Our prolonged dealings with Calderdale Hospital have raised an important general issue about the right of patients to share knowledge of their condition.
To what extent should patients be encouraged or allowed to ask questions? We would hope that we are moving to a time when the patient can if s/he wants be fully involved with understanding what medical decisions need to be made. The Internet, used wisely, can of course help this process. We have have greatly appreciated the open approach followed by our GP and St James’ in Leeds.Â
However, in some of our dealings with Calderdale Royal, we so often feel that we are being regarded as disrespectful, ungrateful, not trusting or even insulting if we persist in asking detailed questions about Elaine’s treatment.Â
Here are some matters for which we would still like further explanation.
1. Elaine repeatedly told medical staff about severe problems with the stoma? Why was she undermined, almost treated like a recalcitrant child and not taken seriously?
2. We have now (17 months later) had it explained that bile was causing necrosis. However, we don’t understand why this happened with Elaine, and not other patients having similar treatment. Why was bile able to form and give Elaine so much discomfort with her stoma?
3. Why was this not explained to Elaine at the time?
4. Why were experienced and highly-trained nurses and medical registrars not able to recognise necrosis? Is this not in their training?
5. Why did the consultant leave it so long before examining the stoma himself?
6. Might the need to do an early reversal of the ileostomy have increased the chances of the cancer returning?
7. When patients have rectal cancer, is it usual to wait eighteen months before doing a follow up colonoscopy?
8. When patients have cancer, is it usual to go over six months between one hospital consultation in their specialist clinic and the next?
9. Elaine has complained at every consultation and emergency hospital admission about acidic defecation. Ever since she returned home after the operations in early 2005. At her recent meeting with the consultant (and subsequently confirmed on the web) it was suggested that acidic defecation is caused by mucus which she has since learned is an indication of cancer. This raises the question that the cancer remained present after her operations. Could this be the case?
10. Elaine is a rather unusual patient. She recovers from things unexpectedly. She recovers from serious surgery so quickly it beggars belief. She similarly succumbs to illnesses against expectations. Clearly, Elaine is one that doesn’t fit the mould. Has this in any way been taken into account when making decisions about treatment?
Unfortunately, formal complaints can easily be fogged over by bureaucratic dithering. It would be much better to seek answers directly from those involved, using approaches that are non-threatening, such as weighing together the positive and negative outcomes of a particular situation. Reading thse accounts, however, if I were you two, I’d be mad as hell!
Thanks Thling. These questions have been nagging around Elaine’s mind for a considerable time. And mine. It seemed writing them out would be a first step in working out how to proceed. We haven’t yet sent them in as a letter, and I think you have put into words some of our doubts about how we should deal with them. We have an appointment with the consultant on Wednesday where we will get the results of the biopsy, so maybe we may just try and get a few more answers at that time, and then review if and how we should proceed further with the issues the questions raise.
With regard to your list of questions:
Firstly, I would have thought that it would generally be considered a good thing for patients to have a clear understanding of their condition and treatment. If only because there is so much that patients can do themselves – in the form of diet, exercise etc – to help treatments work more effectively. Given this, shouldn’t a standard part of good medical practice be to give patients opportunities to discuss their treatment and ask questions about it?
However, your list of questions appears to have a slightly different aim. Rather than trying to understand your treatment more clearly, you are pointing out areas where your treatment and its associated procedures have apparently been less than effective in the past. And you are seeking explanations as to why.
Effectively, your list of questions is a list of complaints. And, if submitted, I suspect that it would have to be dealt with by the hospital’s formal complaints procedure. (At least, I imagine that hospitals have to have such a thing and I also imagine that, if they do, it will be a slow grinding bureaucratic process which will leave your questions still left unanswered – or not answered in a satisfactory way – at the end of it.)
I’m not clear why you wish to put the questions. If it’s because you feel that there were flaws in your treatment by the hospital and you would like to ensure that these flaws are corrected for the benefit of future patients then the questions are fine. Put them to the hospital and prepare yourself for the complaints procedure.
If, on the other hand, you are trying to clarify certain issues to help gain a better understanding of your condition and treatment then what you really want is another opportunity to sit down (presumably with the consultant and perhaps a hospital administrator) and discuss the issues in an informal setting. In that case, I think that rather than submitting a list of questions (which naturally sound rather accusatory) it might be better to submit a list of areas-needing-clarification.
Hello,
Elaine, it makes me sad and angry that all the correspondence we have had in the past regarding your problems may only now be answered. These problems should have been addressed months ago. I just hope that someone within the NHS monster will volunteer the truth for you, albeit with little comfort no doubt.
Love Nadinex