Illegitimi Non Carborundum

(The lovely work of DolphinMoonCreations on Etsy.com)

I figured the NHS was a subject I would have to tackle eventually. Judging on those I’ve spoken to I don’t think I’m the only one maintaining a peculiar love-hate relationship with it as an organisation. Whilst I understand some of this will not be relevant to readers outside the UK, I do intend to round up with some general tips and tricks I’ve found beneficial which will hopefully be of use across the board.

So, why the love-hate? I think as with so many other things in life experiences with the NHS are all a matter of luck. My experience has been frustrating but I would say mostly positive – I know others who have not been so lucky. One of my ideas for this blog was to ask for guest posts, or links to posts elsewhere (I have a couple of friends with blogs of their own on here) about others experiences, so that will give a much wider appreciation of the NHS’s role in dealing with chronic illness.

The main negative I’ve come against is the utter lack of communication between the many parties I’ve ended up involved with. To say that the NHS has a central hub computer system, the right hand still spends a lot of time blissfully unaware of its left counterpart.

My road to getting diagnosed with Interstitial Cystitis best illustrates this, so I’ll put the Fibro aside for the present. I had several visits to hospital within a two month period last year and in the run of regular tests I showed up as having a UTI every single time – even straight after finishing a course of antibiotics. Five courses of increasingly strong antibiotics later and I still seemed to be the only one involved thinking there had to be something more to this than a particularly stubborn infection.

The key for me was that I had three actual UTIs in 2010, and this didn’t feel like those. It was certainly similar in some ways, but with enough difference for me to have my doubts in the constant “oh, it’s just a new infection” approach.

If a friend hadn’t made mention of an acquaintance of hers with Interstitial Cystitis, I think I’d still be on an ever-rolling course of antibiotics to this day. In doing some digging of my own on the internet (I don’t always recommend this approach, and I’ll elaborate further later in this post) I found a condition that in many ways behaved similarly to a UTI, but was in fact a different thing altogether and unresponsive to antibiotics. Bingo.

Armed with this, I made my next trip to the GUM clinic at Sheffield’s Royal Hallamshire Hospital and spoke to a specialist there, having become sick of my obstructive, deaf-to-all-but-the-simplest-answer GP surgery. After explaining the situation to the doctor on duty there, she immediately drew up a referral to Urology to send to my GP. Who promptly lost it.

To cut a somewhat angry and frustration-filled story short, it took me changing GP surgeries and raising the issue again before I finally got my referral to Urology. The new GP listened to me talk through the situation to date, and to my delight responded without argument and with a reassuring “don’t worry, we’ll find out what’s wrong.”

That particular story ends quickly and happily – Urology diagnosed me in five minutes flat with a mild case of IC, put me on a trial course of Amitriptyline and directed me to the IC Network website for dietary advice. I’m pleased to say it has caused very little problem since aside from the occasional flare up.

And so I come to my first more general point – if your GP isn’t listening, find one who does. I’m unsure if this transfers to other countries, but certainly in the UK you have the right to choose your GP. I cannot put enough emphasis on what changing surgeries did for me in terms of the road to diagnosis. The previous surgery I’ve gathered are a little indicative of the “old-school” – they don’t like patients telling them what they think is wrong or making suggestions, and it takes a sledgehammer to move them away from the assumption of the simplest, least costly option. Certainly there is no acceptance for the concept of “you know your own body”.

To my understanding, a GP should serve a gateway function in terms of accessing more specialist knowledge where needed.

Dealing with them was like facing up to Jörmungandr The Midgard Serpent as a guard dog.

(Amon Amarth's Twilight of the Thunder God
Who's a good doggy?) 

There’s a phrase which is popular amongst the CI blogging community, and that’s this one; being an advocate for your own health. I’m a firm believer that a good GP or specialist is a partner in your care – and if one half of the partnership isn’t pulling their weight, they need to be replaced. There are still things I feel patients can do too to ease the process too, however.

With long running conditions (particularly in the case of those which affect cognitive function) it can be difficult to remember what has been said previously, things which have already been tried or suggested and things as simple as whom you’ve seen before.

The best thing I’ve found is to keep a rough list with a rough chronology (mine is down to the month where I can’t remember a specific date) detailing who you’ve seen (GP, hospital department, specialist etc) and a rough gist of what was discussed and decided. Mine isn’t fantastic because I came to this idea quite late, but it’s a good thing to keep handy for when you need to see someone new.

Also keep a list of anything you’ve tried yourself, and how successful it was. If you have an appointment booked, make notes before you go about what you need to ask. It’s alarmingly easy to forget and get sidetracked once you’re in – you don’t want to have to go back twice to cover a point which could have been solved the first time.

An approach I’ve taken is to keep a symptom diary for specific things (I know, I can hear the groans from here). It seems to be the typical thing you are sent away with by a GP on your first attempt to raise a concern. But, if you keep a diary for a month and then take it to your appointment, you’ve beaten the first hurdle already and it’s much easier than trying to remember all the specifics yourself.

My new surgery in York are about to meet me for the first time tonight, and not in my most accommodating of moods. Calling me in regards to a repeat prescription request you’ve already cleared once (without looking at my notes) to ask why I’m taking my medication (...read the notes?) is not the most auspicious of starts.

Luckily for me (and unfortunately for them) I’m not the 20 year old who was still somewhat intimidated by doctors and specialists and did as she was told regardless of being quite sure it wouldn’t help. The one who didn’t argue or stand up for herself very much. The NHS and the chronic illness experience as a whole saw the back of her, in place of the rather more ballsy and self-assured 23 year old who knows much more about her body and what it needs. If it sounds like I’m spoiling for a fight without having walked through the doors yet...... well, when they called they didn’t know I had Fibromyalgia or IC at all. You can possibly see why.

Another experience of mine which helps illustrate the need for a co-operative GP was the period following my colonoscopy. Without going into horrendous detail, it was botched just about as badly as it could have been. Screaming, tears pain, etc. This left me with appalling internal pain for quite some time afterwards, and after collapsing unable to walk at home I ended up in A&E with a suspected ruptured bowel (thankfully not the case). The specialist there prescribed Tramadol as and when necessary until the internal trauma passed. Blissfully, it worked.

I made mention in For Freedom’s Sake that there were advantages to being 5’3” and tiny. There are disadvantages too... internal procedures illustrate a couple of them alarmingly well.

Anyway, I took this repeat prescription request to my GP surgery (albeit the old one) and this was refused on the grounds of “we don’t believe in using it.” Excuse me, what? All the relevant authorities clear it for use, a specialist who outranks you has requested it be prescribed and yet you “don’t believe in it”?

I’m an extremely peaceful person, but even I thought long and hard about sharp objects aimed in certain directions on that day!

I mentioned internet research and that I didn’t feel it was always a good idea. All I can really recommend is that everyone exercises caution and chooses their sources wisely. Wikipedia will have articles on most conditions – that doesn’t mean they’re going to be all that helpful.

(I make no apology - I love this thing!)

  

In my experience one of the best websites is Patient.co.uk– they give a good overview of symptoms, causes and treatments which strikes a good balance between information and fear-mongering. However, its key draw for me is the fact that medical professionals use and review it too. NHS Choices isn’t terrible, but it tends to list just three or four symptoms for each condition which are so painfully vague they could indicate anything from a poor night’s sleep to imminent expiration.

If you take nothing else away, for goodness sake stay away from Livestrong. Stick six inch red hot needles in your eyes instead. I guarantee it’ll be more productive and probably more fun too.

In short, things can be quite difficult enough without having to deal with obstructive medical professionals, and as many precautions as we can take for our own benefit there is no getting around that fact. Whilst it shouldn’t have to be, it is in some ways up to us to make sure we are listened to and can get the help we need.

If all else fails (fellow Malazan fans!), hire a sapper and make sure he’s armed with kittens.