I made it to and from Leeds in one intact, if slightly battered piece. As expected my left shoulder and hip popped out before I was even in the car, but my injured right knee held up better than I had hoped.
The drive to Leeds was in the early afternoon which meant very little traffic and I arrived in plenty of time to chill out with a cuppa before going through to the outpatient department. Chapel Allerton is a lovely hospital surrounded by greenery which gives it a peaceful and friendly feeling despite it's proximity to the bustling city centre.
Once I was settled in the general rheumatology outpatient waiting room I amused myself by playing 'spot the bendy'. It's a fun game that all the family can play...just look out for the various forms of contortionist seating positions, constant wriggling, hyperextended joints wrapped round chair legs and a certain 'only bendy people have it' peach like quality to the skin. If you can't spot any of those features in a crowded room use the almond shaped eyes as a clue to introduce you to the others. I'm not sure if it's that we stand out in any crowd, that the nursing staff at Chapel Allerton are outstanding, or a combination of the two, but I was incredibly impressed by the nurse* who remembered me from last time I was there in January 2009 and came over to chat. Though, that could just have been a cunning excuse to spend work time watching children's TV with me.
Professor Bird's clinic was running uncharacteristically late. Waiting reminded me of clinic waits back in the late 1990's, before the then new New Labour government's funding increases had started to take effect. Then, after years of underfunding by the Thatcher/Major Conservative government, it was standard to wait at least 3 hours before seeing a doctor, and on many occasions clinics were so oversubscribed that patients would be sent away without having been seen, despite medical staff working many extra unpaid hours trying to fit everyone in. An hour or so after my booked appointment time a nurse came out to ask those waiting to see Professor Bird if they would like to be seen by another doctor, but all those waiting preferred to wait as long as it took, knowing full well that in anticipation of his retirement the Prof was giving each patient as much time as they needed rather than sticking to rigid appointment slots. This is the fundamental flaw in Chapel Allerton's long term plan to provide a specialist hypermobility service without a dedicated consultant with a special interest in hypermobility to lead it. Patients travel to benefit from that person's specialist knowledge, and PCT's pay an additional premium to fund it. Perhaps if Chapel Allerton took better care of their finances they would realise that there are significant funds generated from 'out of area' referrals to be collected from the Primary Care Trusts which would mean a hypermobility service generated revenue for the hospital. Without one consultant in overall charge of the service, news will spread like wildfire throughout the patient community that Chapel Allerton are no longer providing such a specialist service and patients will seek that expertise elsewhere thus impacting adversely upon the finances of Chapel Allerton and overall the Leeds Teaching Hospitals.
As is typical of any 'bendy clinic' I've been to, before long one bendy person finds another, a conversation starts and more join in. I was happy to see that I'd correctly identified the right people playing 'spot the bendy' but saddened to hear how poorly informed others were about their hypermobility, especially as these were people at the less affected end of the hypermobile spectrum, who, with the correct information and life management advice should be able to live full, active lives but who were drowning and disabled more by that lack of support than their physical conditions. This is the kind of information and support clinicians are not really in a position to provide as paucity of time and resources mean they have to have a narrow, medical model focus. The gap is not currently being covered effectively by other specialties such as Pain Management, Occupational Therapy or Physiotherapy although they tend to have a little more time to attempt such advice. It's typical of the way services are funded in the UK, the NHS being separate from social care, which is again separate from welfare benefit entitlement, which is again separate from support or equipment provision. The end result is that patients fall through gaps in the system and the cost to individual lives and the welfare state is phenomenal compared to the cost of filling the gaps in the system by funding such support.
I had been feeling incredibly positive since starting this new type of physiotherapy, but my appointment left me feeling rather depressed. I'm so used to multiple dislocations and all the other fun which goes along with being a severely hypermobile person with a mosaic Ehlers Danlos Syndrome that I tend not to take much notice of it in my non blogging day to day life. It just is what it is until someone points out that actually, maybe it isn't. I'd prepared a list of all the current issues to be dealt with, which I wanted to have correctly documented prior to Professor Bird's retirement, partly because of the loss of his expertise and partly as I am anticipating the inevitable request for further information from the DWP when I come to do my Disability Living Allowance renewal forms over the next few months.
The list was extensive and covered issues such as the long term Oxycodone withdrawal I've been doing, my lack of co-ordination, problems with proprioception and ataxia, the problems with shortness of breath, larynx dislocations and occasional airway collapses, the state of my joints and concerns about the effect of increasing spinal instability on my spinal cord, bladder and bowel functions. Professor Bird wanted to see how long my joints were staying put once I'd relocated them which was demonstrated very effectively by my left shoulder which I had reduced at the start of that discussion and which had dislocated again before the end. I also reduced dislocations in both elbows, the other shoulder, had an attempt at reducing dislocations to both hips and reset my ribs and spine several times whilst we were talking. The main concern is obviously my spine as the instability there has far more destructive potential than anywhere else. The x-rays of my hips and spine done last year are showing some type of congenital deformity to my lower spine, but an MRI is required to see exactly what, and whether there is anything more than very occasional impingement occurring anywhere in the spine.
As there is limited time before Professor Bird's retirement he wants me to be admitted to Chapel Allerton for a week to have the MRI scan and to be seen by their Physiotherapists, Occupational Therapists and Social Workers. Admission has been suggested before but the way I was treated in hospitals prior to my diagnosis of Ehlers Danlos Syndrome has left me with a phobia of staying in hospital so powerful that even the idea of it makes me panic. I've not made my final decision about what to do yet, but as I'm panicked by the idea of it I'm not sure I'll be able to cope with the reality. There is also the question of what the benefits of such an admission would be and beyond having an MRI scan I can't find any. I already know I need to take great care of my spine, but beyond that I'm not sure I want to know. Should a scan reveal that paralysis or loss of bladder or bowel function is probable in the future then I definitely don't want to know. There are various options such as getting gynaecology involved, experimenting with oestrogen but in the years since being diagnosed most of these issues have already been explored teaching me the most important lesson of all; that a hypermobile body is best left to be a hypermobile body and that endless investigations or experiments with medication only result in more complications and disability. I feel the same way about Social Services, that any potential gain in terms of equipment or care packages are vastly outweighed by the disadvantages of having to deal with Social Services themselves, so much so that it is not an option I'd be willing to consider. The only real way for those with Ehlers Danlos Syndrome and many other chronic conditions to live a happy, fulfilled life is to be the person in control of their own treatment and management, and unfortunately hospital admission removes that control by it's very nature. There are vastly different waiting list targets for inpatient treatment than there are for outpatient treatment which often means a hospital admission is the only way to get investigations done in a timely fashion. This is yet another example of the bureaucratic web which cripples our public services, as people end up requiring costly hospital stays for investigations or procedures which only require admission to circumvent funding problems.
That, and the fact that I'm just a bendy heap of traumatised wimp who just doesn't feel able to cope with a week away in hospital, let alone find someone to look after an aged BendyCat for a week. BendyCat had Ben to cat sit her last time I went away, but was so distressed that by the end of the week it was a close call as to who needed valium sooner, Ben or BendyCat.
*auxillary rather than RGN