Saturday, 19 December 2009

The Dis-empowered Patient

My daughter has been suffering from vague ill-health for several years. Part of it is depression but she can suffer from extreme tiredness leading to lethargy and lack of motivation. It is bad enough that her employer is threatening a written warning if she is absent again. She has had some counselling and most recently she and the counsellor at her GP practice agreed that the tiredness is not psychological but physical; chiefly because exercise was exhausting her—not lifting her mood and lessening the depression.

She pursued a diagnosis of ME (Chronic fatigue syndrome) with her GP; he forthrightly said that he did not believe in ME (as there is no clinical diagnostic test) but nonetheless referred her to the ME clinic at the Heath.

At her first appointment the consultant rapidly ruled out ME as she does not suffer the muscle pain typical of the condition (though not all seem to agree with this) so he started to look at other possible diagnoses. He noticed that her vitamin B12 levels in her most recent blood tests were right at the bottom of the normal range so ordered more blood tests to double check. There is also a possibility that she has poly-cystic ovary syndrome so the consultant suggested more tests for hormone levels at the appropriate point in her cycle.

When she went to her GP to investigate another problem, she was given a letter inviting her to take a part in a research project to investigate sub-clinical thyroid deficiency implying that her thyroxine levels are low but not low enough to require treatment.

Last weekend she took part in the Blue Wave climate protest in London and was so tired in the evening that the friend she went to visit wouldn't let her catch the train back to Cardiff but she insisted that Carys should crash there for at least one night. She had improved enough on Sunday to come back and I picked her up from the station at 2030 or so. Unfortunately she felt too unwell to go to work on Monday or Tuesday (which is what has prompted the threat of a written warning). She had a follow-up appointment at the Heath on Tuesday afternoon. She asked me to accompany her to her appointment.

Ok, that's the back story.

What followed was a classic case of dis-empowering the patient and total lack of empathy. The first problem was that the consultant was not the one from the previous session. We were in a large teaching room with a central desk and a chair for the penitent (sorry–patient). This was set at the corner of the desk at a diagonal to the doctor's right hand. He was imposing, ruggedly handsome with a strong presence but no feeling of connection with the patient. There was a student in the room. She was not introduced but was sat (and I think I mean "was sat") about 2m to the left of the doctor and slightly behind. She took no part in the consultation except to smile at me when I met her eye. So I suspect we are talking about student dis-empowerment here as well.

He gave his name as Dr X but made no comment about my presence when my daughter introduced me. He had not read the notes before calling us in so we had sit patiently while he cursorily went through the test results. He didn't seem to read the narrative at all.

His reading of the results was that there was nothing clinically wrong. He didn't mention the hormone tests at all. He actually used the term "tired all the time"; I believe that TATT syndrome is medical shorthand for "malingering". He was sure that the tiredness was the result of the depression and completely dismissed the conclusions reached by her and her counsellor. He did order a few more blood tests.

We both left the room feeling short-changed. Attempts to start a discussion or ask questions had met with a brick wall. He was not at all interested in whether anything had changed in the 9 weeks since the first appointment at the hospital, for example she had intended to raise matters of bowel movements.

Since then she has had an initial consultation with our chiropractor, with whom we have a long-standing, trusting and friendly relationship. During the hour-long initial consultation Louise was able to offer another suggestion—Syndrome X which is connected to PCOS. Looking at the symptoms that are said to be characteristic of this collection I would say that I also fit the profile (apart from the problematic ovaries!), as does one of my sisters.

We have been researching Syndrome X and we have made the decision to try to change our diet to avoid hyper-glycaemic foods. We recognise that Syndrome X is not universally accepted so we will continue to research it before approaching our GPs.