Sunday, May 16, 2010

There and back

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


alhi said...

I can understand your reluctance to be admitted to hospital but I think it may be the best thing you could do before the Prof retires: at least you will be under his care. Surely it would be worse to potentially have to go into hospital in the future under the care of another Dr with no expertise in EDS? The physios and occ health people may be really useful as well if they work with bendy people a lot. The stay may also benefit your DLA claim.

Becca said...

BendyGirl, I spent a month on the rheumatology ward at Chapel Allerton a couple of years ago. I think I can probably put some/most of your concerns at rest. It's not at all like any normal hospital stay. Would you be up for talking about it via messenger or something?

BenefitScroungingScum said...

Alhi: Thanks, I know the week would be worth it in some ways, though I don't think it'd make any difference to DLA etc. The main problem is that I'm so, so phobic of staying in. I'm just not sure I can hold it together mentally if I do...particularly in the run up to it. I'm usually pretty laid back about stuff, but I nearly had a panic attack last night just thinking about the idea of a hospital stay.
If it wasn't Prof Bird's team there's simply nothing that would ever get me into hospital unless I was so ill I wasn't in a position to be able to think about it!
Ah well, I'll see how things go over this next week before making any decisions, thanks hon

Becca: Thank you. I know other people who've spent time at Chapel Allerton and that the staff are very different from other places. The problem isn't them, or any specific concerns as such, it's me having become so phobic I can't be rational about it. This situation happened a few years ago when I was supposed to be admitted, and in the few days running up to it I lost it so badly I just couldn't go. Overall I have to think about what benefits me the most, and I'm just not convinced admission is in my overall best interests as the psychological problems would be far more disabling than any physical. It's a tricky one!

Casdok said...

Sounds like a very tough decision to make. Im sure you will make the right one for you. x

Ellie said...


I have just been diagnosed with mild hypermobile EDS - 1 appointment and a few tests later and a letter in the post and that's it: I've EDS. I am living in that pseudo-happy bubble where you say the words but you don't really deal with them and I am scared too, but I honestly think the devil you know is better than the devil you don't. I knew I had EDS before they told me, my sister has it, but I hid from the Drs (can you believe I had to make an effort NOT to get diagnosed?) until I was seen for something I thought was unrelated and they got me. But now, I'm glad they did because all the things that were happening to me that I kind of knew what it was suddenly I wasn't alone with anymore.

I hope that helps. x

BenefitScroungingScum said...

Casdok: Thanks x

Ellie: I'm glad to hear you've been diagnosed, I can sort of relate to the efforts not to be diagnosed as it's happened in my own family.
I do understand what you mean, I felt very much that way back when I was first diagnosed. That was over 5 years ago now and whilst it might sound a bit arrogant (I hope it doesn't!) I've done all the research, coping and coming to terms with living with EDS that I need to. The spine issue is slightly different as in reality I have to take great care with my back as it is, and that won't change whatever the results of a scan. I know there is a risk of spinal cord involvement at any point in my life, but beyond that I'm very sure I'm doing the right thing for me by not wanting to know. There isn't anything additional I can do to prevent such problems so I don't want a certainty blighting the next however many years, I'd rather deal with it if and when I have to.
Having said that, had I been able to cope with the psychological part of an inpatient stay in the year after I was diagnosed I'm sure it would have been hugely beneficial, but I'm now at the point of looking to turn all this knowledge and skills into a role where I can help others to do the same.
Best of luck with your journey, it's a bit of an emotional rollercoaster in the immediate aftermath of a diagnosis but hopefully less so if your sister is already diagnosed. I hope my family follow your example before it's too late for them. BG x

frogpondsrock said...

How about a compromise of three days in hospital my sweeting? That should give them enough time to do all the MRIs and everything. Bendy cat will cope for three days. And you know that eventually you will need to have all these scans done anyway so you may as well just suck it up and get it over and done with now.

(((hugs))) to you

Achelois said...

I was around last time an in patient stay was suggested BG. I understand.

If I say this would it help. I haven't had any of the rheumatological attention I should have had (my decision as you know historically) either from a specialist in EDS or non- rheumatological specialist who may or may not have a special interest who just look it up quickly in a book!

I am 45 nearly 46 and trying to face up to bowel and bladder issues which I know need attention. The cause is not irritable bowel I know. My feeling is that the cause is the same as yours. I am trying to pluck up the courage to blog about them and even ring the gp sooner rather than later to find out things I don't want to know. I feel I have left things too late.

If you went - and I know I suggested this before - could you stay at night in a local premier inn by way of compromise. This would help you to feel in control. Also by going sooner whilst Professor B is still there there should be an element of trust. This is not going to be the same awful experience you had before. Also whilst it was tiring would going daily be an option - on alternate days getting someone else to give you a lift then driving the other days - with the option of staying in a premier lodge type place as an option if you are too tired. That way bendy cat would see you at night.

BG - the alternative is a merry go round of appointments and tests that you will have to endure with the possibility that the people doing them won't really understand your condition as they do at Chapel Allerton.

Just do it. You know you can. If you can do the med withdrawal this will be a breeze and temporarily beta blockers or similar would cope with the hospital related anxiety. I know only too well your previous experiences and the reasons for the lack of trust. There will be no invasive procedures here and long term it is in your best interests. Bendy cat will survive and so will you.

I honestly think that getting the scans etc done in a setting which is like chapel allerton is better than any alternative.

Bendy cat will cope and so will you. Please don't talk yourself out of it and just make the call to say - yes I will and yes I can.

love as always - don't be scared we will support you.


frogpondsrock said...

There now both Achelois and I have told you to go to hospital.So listen to your cyber-mothers. xx

BenefitScroungingScum said...

Kim & Achelois: I've just spoken to the Prof's secretary. Unfortunately staying somewhere else in Leeds for the duration of an admission is not possible as it means they have to arrange appointments as an outpatient so different waiting lists, times etc. Seems silly as many patients have become hospital phobic and want to stay elsewhere, also removing the cost from the NHS of overnight beds but bureaucracy wins out again.
I also asked about the possibility of just staying a day or so, but there's no guarantee they could arrange the scan in that time, and I've ended up stuck on wards for periods of time before now whilst scans are sorted out.

I am currently having expert physio so very happy about that side of things. I did discuss the admission with my physio who agrees that beyond the MRI scan there is no benefit for me personally in being admitted. Like Achelois I'm not a fan of bracing and don't do well with those kind of adaptations so there is little to be gained by seeing the OT's in Leeds. Unfortunately should there be any benefit it would be lost as when I come back to my area as I still won't qualify for those types of supports so it seems both pointless in terms of stress and not being able to continue anything started once I'm home.

However, the good news is that outpatient waiting times for MRI scans are only 4-6 weeks at the moment which should mean I can be scanned at Leeds and have the results read there before the Prof retires. That was the only part of the admission I felt should really be done so now I'm feeling much happier as that can go ahead on an outpatient basis.
Hope both my online mum's are happy with that compromise too ;) Lots and lots of love to you both xoxoxoxoxoxoxoxoxo

steph said...

Firstly, I'm completely bowled over by you driving yourself to Leeds. Talk about mind over matter!

If you can do that, then I believe you can surmount anything, including your fear of hospitals.

I understand your dilemma but do you really think that Prof Bird would recommend something that wasn't with your best interests at heart?

As hospital go, I think Chapel Allerton probably represents the best opportunity you'll get, to receive help under the guidance of an expert doctor.

The decision is yours and don't worry... no matter what you decide, I'll still be in huge admiration of you.

You are an expert patient after all!

Big hugs.

Everycat said...

Hello BendyGirl (& of course BendyCat)

What a dilemma. Our ape is phobic about hospital stays now and she sympathises with you on this.

If you decide to go to stay in hospital for your MRI, there are lots of simple things you can do that would really help BendyCat cope with you being away. Email our ape (addy in profile) and we'll make sure she sends you some good tips that work on us, when we get abandoned.

Whicky Wuudler

Arienette said...

As a non-bendy (although, I am bendy, but I am bendy with a 'little' B, not EDS-bendy or anything. Just annoyingly-flexible-bendy) who has been doing the Dance of Disablity with SS, DLA. hospitals, doctors, therapists, and GP's for the last 2 years, I can say that they would have to drag me kicking and screaming and biting and drugged to the eyeballs to get me back in as in inpatient. The last time I was in a hospital I was giving birth and the bastards messed my care up beyond belief, and the last time before THAT they tried to ninja-like section me by trying to trick my husband into saying I was dangerous. Then they reported me to SS. I am now so phobic of doctors and hospitals and Social Services that I have panic attacks just thinking about speaking to anyone medical about my care (my daughter is ok, I can kind of deal with that, but me? Not so much)
This has been a long-winded way of saying 'I get it'. If an admission won't actually, practically, do very much for your case, then there is no point. Stress will not make you any better, it will only exacerbate the problem. Stay home, sort out what you can how you can, and don't sweat the stuff that doesn't matter. Of course your spine matters and an MRI will be useful, but you don't need to be admitted for that.

My DLA is up for review in January I think. I feel a bit sick about it since I am no longer in touch with 'services' and have none of the same doctors or contacts so how I am going to prove that I still need it is beyond me. I gather bursting out crying and rubbing my tears on the forms won't work.