So, have seen the surgeon (well, his minion, he wasn't actually there) and told him that due to my new job, I want to wait until next year for my THR.
Also went to see the GP and tell her of my decision and ask her how she could help me to cope for the next year.
I was met with an onslaught of 'I think you're putting it off' implying that I was somehow cowardly for making this decision.
Cowardly! I want to work, I want to continue to contribute to the economy, building my skills to enable more young people to have a chance to succeed at college and be successful in the future. I do not want to go on 'benefits', stay home and do nothing. I want to continue to contribute to society for as long as I can.
I ran through a list of options that I had previously researched, with her. She refused all of them. She also said that the surgeon had written to her and that they both felt I should have the THR now. On previous visits, she had said that she could easily help with medication to enable me to continue working for another 5 years or so.
She asked why I was putting it off and my reply was that:
1. I had a new job, a fabulous job and wanted to work at it for at least a year before I had the THR. It is wrong to take a role and then go 'off sick' for so long.
2. I wasn't impressed by the Physiotherapy offered to enable me to cope afterwards. A sheet of exercises and a set of instructions on how to measure my chairs to see if they are tall enough (not even a home visit) is hardly suitable for someone having a Left THR when their right leg is fully amputated. Physiotherapy should be planned and personalised to suit my circumstances, in conjuction with my prosthetics expert.
3. The local PCT will only offer Metal on Plastic and not the ceramic implant I would prefer.
She nodded at all this but made no comment.
She noted that my hip was very bad (one of the worst she has seen) and that I was a very stoic character. Well maybe, but if I want to continue to work, to contribute to society rather than be a drain on it, surely I can and expect the support of my GP to do so?
Apparently not.
She wouln't prescribe any further or enhanced methods of pain relief, suggesting accupuncture.
I already have purchased my own crutches to walk with (she said she would order some for me, but never did), I've bought my own TENS unit - no point asking for one of those, and take 30/500 codeine and paracetamol 4 times a day with 50mg Diclofenac 3 times a day.
They no longer work.
At night, it is like sleeping on broken glass, waking every hour or so as the pain from my hip is so intense. This is alongside the relentless phantom pain from my non existent leg.
I asked if she could prescribe something to help me sleep for a little longer; she said no.
I feel bitterly let down by the NHS. I wanted to work with my GP to plan my pain relief for the next year, so I could cope and work and have my THR next year, when established and financially, more secure.
This is surely a better way than going off sick for who knows how long, facing an unknown future as an amputee with a THR which may result in my being unable to walk as well as I do now. There are no guarantees with this type of surgery even with two legs, with one, it is very difficult to guarantee a good outcome. That would make me a drain on society, my family and friends.
One more year of work would enable me to be financially secure, and to be able to plan my surgery and recovery.
Surely, that is what the NHS is for; to work with patients to deliver the best outcome for each one?
Unfortunately, I was left with the distinct impression that now I had postponed the surgery for a year, I was on my own. The pain would be my responsibility, my own fault. Sleeping or not sleeping, my decision.
I'm not a drug addict, a fool or an idiot. I made a rational decision based upon my own personal circumstances and am being punished for it. And yes, I appreciate that the surgeon and the GP have expertise and knowledge I do not, but I do not think it is too much to expect them to work with me, in my best interests if that is what I, as a patient, decide.
Unless you are a private patient in this country, you can expect no help, support or guidance. You either do as you are told, when it suits them, or you are left to suffer. I cannot get private health insurance as my leg is a pre-existing condition, and anything that results from that (i.e. the arthritis) is exempt from cover.
I have found that there is a local Pain Clinic, to which I can self-refer. I shall do so but with little hope that an appointment will come soon.
So what do I do now? Find another GP, struggle on?
I have no idea, but I am angry at this, so I will find a way.
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