teams (MDT) are the means by which the NHS seeks to eliminate mavericks and make sure that patients receive the best treatment. The idea is that every new patient is discussed by a group of specialists and decisions are taken by several heads being put together.

Recently a patient with CLL appeared in a district hospital with a lymphocyte count of over a million. Prognostic markers were done and the patient was found to have a p53 deletion. The MDT was consulted and recommended that possible courses of treatment were alemtuzumab or leucapheresis. The local team instead decided to use CHOP. The following week the patient had a lymphocyte count of 1.2 million. The Hb was only 4g/dl. Again different members of the MDT recommended different courses of action. One consultant, who has an international reputation in the treatment of this disease and who chairs the committee that draws up treatment guidelines, again recommends alemtuzumab. He is aware that the patient has large lymph nodes, but the urgent element for treatment is the severe bone marrow suppression and surely this needs to be remedied before worrying about the lymph nodes. Instead, the local team decide on leucapheresis despite the low Hb and the patient dies while connected up to the cell separator.

Another patient, a young bodybuilder, appears with enlarged lymph nodes from his CLL. He too has a p53 deletion. The correct treatment is clearly alemtuzumab and high dose steroids. Because there is no specific budget for this, the case has to be put to the primary care trust (PCT). This group of public health doctors, GPs and pharmacists of course knows nothing about CLL. So they read the literature. "I have been reading about this subject for two hours" says one, "I am now an expert in the condition." "Campath is contraindicated where there are bulky nodes," says another. "Where are the guidelines recommending this?" asks another. My friend produces a recent paper and admits that the guidelines do not yet recommend this, but the ones in preparation will. He knows because he has the job of writing them. Of course a prophet is not without honor save in his own country. Eventually they are part persuaded and will pay for two courses of the drug.

Both examples of inappropriate bureaucracy hindering treatment.

Another example. The European Clinical Trials directive decrees that the same standard of oversight should be applied to academic trials as to pharmaceutical trials. So the MHRA dispatches inspectors to hospitals to examine the notes to ensure that the protocol has been properly followed. One famous hospital is taken to task because for one patient there is no record in her notes that she has been counselled about taking effective contraception during her chemotherapy. The patient is 73 years old.

A man from Zimbabwe has a blood test which shows a white count of 20,000 and a platelet count of 7. The cells are typical acute promyelocytic leukemia (APML) cells. This disease is curable if treated but he is in imminent danger of bleeding to death if he is not treated. This is explained to him, but he declines admission to hospital. The doctor realizes that he is probably an illegal and reassures him that he is not going to snitch to the authorities. He still refused to come into hospital. A week later his 'brother' brings him into the A&E department unconscious and then leaves him. He dies a few hours later; he has had a cerebral hemorrhage. the address his 'brother' has left is a false one.

I am so glad I no longer work for the NHS


Anonymous said...

No healthcare system is perfect and those that must care for large numbers and inhomogeneous populations are stressed the most.

I hope that those in the USA who clamor for "universal healthcare" read commentaries such as yours so they better understand what they wish for.

Chonette said...

Maybe I should not say this but reading this made me laugh. Last week I gave a talk at a PIF conference relating my patient experiences over the last 5 years, I was followed by the Chief Information Officer from the Department of Health who referred to my talk several times during his talk and then the Assistant medical Director of BUPA which also referred to me.
I learnt a lot during the day and although no one is perfect it was very encouraging to see how many people were working to make patient's influence and communications better with consultants and doctors in general, it transpired that GP surgeries are far better at using technology in communicating with than hospitals

Terry Hamblin said...

If you have one, please send me a transcript of your talk.

Chonette said...

You say: "I am so glad I no longer work for the NHS"
I very well understand your feeling over this, but you have done so much to give many of us confidence to educate ourselves and take control of our CLL, that the work you started will be continued by many of your younger colleagues with the same views and Rome was not built in a day, so lets hope things will improve in the years to come.
Thanks for keeping up with your writing.

Anonymous said...

Cautionary tales such as this make me oppose national health systems being imposed in the US.

I'm not sure why there is such a hue and cry over the 'failure' of the American health care system when it is in many cases the envy of the world.

Obviously other countries such as England and Germany are well-springs of innovation and genius. It is encourage such invention that I am leery of making changes.

Changing to a bureaucratic-run system will be made at the peril of the patient.

Thanks for these tales, so sad to read about.

Jane said...

Every time that I go to my local clinic I have an estimated 50% chance of being told something that is, basically, wrong by a ‘specialist’ (note parentheses.) It is frequently in the form of jargon that I would not understand if I had not spent a great deal of time over the last 3 years surfing the CLL net and learning the scene and nomenclature. That is before any possible treatment gets to the pricing stage.
OK, so how can I help to get the guidelines written, and published, and hopefully read and understood?
It is obvious from my contacts with other patients that either communications between medics and patients are woefully ineffective, or possibly even that some patients are being subjected to less than best practise.
It is not a question of a small number of patients requesting monies out of all proportion to their importance, but realising the money (add pain, fear, unnecessary suffering) that would be saved if the most effective treatment was used at the most effective time. I could also go on about the improvement to quality of life that would accrue from better counselling and support.
Dr Hamblin, you have brought CLL to the forefront of medical attention to the huge benefit of the patient community. We salute you. Any ideas as to how to effectively pressurise the system would be greatly appreciated.

David Arenson said...

The failures of bureaucracy do not mean that the US should not have a health care system that provides access to all, including those with preexisting conditions. Ignorance is not the province of the NHS alone -- I have heard far too many stories about bureaucrats working for health insurance companies in the US making ridiculous calls, denying treatment, not approving the right treatment or an appropriate test. Indeed, the bozos making these decisions in the US often have no medical training at all. Ignorance is ignorance, be it in the public or private sectors. Access to health care is a moral right in a civilized society. I am almost as sick and tired of those who use "bureaucracy" as an excuse to deny their fellow citizens coverage as I am of CLL.

Terry Hamblin said...

Reading Vance Esler's blog
lakes it clear that these disasters can ocur in any system of health care provision.

There are two problems. How do you prevent ignorant doctors killiong their patients? How to you give regulations so light a touch that you don't prevent good doctors from doing their job well?

Richard said...

I would be interested to hear your opinion on the latest UK Govt. health initiative which can be found on the 'Daily Mail' site via:-

Terry Hamblin said...

This looks like publicity for a practice that is already going on. It looks like it is an attempt to circumvent the labyrinth of clinical trial regulations