Tuesday, 28 June 2011

Getting Me Off the Books

Over the last 12 months I have had two different NHS teams try to discharge me.  I managed to avoid it in both cases, but it did make me wonder that if I was less belligerent what would have happened to me.

The first discharge attempt was made Spring 2010.  I had managed to control my periods with a contraceptive pill, that I can take indefinitely without worry of side effects.  This resulted in my gynae consultant telling me that my Endometriosis was controlled and therefore I should be discharged.  At this point, I spoke up and told him that when I said I was doing ok, what that actually translated as was that my pain levels were kind of controlled and weren't growing as fast.  I also told him that I was still taking lots of pain killers and therefore, by my accounting, I wasn't fixed by a long shot.  The consultant, somebody who's care I'd been in for around 9 years, listened to me and kept me on.

When I went back 6 months later, my adhesions were causing me all sorts of trouble.  I told my consultant that I needed surgery and I needed it now.  The pain was not controlled, in fact it was unbearable, and on top of that I could feel tearing inside when I had a bowel movement.  Instead of saying to me "let's book you in for surgery" my consultant surprised me by saying he didn't want to do it.  He wanted to transfer me over to an adhesion specialist.  I wasn't surprised about this, as the last time he had removed my adhesions it had taken him 5 hours.  He was afraid that he would harm my innards and I, for one, was pleased he had admitted defeat, even if I wished he had done that sooner and referred me to the adhesion specialist when the Endo was controlled.

My (soon to be ex) gynae consultant wrote a strongly worded letter to both my GP and the laparoscopy specialist he wanted me to be transferred to.  He couldn't refer me directly.  My GP had to do that.  How crazy is it that a very senior surgeon cannot refer to other specialist but has to go via the GP.  As a result of the strongly worded letter I got in to see my new consultant quite quickly and I got surgery this April.  In a space of 12 months I had gone from managing ok to requiring urgent surgery.  My bowel had become twisted and was wrapped in adhesions, which was why I felt tearing inside.

I was quite surprised when I went for my post surgery follow up, to be told that I was going to be discharged to the care of my GP.  I was also told that the new pain I was experiencing was probably just the scarring from the surgery settling down.  It was very unlikely to be adhesions.  I didn't argue with him on that point, as sometimes doctors just won't be told by a patient that they are talking out of their backsides.  I know my body and I have had this type of surgery before, I know what adhesions feel like and I know last time I had this surgery, adhesions were starting to form within a couple of months of the surgery.

Instead of arguing about the adhesions, as I wasn't going to ask him to do anything about them yet anyway, (there is no other treatment apart from surgery and with every surgery there is more risk of adhesions) I argued against being discharged.

I pointed out that my last situation had escalated very quickly and I wanted to be able to contact the department immediately and request an appointment, rather than trying to make an appointment to see my GP, get them to refer me and then wait for an appointment with the specialist.  I argued that I had never pushed for unnecessary treatment and that when I requested it, I invariably got knotted insides that resembled a basket of yarn after three kittens had played with it for a couple of days.

I won my argument.  I am staying in the system with an appointment set for 12 months time.  I'm hoping I will be able to postpone the appointment when it comes around but I want to know that it is there if I need it, and that I don't have to fight with my GP to be referred to the correct department.

Sometimes you have to know which battles to fight.  I know my own body and don't think the doctor was correct when he said adhesions couldn't be reforming.  But if I had pushed the issue he might have thought I was a hysterical patient craving attention.  Instead I dropped it and pushed in a rational and calm manner to stay on his books.  5 years ago I would have been emotional and upset that I was being ignored and being cast aside.  Now I know to go to an appointment with a plan of what I want to achieve.  I know what battles to leave and which ones to fight.

If I hadn't fought to stay on the books of my gynae consultant I may have had to fight my gp for a referral and I might have been referred to a less experienced surgeon.  Instead my gynae consultant shortcut the procedure by a few weeks.  I wish he'd done it months earlier but at least he knew me and my history and took me seriously when I told him I needed surgery and I needed it now.  I just hope that I can build up a similar relationship with my new consultant.

It does make me worry though that  many people are thrown back at the GP before they should.  I know that it is better to have people off a waiting list, but does it cost the NHS more for a patient to be able to ring a specialist in their condition for help.  Why is it better that a patient's first port of call is a GP appointment, which at my practice is nigh on impossible to get, to see someone who doesn't understand the condition fully?

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