Another Set Back

Having been relatively surprised with the care I received from my first really caring GP, it should not have come as a surprise that life in the NHS would not stay all that rosy for long. Having said that, it would have been nice to have had slightly longer feeling all warm inside before another blow was dealt.

It took me a year and a half to see a gastroenterologist – I was not all that upset by the waiting time. I know that the NHS is stretched and things are tight – heck, I was just relieved to even be on a waiting list. I got several tests done, and hey presto I have 3 diagnosis to boot (it seems that us EDS’ers really do earn our stripes) – oesophageal and gut dysmotility and a hernia. Nothing particularly surprising really – I struggle with things like dysphagia, regurgitation, the feeling that my oesophagus just won’t push things down (liquids and solids alike), pain and getting full after mouse sized portions (somebody really needs to make my oesophagus stomach sized… design fault me thinks) pretty much every time I eat. Its frustrating on my good days, and makes me want to rip my hair out on my bad days – but I am all good with pretending to look normal whilst holding regurgitated dinner in my mouth before forcing it down for a second go.

The last appointment I had was results day. The guy was nice enough – pretty pushed for time, so gave me a very quick take on things which didnt give my head much time to process. He decided on a treatment plan, and told me he would see me within 3-4 months time, and even had his nurse book me in an appointment there and then, just to be sure. In the mean time, he gave me a list of things to try before we met again – where he would shift things, look into medication etc in order to get things sorted. All fine(ish) – at least we were going to do something and hopefully work on getting my digestive tract back on track.

Imagine my surprise then when I opened an ominous looking envelope a few days ago that simply stated ‘You’re appointment to see Dr X has been cancelled as he has discharged you from the pathway’. After an initial outburst of profanities and tears of sheer panic for an hour, I pulled myself together enough to ring the hospital and ask what on earth has gone on.

The receptionist then proceeded to explain how Dr X had made a ‘typographical error’ and I should never have been offered a follow up appointment. This would have been easier to believe had he not reiterated several times that I would be seeing him again, made his nurse book me an appointment before leaving the hospital and hadn’t sent me a letter following the last appointment detailing out the treatment plan – including the arranged next appointment. I pointed out these little details to the receptionist who promptly told me ‘If you want to discuss this further, you’ll have to go back to your GP as you are now formally discharged’.

Helpful.

So, having calmed down enough to book in another appointment with my GP for Wednesday, I got home yesterday for a second letter of insanity – this one explaining my discharge – surely someone aught to at least post these the right way round? This letter, if it is at all possible, makes even less sense then the former. So much so that I am pretty sure I could have won the award for Best Confused Face of the Year.

Not only does it mention the good old ‘typographical error’ that was ‘greeted with the impression that she will be reviewed again’, it also says: ‘I outlined in the last paragraph my recommendations on the cumulative strategy that cannot improve her symptoms and I therefore do not feel that it is necessary to follow her up’.

Not only does the last paragraph of the letter he is referring to mention nothing about his recommendations on his cumulative strategy (it actually talks about a referral to Stanmore) – but apparently the strategy was a totally pointless (fictitious) exercise anyhow.

Nothing that he wrote made any sense at all – but I am now left essentially having been labeled as untreatable before anybody even attempted to help. I am left still struggling to swallow enough to get in adequate nutrition, still getting worse as time goes on, only now with extra labels attached. I am painfully aware that even if I manage to get a new referral in place, it will take months, if not years to see anybody – and in that time, I am left to deal with this totally alone.

This is not help. This surely qualifies as a form of torture in some countries? I am fighting every single step of the way to get help for conditions that I have actually been diagnosed with. I naively thought that getting the name was the hard part, but with EDS that battle does not stop. For whatever reason, we have to push and push, and fight and fight just to get appointments or treatment. This continuous battle wears you down and leads to you getting sicker and more exhausted – it is a downward spiral into god knows where.

I am sure most issues are funding related, but a little bit of humanity wouldn’t go amiss. These letters made me feel like I was in the wrong. That I had created false memories, or had made up what I wanted him to say. It would be far more respectful to have received correspondence apologising for the change of plan, with maybe even a suggestion of what to do next, rather then just dropping a bomb shell and running. Humanity costs nothing, but can make the difference between leaving a patient distraught and suicidal, or leaving them able to face another fight and push for the care they need.

For me, I have no idea where this leaves me. Having spent 12 years of my life engaged in an eating disorder, oesophageal dysmotility seems a particularly cruel joke from the universe. I am desperate to get it sorted, but I have no where else to turn. I can not afford private health care, and the so called specialist is now out of reach. I am left to wait – for what I am unsure.

I would give anything for a working NHS right now.

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