As I mentioned previously in this Blog, one of my reasons for writing is to describe the events connected with my cancer diagnosis, and crystallise my thoughts and emotions along the way. One day, I may want to have something to go back to in order to remind myself of how the chain of events unfolded and how I lived every step of the way. Something other than my medical records, something which includes my perspective on it, given that I was in the middle of it all.
Medical records are cold and pitiless pieces of paper. The correspondence between the doctors, the update letters addressed from the specialists to your GP, the histopathology reports. They tell your story without your permission, without including your perspective. Let’s have an example. The oncologist writes to the surgeon (who will be introduced shortly) in July 2014: "I saw Mr Gabriel in clinic today and he is making an excellent postoperative recovery”. Really? I say: "actually I still feel pretty sore and my shoulder movement is somewhat limited, I am pretty sure I used to feel a lot better before surgery, so you may want to drop the word 'excellent'!". The dermatologist, oncologist, surgeon, radiologist, histopathology consultant (and more specialists are still to come into play), they all write things about you which are going to affect the rest of your life without even knowing you that well (if at all), I find it preposterous! At least here I can add some more background, emotions and inject some life into my story of facing melanoma. It does not seem right to leave it to the doctors to talk about it in their brief heartless correspondence and reports.
Note that whilst I spoke ironically about medical records it is obvious that they are extremely important documents to keep and patients have the right to access them. Please refer to the bottom of this post for some information on patients' rights in relation to accessing medical records.
Back to my story, in June 2014. I have my referral letter (at the time of writing I have put together a large file with copious correspondence and reports!) from the dermatologist to see a surgeon, who specialises amongst other things in skin cancer. I arrange for a consultation as soon as he is available. I go to my appointment on a warm sunny morning and this is how a new medical professional appears on my melanoma landscape. He is cold and distant. But I immediately decide that this is what you want from a surgeon (so I try hard not to dislike him in spite of myself). Someone capable of performing major surgeries on patients surely must be a cold blooded distant person. If he was warm and empathic you probably would not trust his firm hand. He inspects my neck, does not compromise himself by saying whether my swollen lymph node may or may not be cancer, he simply lays out the next steps for me:
1. I will undergo a Fine Needle Aspiration (FNA) biopsy first. The FNA is a type of biopsy procedure in which a thin needle is inserted into the area of abnormal-appearing tissue or body fluid. The fluid and tissue extracted through the needle can then be observed under the microscope.
2. Should the results of the FNA be 'not conclusive' I will undergo surgery to excise the lymph node for full biopsy under the microscope. This is a relatively small surgery.
3. With step 1 or if needed step 2, we wil have the answer we need . If we can rule out cancer (either through FNA or excision) everyone's happy (especially I). Should the lymph node show melanoma, I will have to undergo lymphadenectomy, or neck dissection, which is removal of all the lymph nodes to the side of my neck where cancer cells were found, this is a major surgery not without risks and potential long term consequences. At this stage, this was really the worst case scenario.
Unfortunately I would go through all the above steps, 1. FNA ('not conclusive') 2. Lymph node excision (shows melanoma) 3. Neck dissection.
As a consequence I also learnt a lot about all these procedures so you are going to have to make good use of your patience, a very precious virtue to cultivate, as I have a lot more to write about in the next entries of this Blog.
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I wanted to spend a word more on the importance of keeping your medical records with you and the right of access to them. I have come across stories of people who do not have their medical records at home, maybe simply because they forget to ask for a copy when they visit the hospital and in some cases, when requested, the hospital then refuses to provide them, sometimes replying with patronising explanations such as that the patient does not need them or would not understand them. First of all we sadly understand them very well as we become extremely knowledgeable about our disease or condition. Secondly, it is only common sense that we should hold a complete file with our medical history. What if you wanted to go for a consultation with a new doctor for a second opinion? Surely we will need to be able to provide our complete medical history. And what about if you considered treatment abroad?
Usually under private health care it is easier to obtain the records, as long as you remember to ask the doctor or their secretary, then just make good use of your all so precious filing and admin skills! However with the NHS usually a formal request needs to be made and this is when often patients are met with resistance. So let's arm ourselves with some knowledge to ensure our rights are not compromised.
In the UK every patient has the right to have access to his or her medical records. This right is set out in section 7 of the Data Protection Act 1998 (which is not only about medical records but about any personal data of which a person is the subject). The Department of Health has laid out the guidelines to assists NHS organisations in England, through the process of dealing with a data access request. A link to the guidance is below.
http://systems.hscic.gov.uk/infogov/links/dhaccessrecs.pdf
The right to access to medical records may be limited or denied only in certain specific circumstances, for example when the disclosure of the medical record "would be likely to cause serious harm to the physical or mental health or condition of the data subject”.
Section 7 of the Data Protection Act 1998 allows the data controller (basically the person or organisation who has control over the processing of the data) to charge a fee for access to data. Currently the NHS charges fees (http://www.nhs.uk/chq/Pages/2635.aspx).
Medical records are cold and pitiless pieces of paper. The correspondence between the doctors, the update letters addressed from the specialists to your GP, the histopathology reports. They tell your story without your permission, without including your perspective. Let’s have an example. The oncologist writes to the surgeon (who will be introduced shortly) in July 2014: "I saw Mr Gabriel in clinic today and he is making an excellent postoperative recovery”. Really? I say: "actually I still feel pretty sore and my shoulder movement is somewhat limited, I am pretty sure I used to feel a lot better before surgery, so you may want to drop the word 'excellent'!". The dermatologist, oncologist, surgeon, radiologist, histopathology consultant (and more specialists are still to come into play), they all write things about you which are going to affect the rest of your life without even knowing you that well (if at all), I find it preposterous! At least here I can add some more background, emotions and inject some life into my story of facing melanoma. It does not seem right to leave it to the doctors to talk about it in their brief heartless correspondence and reports.
Note that whilst I spoke ironically about medical records it is obvious that they are extremely important documents to keep and patients have the right to access them. Please refer to the bottom of this post for some information on patients' rights in relation to accessing medical records.
Back to my story, in June 2014. I have my referral letter (at the time of writing I have put together a large file with copious correspondence and reports!) from the dermatologist to see a surgeon, who specialises amongst other things in skin cancer. I arrange for a consultation as soon as he is available. I go to my appointment on a warm sunny morning and this is how a new medical professional appears on my melanoma landscape. He is cold and distant. But I immediately decide that this is what you want from a surgeon (so I try hard not to dislike him in spite of myself). Someone capable of performing major surgeries on patients surely must be a cold blooded distant person. If he was warm and empathic you probably would not trust his firm hand. He inspects my neck, does not compromise himself by saying whether my swollen lymph node may or may not be cancer, he simply lays out the next steps for me:
1. I will undergo a Fine Needle Aspiration (FNA) biopsy first. The FNA is a type of biopsy procedure in which a thin needle is inserted into the area of abnormal-appearing tissue or body fluid. The fluid and tissue extracted through the needle can then be observed under the microscope.
2. Should the results of the FNA be 'not conclusive' I will undergo surgery to excise the lymph node for full biopsy under the microscope. This is a relatively small surgery.
3. With step 1 or if needed step 2, we wil have the answer we need . If we can rule out cancer (either through FNA or excision) everyone's happy (especially I). Should the lymph node show melanoma, I will have to undergo lymphadenectomy, or neck dissection, which is removal of all the lymph nodes to the side of my neck where cancer cells were found, this is a major surgery not without risks and potential long term consequences. At this stage, this was really the worst case scenario.
Unfortunately I would go through all the above steps, 1. FNA ('not conclusive') 2. Lymph node excision (shows melanoma) 3. Neck dissection.
As a consequence I also learnt a lot about all these procedures so you are going to have to make good use of your patience, a very precious virtue to cultivate, as I have a lot more to write about in the next entries of this Blog.
--------------------------------
I wanted to spend a word more on the importance of keeping your medical records with you and the right of access to them. I have come across stories of people who do not have their medical records at home, maybe simply because they forget to ask for a copy when they visit the hospital and in some cases, when requested, the hospital then refuses to provide them, sometimes replying with patronising explanations such as that the patient does not need them or would not understand them. First of all we sadly understand them very well as we become extremely knowledgeable about our disease or condition. Secondly, it is only common sense that we should hold a complete file with our medical history. What if you wanted to go for a consultation with a new doctor for a second opinion? Surely we will need to be able to provide our complete medical history. And what about if you considered treatment abroad?
Usually under private health care it is easier to obtain the records, as long as you remember to ask the doctor or their secretary, then just make good use of your all so precious filing and admin skills! However with the NHS usually a formal request needs to be made and this is when often patients are met with resistance. So let's arm ourselves with some knowledge to ensure our rights are not compromised.
In the UK every patient has the right to have access to his or her medical records. This right is set out in section 7 of the Data Protection Act 1998 (which is not only about medical records but about any personal data of which a person is the subject). The Department of Health has laid out the guidelines to assists NHS organisations in England, through the process of dealing with a data access request. A link to the guidance is below.
http://systems.hscic.gov.uk/infogov/links/dhaccessrecs.pdf
The right to access to medical records may be limited or denied only in certain specific circumstances, for example when the disclosure of the medical record "would be likely to cause serious harm to the physical or mental health or condition of the data subject”.
Section 7 of the Data Protection Act 1998 allows the data controller (basically the person or organisation who has control over the processing of the data) to charge a fee for access to data. Currently the NHS charges fees (http://www.nhs.uk/chq/Pages/2635.aspx).
This is a great insight into how you (the patient) views their medical consultation and medical professionals. I hope that people involved in the medical profession are reading this and taking note.
ReplyDeleteI was particularly interested in your comments about medical notes. I never really though about it before as I don't think many people read their notes. This was certainly never the original intention but like so many other things it will take time for the profession to change and take this into account when writing comments about patients. I'm certain no offence is intended these days when writing notes. It's simply that they are designed to give a clear and precise account of the facts which can come across as rather cold.
By the way, surgeons are well known for being cold and distant from their patients. That's probably why they prefer them anaesthetised!
On a slightly different note. Do you watch the BBC series 'Trust me i'm a Doctor?' I watched an episode recently which was talking about the benefits of sun exposure. In particular it's beneficial affect on blood pressure. There was not mention of the increasing rates of skin cancer in the UK. A little irresponsible I think as they indicated that most people should be encouraged to get more exposure! What do you think?
Thanks fro your comments Brian. I have now added more information on medical records and the right of patients to obtain them as I was shocked to come across people who felt they did not have access to their own histopathology reports.
ReplyDeleteIt may be the case that not all patients are like me (and I will admit to a slight OCD!) but I certainly read all my medical notes and keep them tidily filed, I think it's essential. Some details of my melanoma were never explained clearly enough to me by the doctors, but I then learnt them from looking at my reports and researching the subject.
I did not watch that episode of 'Trust me I am a Doctor', but it does sound very irresponsible and quite misjudged. I will try and catch it online.