In the corner of the gym at my second hospital stood an incredible piece of kit – £250,000 worth of robotic walking machine designed and built by scientific whizzkids in Switzerland and one of only two in the whole of the NHS
At first I was very excited about this machine. It had been donated to the spinal unit by a charity and quite a lot had been made of it in the media. Online I read about my own consultant praising its rehabilitation effect for spinal patients and a case history of a lady with a cervical injury at the same level as mine who left hospital walking with crutches – much of her recovery being put down to this wondrous machine. As you can imagine, I couldn’t wait to have a go. Accordingly, when talking through my rehab with the physios, I broached the subject of when I might get put on it. I was told that it was ‘too early in my rehab’ and, given I had only been out of bed a few weeks at this point, I accepted this. Then I started to notice that out of the 32 of us in the unit at any one time, only two patients seemed to ever use it and they no more than once a week. The rest of the time this miraculous machine stood unused unless you count someone hanging a coat or jumper on it.
After a few more weeks I raised the subject of me trying it again. Once again, I was told that it was ‘too early’ but this time I pushed back and asked if not now then when would I be put on it. Hospital rehab is estimated to be about six months for someone with my injury and by now I was well into my second month – my fourth if you counted my adventures in ICU, the HD ward and not forgetting, the ‘gym’ at my first hospital. ‘What ASIA score are you?’ I was asked. ‘Um,’ I replied, ‘I have no idea what that even is,’ so my ASIA testing was duly arranged (which took another week fyi).
ASIA stands for the American Spinal Injuries Association which defined an internationally recognised way to score how neurologically impaired those with spinal injuries are. The scale ranges from A to D and is basically A = no sensation or movement below injury, B = sensation but not movement below lesion, C = sensation and some movement, D = sensation and more movement, E = normal (but only applies if you’ve HAD a spinal injury so don’t be going off telling people you’re all ASIA E after reading this. Luckily for you, you don’t qualify for an ASIA score at all).
More worryingly, before my test, I also read up on how they were measured. Imagine my delight to find out that remaining function was ascertained by – and I quote directly here – “light touch or pin prick or deep anal pressure”. It even introduced me to a new acronym – VAC – which apparently stands for voluntary anal contraction. So, basically I found myself waiting in my room for someone to come along and stick either a) a pin in me or b) their finger up my arse (hopefully just their finger. There were no guidelines given as to how far counted as ‘deep’). On the bright side, this service was at least free – in establishments in Soho this sort of treatment would probably cost a fortune. Not for the last time I waved my dignity goodbye and bon voyage.
My consultant duly arrived and, for once, his pessimism at my chances of any recovery worked in my favour since he came armed with only an official pin, presumably assuming that my VAC was going to be non-existent. I lay on my bed with eyes closed so I couldn’t cheat while he slowly stuck the pin all over me at differing pressures and I told him whether I could feel it or not. I performed so badly at this – ie that I could barely feel anything at this point – that he was able to keep his fingers to himself and I was accorded ASIA A status which defined me as a complete spacca.
I took my newly acquired ASIA A score back to the gym ready, once again, to apply to have a go on the wondrous walking machine. “Ah” said the head physio, “I’m afraid you’re too disabled to use the Lokomat. It’s only for those who are ASIA C and D who can really benefit.” Gutted, I wheeled myself back to my room, all hopeful visions of me gaining some much longed for advances in pieces and sat and cried for a bit. Then, remembering a piece of advice I’d been given about the NHS – namely, just make yourself so much of a pain that it becomes easier to give you what you’re asking for than to not – I grabbed my trusty iPad and got onto the Lokomat’s official website. Its introductory line on the homepage announced ‘Highly intensive physiological gait rehabilitation for severely impaired neurological patients’. I investigated how severely impaired ‘severely impaired’ was. According to the manufacturers of the Lokomat, it was suitable ‘for all ASIA scores – A-D’. I promptly wheeled myself around and went back to the gym. ‘Hello again’ I said. ‘Sorry to be a pain but I’m afraid I don’t accept that I am too disabled to use the Lokomat when its own website says that it’s suitable for all scores.’ The Head Physio looked embarrassed and stressed. ‘Look,’ he said, ‘If it were up to me, I’d put everyone on it but the powers that be have said what they’ve said and also, honestly, I simply don’t have enough people with enough time to put patients on it. The initial set up can easily take an hour and requires at least two staff. It’s not in my power to approve you going on it – you’ll need to talk to your consultant.’
So I booked a slot to talk to my consultant. The same consultant who had trumpeted to the press about how brilliant a piece of kit the Lokomat was. This took another week. I presented my case from the website and gently reminded him of his own enthusiastic words. ‘Fine’ he said. ‘You can have a go – talk to the physios to arrange it.’ So I went back to the gym again where I was told that they would let me know when they could fit it in. Another week went by. And another one. During this time I saw the sum total of one other person go on it.
Then….sorry, I know this is probably tedious to read but it really did unfold like this….I was told that the machine’s licence had expired and that it needed servicing and then re-certifying before it could be used by anybody. Otherwise, should the robotics go full Terminator on some hapless inmate, the hospital’s insurance wouldn’t be valid. Nobody could tell me how long that would take. In the end it was about another eight weeks and my discharge date was looming when I FINALLY got given the go ahead. I turned up for my session extremely excited about finally getting to stand up and walk, albeit under power. Harnesses were fitted, the robotics attached to my legs and hips, my feet put into the holders and straps adjusted to ensure the right angle and clearance. I even had a little computer screen that simulated a road that I could imagine I was walking along although you would have had to imagine pretty hard as the simulation was crap and the screen tiny. Instead I contented myself with looking through the big window into the Occupational Therapy room where the OTs were laughing and waving at me since everybody by this point was aware of my quest to get on the damn machine – probably because I hadn’t shut up about it for months.
My initial set up took about 40 minutes but, often, the time consuming bit is actually when the machine starts walking you and adjustments are needed for foot drop or speed or hip angle or your body just goes into huge spasms and that stops the machine and everything has to be re-set again. The Head Physio’s hand hovered over the big, red start button. “Are you ready?” he asked. “I bloody am” I answered. He pressed the button.
And I walked. Absolutely fine. We had to do a bit of adjustment but really, I just walked for 20 minutes. It was great to be up and to be moving and I felt so much better mentally. I did the whole thing with a massive grin on my face and then my hour was up and I had to be released from all the kit. My main physio did this and as she bent down close to me to undo the harness she told me ‘Well, that’s going to cause a bit of a stir.’ ‘What is?’ I asked. ‘You weren’t supposed to be able to do what you just did.’ she replied ‘They only let you have a go on the machine because they didn’t think you would be able to use it but you kept on asking so they expected it to all go wrong and then they wouldn’t have to put you on it again. But now as a C7 ASIA A, you’ve just walked better on it than any of the paraplegics we’ve been putting on so I don’t know what they’re going to do.’
‘What they are going to do in the short term’ I replied, ‘is put me on it again.’ I got two more sessions on the Lokomat before my discharge date. FYI it took one physio, after that initial set up, no more than 10-15 mins to get me in and out of the machine leaving me half an hour to walk.
I hoped that my experience might achieve two things – namely that I would be allowed to come back as an outpatient to use the machine maybe once a week for a bit since I had had to wait for almost four months to get on it and second, that my example might show the powers that be that they should try most of their patients on it and see how they got on. Neither of those things happened. I was flatly refused when I asked if I could come back and told it was ‘only for inpatients’ and, ironically I heard that it was used even less after my departure. A few years later I tried to help a rehab centre buy it off the hospital secondhand. Negotiations confirmed that the £250k machine wasn’t being used at all now and the rehab centre intended to make it publicly available to all – with a fee, yes but still better than it being shut away unused. Selling it would also mean that the hospital would get money to buy kit that they hopefully would use. It was all going rather promisingly and I had high hopes but the deal fell through when it was noted that the ceiling of the gym at the rehab centre was too low for the Lokomat to fit in. I promise I’m not making this up.
So, how to close this chapter? I have no idea where the machine is now but I suspect that, five years later it is still sitting unused in the corner of the hospital gym. No, I’m afraid I don’t have any idea why the spinal consultants arbitrarily decided only ASIA C & D patients could use it despite what the manufacturers said. I’ve even less idea why they didn’t change their minds when I, according to them beyond hope, hopped on it and proceeded to walk without any problem. And I’m utterly perplexed as to why, when we demonstrated that just one physio could easily get even me on and off the machine inside the allotted magic hour, they didn’t put more patients on it because there were plenty more who fitted even their own narrow criteria. In my six months at the unit, four people used the machine and I was one of them. I even suggested that the hospital charge outpatients to come in for sessions and use that money to pay for a dedicated physio to run the machine for them. I was told that insurance rules meant they couldn’t do that either.
Finally, I really feel for all the physios having to operate in this type of environment. I stress that they were absolutely dedicated and fantastic but they had to operate with one hand metaphorically tied behind their backs because of the operational insanity. If I have any advice it would be that there are now some fantastic private rehab centres available – should you or someone you love be unfortunate enough to sustain a spinal cord injury, if you can afford it, get out of the NHS system as fast as clinically possible and take yourself to one of them. You will progress ten times quicker both mentally and physically and in an environment that is upbeat, positive and pushes you to reach your potential.