Susie

I want to tell you about my friend, Susie.

Susie has a rare blood disorder. This was diagnosed after an arduous process of months of blood tests and appointments with various doctors and other healthcare professionals. She now sees a hospital consultant every two months, has a nurse visit her once a week to check everything is in order, takes medication daily and has access to an emergency service should anything go wrong in the meantime [she's thankfully only needed to contact them once in the past three years]. Provided she keeps all her appointments and doesn't run out of medication, she survives. It's hard going, but with the treatment she gets she does OK.

Susie moved house a few months ago. When she moved she went to register with a new GP. At her first appointment she was told she wasn't allowed any more of the medication she'd been taking. Or appointments with a consultant specialising in her rare disorder. Or the weekly nurse visits which had proved so vital to keeping her healthy. There wasn't even anyone she could call in case of emergency. What she was told was, due to the fact she had moved, she was going to be treated as if she didn't have this rare blood disorder. Her GP might offer her a few tests, but if he wasn't interested or thorough enough to do the right tests, she would stop receiving treatment for her disorder and it would get worse. This could have horrendous consequences for Susie, including excruciating pain and extreme tiredness of the type that would leave her unable to do things for herself. Despite all this, her GP was adamant that she didn't have the rare disorder until he decided she did, which could be never. And until then she would not receive any of the treatment she was receiving before. She dared not protest too much in case he did give up on her altogether. None of her friends understood how her GP could suddenly un-diagnose her just because she'd moved house, none of us knew why her GP thought he knew more about Susie after a few minutes than her consultant did after working with Susie for a long time. None of us could grasp how all those blood tests and clinical notes were suddenly null and void - were the team she had previously all incompetent? Susie herself was terrified, she's felt the pain that happens when her condition goes untreated and she couldn't bear to envisage a lifetime of that pain with no relief.

Susie now faces a bleak future, for the time being at least. The best case scenario she faces is having to go through months of tests all over again, very painful invasive procedures. She's been through them all before, but her GP doesn't appear to believe any of the results so she'll have them all over again. At the end, if the GP feels like it, he will refer her on to a consultant, and she will get the nurse visits and medications as before. That's the best case scenario - her GP could simply decide not to do any of the tests at all after a simple blood count [which he's already done, she's just waiting to see if he feels like investigating further]. This will leave her in the position of either having to live with that debilitating pain or find ways to self-medicate. All because her GP is being such an officious prick that he refuses to believe she has this condition until he feels like it.

Shitty, isn't it? Why should she have to justify to this new GP that she has the blood disorder? Why should she have to go through all these painful tests all over again, when she's already been through them all before? Why should she have to deal with the fear of not receiving treatment at all? Why can't she just move house and receive the same treatment for her illness? After all, she hasn't magically been cured just because she changed address.


Thankfully, Susie doesn't exist. I made her up. Of course I made her up, that would never happen, right? Surely someone like Susie would move house, register with new GP, receive the appropriate referrals and continue to receive treatment as before. Of course they would. Unless of course, they happen to be receiving treatment for their mental health. I find myself in Susie's position, having to be reassessed by the mental health team here because they for some reason don't trust the past howevermany years I've spent under a consultant. They make the decision whether I receive support or not, they choose to acknowledge the shit I have to live with or not, they umm and ahh and discuss me at meetings and have the right to do absolutely nothing if they feel so inclined. They've so far offered me an initial assessment with a psychiatrist - to get a diagnosis. I already have several of those under my belt - what is it about psychiatry that no doctor believes their predecessor's word? The 'diagnosis' will determine whether or not I am worthy of any support whilst I reside in this locality.
And people wonder why I don't believe in psychiatry...

Won't it be wonderful if they tell me I've magically recovered just because I now have a different postcode! I can't wait - I think I'll throw a Recovery Party. You're all invited!