I wrote the following draft sometime during the first week in April and kept it in my drafts folder. I am copying it here for future reference:
After a slight improvement for the first time in 6.5 years these past 3-6 months, I'm sad to note I'm sliding into relapse after carrying out a household task two weeks ago. My cleaner had emptied the contents of bathroom shelves into bathtub to clear the way. They weren't heavy items - mostly shampoos, toothpaste, soap etc. I thought it easier to re-arrange rather than going through with the cleaner where each item should go.
Once the point of relapse arrives, it's near to impossible to minimise it through complete rest because of having to deal with unexpected things, ie deliveries arriving, front gate left open by postman during a storm making it crash bang, and dozens of other tasks that crop up and can't be postponed until someone visits. When the last straw arrives, symptoms flare rapidly resulting in bad night's sleep, feel rough next morning, unable to prepare food... and so it goes on, having a knock-on effect throughout the coming days, weeks and even months.
The last straw, and what started to tip it into a full blown relapse, arrived yesterday in the shape of a new GP (my regular GP is on extended leave). Here's what I drafted over the following week - I am logging it here for future reference:
The purpose of this statement is for the record and to make a formal complaint in the hope that Dr B might read it. I hope it will give him insight into why I felt he was horrible to me on his visit, during which I believe I was calm, polite, courteous and quietly spoken and am not aware of having done or said anything wrong. I feel he owes me an apology and hope he will agree the practice ought to have a protocol on the treatment of ME/CFS/PVFS patients - particularly in regard to those who are severely affected.
Since March 2003 I have not been much beyond my front gate and most of the time have been too ill for visitors. I manage via phone, computer, mail, home helps, family, friends. In 2003, a specialist GP from the ME Clinic in Wareham, Dr C, visited me at home for a research project she was carrying out on people severely affected by CFS/ME. Dr C assessed my baseline as 15 minutes and advised me to rest for five minutes between every 15-20 minutes of activity.
By August 2005, after streamlining household/food tasks in order to carry out a six week strict rest regime (took me two years to organise) using a timer every 20 minutes throughout, I felt a slight improvement for the first time in six years, enough to be up to home visits from a dentist and doctor.
In November 2005, Dr A started visiting me every four weeks. I asked him if there was anything to help the muscle pain and stress, he said there was nothing - I agreed. He recommended Bach Rescue Remedy which helped a little (if only it could be 200% stronger!) so I paid a herbalist to visit me for a consultation but could not afford to continue after I'd started a trial of Q10 co-enzyme c£40 per pack + fish oil capsules @ £10-£20 + rescue remedy, plus Ketovite and Zincomed multi vitamin liquid.
Trying Q10 came about as a result of a paper I'd read by an ME specialist. Dr A prescribed me Ketovite and Zincomed and took time out to read the paper. Zincomed came about as a result of my asking about Magensium. Dr A felt Zincomed would be better. Among other things, Dr A helped reduce my high cholestoral from 8.1 to 7.1, arranged follow up blood tests and prescribed statens and HRT after a visit from the practice nurse.
After a few months, when I'd managed to stomach the vitamins daily and take them at correct intervals with food, I felt a slight but marked improvement: I was able to sit up and tolerate sun for 5-10 minutes each day and initiated several half-hour visits from aromatherapist X to see if it would help me build up to walks outside. I'd planned to ask Dr A on his next visit if a physiotherapist could visit me or if there was a way to prescribe aromatherapy visits on the NHS.
When Dr A did not visit me for two months, I phoned the practice for a renewal of statens, HRT, Ketovite and Zincomed and was told he was on extended leave, there was no telling when he would return. Since Dr A advised me to keep on with what I was taking, that I'd know if it was working when I managed to do something extra, like a walk outside, there was no need for me to see a GP. But they could find no record of HRT to renew, it had to be prescribed by a doctor in person, and arranged for Dr B to visit me at home the following day.
Upon his arrival at my front door, Dr B handed me two packages containing Ketovite and statens, for which I am grateful. He said he needed to go back to his car and return again so I offered to open the back gate for him (a big deal for me) to save him coming to the front door again. He rushed around so quickly, it took me by surprise and he talked so quickly, it was difficult to everything take in. Unlike Dr D or Dr A, his mind seemed hurried, like he was in a rush talking at me, not to me.
Dr B asked me questions about my being housebound and how I managed. I spent about five minutes answering them and told him my brain had already started to slow, hoping he would talk less quickly. It didn't take long for me to realise he was not really listening. As I don't often see a doctor, it made me feel disappointed.
Dr B then went off on a tangent about Disability Living Allowance, telling me about rumours and changes he'd heard and how he wasn't sure whether they were to do with long term claims or new claimants being stopped. When I told him he was shaking me up, he changed the subject without concern that he'd left me worried my DLA could be stopped at anytime even though I rely on it to pay for my home help.
When Dr B proceeded to write a prescription for the HRT I mentioned needing renewal of the Zincomed. He flicked through some of his papers and said he would not be prescribing me Zincomed. When I asked why, he said Zincomed is damaging but refused to elaborate. I asked him why Dr A would have prescribed it. Dr B became officious, snapping that the other GPs (he reeled off their names) at The Practice would not prescribe Zincomed either, implying Dr A was in the wrong to do so. Dr B's refusal to enlighten me as to what I had been ingesting, undermined and cast a bad light on Dr A which I found upsetting, unfair and disrespectful.
Instead of discussing an alternative to Zincomed or how its omission might impact on the trial, Dr B suggested anti-depressants and graded exercises and said I was not motivated enough to go out or get well. I was taken aback by such talk. I asked him why I struck him as not being motivated, he said he thought I was intelligent but not motivated as I lived alone with nobody to move me along (a family member I'd spoken to later on, said at this point I should have thrown him out). Although I'd not felt depressed and had no problems sleeping, Dr B gave me the impression if I refused to take anti depressants and go out for a five minute walk every day and see people (as if I did not want this for myself!) there could be no doctor-patient relationship between he and I. I felt he was bullying me into taking anti depressants.
Dr B spoke a little about what he knew about ME/CFS, its cause and something about the immune system, saying "chronic fatigue" sufferers who refused anti depressants and graded exercises and talked about symptoms were the 'negative' ones who never got well - even implying I was one of those. Since I'd declined anti-depressants he appeared to be telling me I would never recover. He had judged and tagged me as 'negative and not motivated' and was putting the burden of the illness on me, like it was within my gift to recover if I wished. His lack of understanding of severe ME/CFS made me feel worried about what he would be marking on my file.
It was demoralising for me to hear Dr B unfairly denigrating ME support groups and sufferers turning to alternative (non-NHS) practitioners in desperation of help. As an example, he derided one doctor for subjecting sufferers to injections of 'green stuff' (sorry this is unclear, his derisory tone and callousness took me by surprise). I don't know how I would have managed these past six years without practical help from volunteers, 25% ME Support Group and Dorset ME Support Group and help with the ordeal of obtaining DLA when it was turned down.
Dr B spoke of a young lad with ME/CFS who'd been ill for six years and became bedbound, needing his mother to turn him over. The way he'd described it made it sound like it was an unbelievable story. Also, he said something about the extent of my mobility being comparable to that of an 80 year old woman - like such a thing seemed ridiculous and medically didn't ring true. I could not understand why Dr B was telling me such things and, given my situation, found his lack of empathy disturbing.
Dr B seemed emphatic that if I took anti depressants and graded exercises I would improve. In other words, he was saying there was a treatment/cure that I was refusing and by doing so I was choosing not to recover. He more or less said there could be no doctor-patient relationship between he and I if I refused to take his advice. When I told him he was shaking me up and wished he could hear back what he'd told me and then put himself in my position, his response was to mutter something about being in a rush and not being able to stay long.
In an attempt to address my concerns, while he was here in person, I calmly and quietly told him I felt he'd been horrible to me. His reaction was to grab his jacket and case and storm out of the door in a fit of anger without a goodbye, slamming the back door so hard behind him it banged back open again.
In conclusion, I felt Dr B did not believe much of what I told him and he judged me. It is not for him to judge me or burden me with his ignorance and prejudices, I have a difficult enough life as it is. Clearly, he had no understanding of severe ME/CFS and showed no empathy or compassion. He referred to my condition as chronic fatigue - ME/CFS a neurological condition that should not be confused with chronic fatigue. Dr B got shirty when I declined his recommendation of anti depressants. I'd explained they were forced on me by another GP and did not work, they made symptoms worse - I was diagnosed with ME/PVFS by a consultant psychiatrist who advised the GP I was not depressed and to stop the anti depressants.
Dr B showed no interest in what Dr A had prescribed or the trial we'd been working on. After explaining to Dr B how I manage and keep occupied - knowing also he could see for himself I was not unkempt or living in a neglected household - I felt insulted that he saw fit to denigrate me as a person who was negative and not motivated. Going by his comments on MS he takes ME nowhere near as seriously. Years ago, they used to think MS was a form of hysteria too.
Dr B's visit lasted for about 30 minutes, maybe more or less, it's difficult to guess as it was intense, rushed and went by in a blur. He left me feeling in worse shape than when he arrived and worried about the future - that he'd tagged me as difficult, there was no hope as my bones and muscles would deteriorate to the point where I would never recover and become bedbound like the young lad he'd mentioned, and that anytime I could lose the DLA I depend on to pay my home help.
On hearing my version of Dr B's visit, a member of my family said the only thing that explains his behaviour is he thought I was a malingerer, swinging the lead - I agreed. It takes a lot of grit to manage and learn to deal with long term chronic illness (especially with one that is so contentious and has such a stigma) without becoming demanding and a burden. Aside from his rattling of my cage and making me feel worse than usual, nobody had ever stormed out on me before. Dr B's visit, not to mention the grief of its aftermath (this has taken me a week to put together) has set me back unnecessarily.
Please see attached papers (1) My experience of living with severe ME (2) 25% ME Group's Submission to DWP Draft Document V6 25 April 2005 http://www.25megroup.org/Campaigning/DWP/dwp%20info.htm