Because I'm Worth It?

So first things first, I must apologise for not having updated my blog for such a long time, the past few weeks have been rather hectic to be honest. I will endeavour to catch up over the next few days but please bear with me.

 

On that note I will begin by going back three weeks to my visit to the new genetics clinic, an appt that had me more than a little stressed beforehand for several reasons...

 

When I was first diagnosed there were only a handful of specialist doctors dotted around the country who treat the kind of condition I have. The nearest to me was a Professor working in a hospital across Yorkshire. This would entail a 140 mile round journey for me but was my only option as most doctors I saw couldn't even spell the basic conditions I had a mutation of - which doesn't exactly fill you with confidence!

 

Although this Professor was an eminent expert on connective tissue disorders and has been published in journals all over the world, by the time I saw him he was rapidly nearing retirement. Sadly this meant that I never really got the best care I could have from him, as he was very obviously 'working his ticket'. On one occasion I travelled down at the crack of dawn in horrible weather then sat for 2 hours before being seen, yet this Prof didn't even lift his eyes from his desk other than to pick his break time snack when the tea lady rather rudely interrupted my consultation!

 

Thankfully the one good thing I did get from Prof was access to some fantastic Orthopaedic surgeons down in the same hospital group who, over the past 7-8 years, have done their utmost to keep putting me back together. I can't put into words the gratitude I have for these guys as without them I would undoubtedly be wheelchair bound and very possibly even totally housebound. I literally owe them my life.

 

Anyway, a few years ago I travelled down for my routine appt with Prof, where he was supposed to monitor and help me manage my condition, but had done little of the sort for several years. On this occasion however, I was taken in to see a young, general doctor who calmly informed me that Prof had retired and wasn't being replaced as the entire unit had been closed! I was then also informed that I would be referred back to a 'local specialist' and from that moment on was dropped into a very deep, dark hole called limbo.

 

In time I received an appt to see this new doctor, who was still based over an hours drive away. On the day in question we'd had some of our worst snow fall in years which caused havoc on the roads. We battled through and arrived only 20 minutes late, which was something of a miracle given the conditions. However, despite the majority of his patients having cancelled, I was still left until the end of the clinic before being seen, by which time it was 12noon.

 

When I was finally ushered into his room, this so called specialist was utterly clueless, very arrogant and had absolutely no expertise in my type of condition whatsoever - stating that he was just 'interested' and we could 'learn together'. He didn't even examine me because it would take up to much of his lunch break and bluntly told me that he would have just cancelled the appt in these conditions (I'd waited 6 months for it already). He then proceeded to suggest I do the very physiotherapy that I'd actually been doing since before he was born and prescribed medications that I'd already told him I was allergic to. Needless to say, I wasn't impressed and didn't go back!

 

However I still needed someone to help me manage my overall condition, treating the bigger picture not just the broken parts so to speak. So I started asking my GP for help getting referred to a doctor who actually understood these conditions and could help me. Unfortunately the number of such people had reduced even further and when I pushed for help in finding a new specialist, I was told in no uncertain terms that it was down to me and 'not his job'.

 

The frustration at not having anyone help me merged with fear of not having anyone monitoring and managing a condition that could cause my major arteries and organs to rupture at any time. Nobody I spoke to seemed to understand why I was so concerned and wanted help. My GP even blurted straight out that I wasn't worth the cost of referral as it's not like they can fix me! I sat feeling shell shocked that my own doctor had basically just told me I wasn't worth helping. He genuinely couldn't see what I would gain. He couldn't grasp the idea of support, peace of mind, reassurance and having someone with real knowledge to turn to when things go wrong. All he could see was the pounds, schillings and pence.

 

I felt completely worthless. I felt empty. I felt lost.

 

Late last year I was sent to see yet another useless, general rheumatologist who had no clue about my condition. He then compounded matters by lying to me, writing a parcel of lies in my notes and cementing the general 'worthless' opinion people had of me. I cried with sheer anger and frustration when I saw what he had done...and cried even more when I was forced to see him again. This time he proceeded to dismiss my condition and try to label me with something he hadn't even tested me properly for. All so he could throw pills at me & suggest I needed therapy! When I challenged him he got very rude and arrogant to the point where I actually walked out of his office.

 

Doing so didn't make him change his views but did shock him into doing something, as  he finally referred me to a new diagnostic genetic clinic. Sadly this wasn't what I'd been asking for as my pleas for help with long term care/management fell on deaf ears and he sent me to a clinic that just diagnoses not treats. Again I felt deflated and lost...but eventually decided I had nothing left to lose in attending the clinic.

 

And so three weeks ago I made yet another 2 hour journey to yet another hospital where I sat for an hour laying bare my medical and family history yet again. Thankfully the consultant and genetic counsellor I saw were both lovely, really listening, putting aside other doctors pre-judgements and taking on board my situation and struggles. The upshot being that they too feel it's impossible to pigeon hole me into one particular type of condition and strongly suspect I have a unique mutation. The difference is, they've taken skin biopsies to genetically analyse on several different levels. The results could take 4-6 months but I'm interested to see what they find.

 

However, as interesting and helpful as this appt was, I am still very much in limbo with regard to support and management of my condition. The frustrating part is, there's a clinic in London that provides a multi-level care for conditions similar to mine, with specialists in all the areas affected working together to give a 'big picture' approach to managing these illnesses. Sounds perfect doesn't it? Only problem is, it's not available on the NHS...only to private, paying customers. Regardless of whether I can afford this or not, I find it utterly despicable that people with debilitating, disabling and potentially lethal conditions who are reaching the point of desperation with their lack of care are being denied help because they're not rich enough. It is tantamount to playing God.

 

I apologise for this post being so long and for ranting, but I find it so depressing that people can be broken down to cost effectiveness and profit margins. Health care should be about doctors doing the very best they can to help their patients survive and thrive regardless. Every doctor takes the Hippocratic oath when they qualify, part of which states 'First do no harm'.... Surely putting money before humanity can serve to do nothing but harm?

 

There is something so inherently wrong here it frustrates, angers and scares me. But you know what, I will overcome this. I will fight and I will find a way to thrive, because that is what I do and quite frankly I am too damned stubborn to give them the satisfaction of making me feel as worthless as they suggest I am. My illness has taken an awful lot away from me already so I won't let the medical profession take what's left.

 

As a very dear friend of mine taught me: 'I am Perfect, Whole, Complete, Strong, Powerful, Loving, Harmonious and Happy!

 

Johanna H x