Two became one! Hurrah! Well, apart from the deeply annoying Spice Girls earworm typing that has created. I'd throw in another hurrah but my brain is currently in some sort of mid 90's flashback. After tuesday's visit to an outpatients department that felt like walking through the door into the 1970's* this is probably a fitting, NHS inspired tour of the decades.
So, yesterday morning sense prevailed and a nice admin lady phoned to explain that not only was there no way of getting my notes to the two hospitals as patients are still absolutely not allowed to go anywhere near their own notes without applying in writing, but that they'd also booked me in with the wrong consultant so did I want to rearrange. I did and now I've got an apppointment with the nice rheumatologist in about three weeks time. The difference in the way the NHS performs when poorly paid, and generally poorly treated admin staff have the freedom to use their extensive knowledge and common sense organising skills is astonishing. Focusing on that kind of issue from the bottom up, allowing these excellent and dedicated staff members to suggest practical, locally based improvements would certainly improve both NHS performance and experience. However, no-one in government actually listens to me, or anyone else floating around the 'bottom' of the system because it's really far to important to impose top down, opposed by almost everyone, 'we promise we won't do this' reorganisations.
Only having to get myself to one appointment made a big difference to my day. I was able to fit in an early nap, cope with scooter hoisting in the rain, and having previously met Dr Breathe I wasn't overwhelmed with "they think it's all in my head" anxiety.
The other big difference was that yesterday's staff demonstrated how to communicate well with patients, in complete contrast to tuesday's experience. It's important to say that Dr Heartsink wasn't in any way unpleasant and although he said some rather odd things, there was clearly nothing behind that apart from a need for some communication skills training. In many years of accessing healthcare, both here and for a short period in the USA I have seen my fair share of outright crueltly to patients. Cruelty crosses a very obvious line, often created by understaffing and poor leadership, but its also very distinct from someone saying things that are really no more than a bit daft.
So, back to the 'how to communicate with patients' experience. When I arrived at outpatients yesterday there were a few people waiting, and shortly afterwards a nurse appeared to explain to people and write on the board that clinic was running 55 minutes behind. Anyone who's spent much time in hospitals knows this is either because the clinic is in utter chaos, or because it's running brilliantly and the consultant is choosing to give each patient as much time as they need, not the alloted time. Several people in the waiting room grumped and snarked about the delay, but I'd found the open staff wi-fi so was quite happy.
A nurse came to take me off for the weighing, measuring, blood pressuring ritual. When we got into the room there was no lock on the door and my sleeve wouldn't roll up enough for the blood pressure cuff, so my top had to be lifted over my head. So, without being asked, the nurse popped out, found another member of staff and asked them to stay outside the door. Just in case I was accidentally exposed. I was very impressed. When I had my bloods taken on tuesday the guy spent quite some time extensively scratching his balls before picking up the torniquet. My dilemma of whether to vomit on him or say something was solved by him putting a glove straight onto the scratching hand, but still. It's not really what you want to see a hand doing before it shoves a needle into your arm.
Measuring and examining over the nurse walked me the few steps back to the waiting room and continued with her work, part of which seemed to be popping back occasionally to check on the mood of the waiting room and keep people updated on the wait. The staff were keeping the waiting room updated after each patient came out, and at one point another nurse offered to make me a cup of tea. If you're a 'not yet disabled' person who's sat in a hospital waiting room and wondered why the occasional patient gets brought a hot drink its because well trained, caring medical staff can spot the patients who aren't able to go off and get their own drinks and often look like they could do with a good meal. Or patients who the staff don't want to let go off alone because it'll make them more poorly. Outpatients is a bit of an odd place to work as a nurse, you get judged by ward nurses as it's perceived as 'easy' but the potential for patients shouting is just as high as on a ward. What outpatients don't tend to get is the experience of much continuing care, so the nurses usually know any of the long term patients. In Dr Freak's clinic, the outpatient nurses usually greet me with a big hug, because of the gap between appointments they get to see patients conditions fluctuate in a way many other staff don't and so delight in any progress made, however minor.
There is a point to all this NHS fluffiness - I wasn't particularly anxious. And a patient who's not anxious doesn't carry that anxiety and negative expectation in through the consultation door with them, for it to then be projected onto a doctor derailing a consultation before it even begins. No doctor, however well trained can deal with decades of anxiety caused by other doctors being projected onto them, particularly when they don't even know the patient is anxious in that way.
So, eventually I saw Dr Breathe. We had a bit of a chat, well, one of us spoke, one croaked but you get the point. Unsurprisingly all my test results are ok. I can tell from the measuring results that Dr Breathe has a slightly relaxed definition of ok which is great, because it means not endlessly investigating things that are miniscule measurements away from the defined 'normal' in someone who's body doesn't do normal. Chest x-ray is clear, breathing tests mostly clear, and bronchoscopy was fine. I'd expected all that as Dr Breathe had been looking for something obvious affecting my ability to breathe and speak such as a stricture. So, that left us back where we started; laryngeal malacia issues caused by hypotonia. In normal person speak that means my larynx is collapsing on itself and my muscle tone is so poor the structures of my throat aren't properly held in place, move about alot and then interfere with my breathing when the soft tissue spasms as a result. Although there is nothing wrong with my lungs per se, the infections are caused by my chest muscles being too weak for me to breathe properly most of the time. When that happens all the natural secretions sit and hang out having germ parties in the bottom of your lungs. Its dangerous because if your muscles are too weak to breathe properly, they're often too weak to sustain coughing properly. The laxity of my tissues and obvious gap when I swallow witnessed by ENT means I'm also prone to aspirating food, liquid or saliva which is the preferred way for bugs to organise illegal raves in your lower lobes.
Some more croaking ensued about what to do when the muscles spasm so badly it cuts off my airway. I explained my clear preference was to hide at home avoiding hospital at all costs. Dr Breathe conceded he didn't have a better plan. There is no medication or surgery which can treat this problem apart from antibiotics for acute infections. The only possible source of help and improvement is specialist Speech and Language Therapy (SALT). I've been on the waiting list for that specialist intervention since Christmas, and without normal speech since October. Had I been in work say as a teacher or call centre worker and had to sign off sick after a week or so of this new problem I would now be six months into my twelve months time limit for contributory ESA, with no real sign of when treatment might be. Dr Breathe did say we could if I wanted try various inhalers but that he didn't think they would make any difference. Neither do I, and as I don't require the only difference they might make, which is the psychological semblence of having some control over the situation we both decided not to bother and Dr Breathe said he'd chase up SALT. Again. SALT was under funded during the New Labour years and not subject to the same kind of targets as being seen by a consultant, so although it's the only potential source of help for me the waiting list is indefinite.
What we did spend some time discussing was the requirements of the DWP to know about this particular problem, in black and white, preferably in triplicate. Not only do the DWP need to know what the problem is, but they also need to know that there is no medicine or surgery which can help it, and that its not going to get better. Hopefully it will improve, but with EDS there isn't an actual 'better' point and improvements tend to fluctuate over time back to not improvements. Dr Breathe is going to explain everything in a letter for my GP and rheumatologist so will include the DWP details and send me a copy to keep it on file for the next time my benefits are looked at.
I said my thanks to Dr Breathe and we parted company. I don't have to go back to see him unless something changes. Despite negative tests and the usual medical bafflement a bendy body causes, at no point did Dr Breathe make me feel disbelieved or negatively judged. He also understood the need to provide information for the DWP in writing. This means that I won't have to use up my time or his contacting him for a letter to provide to the DWP in a year or so's time when I'm no longer his patient and he's forgotten all the details.
Unfortunately just as I've shaken off the respiratory department I've fallen into the clutches of gastro-enterology and I don't think ENT are in much of a hurry to release me either. I'm very relieved Dr Heartsink thought it was a bad idea to stick tubes up and down a bendy person, but I do have to go through a barium meal and ultra-sound. I'm negative about this as I have previously been through the barium meal, ultra sound, head shaking, referral to dietician merry go round and have learnt as much as is possible from the experience about how to manage symptoms and maintain my weight. If it wasn't for the insistence of the DWP on reassessing everyone endlessly I might have had the confidence to have that conversation with my doctors and some of these tests might not have been needed.
What I do have is the confidence of almost a decade as a diagnosed EDS'ers, the knowledge and understanding that brings in terms of symptom management. I've had lengthy periods of time in this type of relapse, where I'm so extensively hypotonic that my body struggles just to perform basic functions. I've previously lost speech for a period of time, although in a very different way to this current problem I have managed to relearn to talk myself without support from SALT. It took several years of drudgery before I could see any realistic improvement last time, and this time round I can take comfort from not having to learn anatomy, physiology, medicine, physiotherapy and speech therapy alone, from scratch myself. This time I knew how to avoid becoming so weak that I had to spend months using a wobble cushion, adding 30 seconds on each day until I could learn to take one step more a day, and cope with the crushing disappointment on the days the steps only went backwards. This time I know I can do this, because last time I did it too. This time I know not to worry about being 'better' or 'fixed' because there is no such thing for people with EDS, but that there are improvements to be made, that eventually with enough time and effort life will get a bit easier. This time I know that just pushing myself harder and harder will never work, and that as much as I don't want to, I have to make this my day to day priority. That's dull and dreary at the best of times, but particularly galling at a time when finally potential opportunities to work may be on the horizon. This time I know that wanting to focus on writing, speaking and campaigning so much that I can't even bear to type out the alternative won't help. That I have to suck it up and spend alot more time looking after myself. That despite all my protestations of campaigning being just from home in my pyjamas so it's fine and not damaging my health, that I can somehow figure out how to work in my jammies from home floating on an oramoprh cloud...well, wanting something to be so does not make it true.
And really, that's why I don't want to have to go through more tests and hospital trips. With a long term degenerative condition such as Ehlers Danlos Syndrome, this is just the card life dealt me. I'd prefer to spend my time playing that card to the best of my ability, not having to go through hoops mostly to satisfy the Department of Work and Pensions insistence that people like me will be repeatedly and regularly reassessed. At the end of each of those hoops I get issued with exactly the same card, and life is just too short to keep going back, fruitlessly asking for another one. I just wish those making welfare policy actually understood that, but they had the good fortune to be dealt a winning hand in the game of life, and that winning hand means you can never understand what it is like to be issued with a losing card.
*In a nice way - it's a little on the tired side, but clean, small, friendly & staffed by very long term volunteers.