"Waiting to see a consultant"

Was stopped by the police walking back across the motorway services carpark with a coffee. They asked me if I’d had a drink. And then required a specimen of breath. Then demanded a drug swab. Both of course were negative. The officer kindly suggested I really needed to see my GP. I assumed my difficulty in walking after being cooped up driving for hours was the result of getting older and a touch of arthritis. GP had a poke around my legs and referred me to Neurology.  Cue nerve conduction tests, spinal fluid analysis, MRI scans of brain and spinal cord, the works with and without contrast and finally genetic testing with his opinion it was most likely spastic paraplegia with an unpredictable but almost certain degeneration. Thanks.

Gabapentin, Baclofen. Tizinidine in increasing quantities as symptoms got worse and worse. Baclofen made matters worse so that got ditched. Three years later and I feared for how much longer holding down a physically demanding job was going to viable as stairs now had become a serious trial as was walking which had degraded to a slow waddle. So, was referred to have a Baclofen pump implanted to deliver the drug directly into the spine. Was sent to the wrong waiting area and by the time some helpful soul came to my aid some 2 hours had passed - long delays are par for the course and hardly unusual hence by patience - and I was directed to the correct waiting area designed to go back to the end of the waiting list for complex rehabilitation.

Luckily for me, the consultant I was seeing was an Angel in disguise and kindly saw me after her last appointment of the day. I thank my lucky stars for that break. She did a thorough physical examination - the first I’d had. Called her students in. Did a lot of technobabble to them, told me she was going to send me for some x-rays there and then and said with a smile she just might have some good news for me. And good she had. Called me the next day to advise I had advanced hip osteoarthritis and was surprised I was still upright. Which was fantastic, though my relief was tempered by the knowledge it was still quite possible this was just something else I had wrong with me.

I’d still not had the results of my genetic testing, after some 18 months of waiting. She spoke to my neurologist and they managed to get the results fast tracked back in two weeks. It was never expressly said but I got the impression she had spoken with an orthopaedic colleague who had looked at the x-rays, but we’re concerned as I was that the hips could just be something else wrong and unconnected to the prime problem of the degenerative neurological disease - and the NHS perhaps wouldn’t waste resources on a fait accompli.

Anyway, the genetics came back negative. Incredible. I’d just got my life and future back. Surely. I naively thought, having been put through four years of living with a wrong diagnosis, dosed up with controlled drugs for a disease I didn’t have, the NHS would come to my rescue. Surely to goodness ? Nope. This was start of June 2024. Still haven’t seen an orthopaedic consultant. Still haven’t even got an appointment to see an orthopaedic consultant. GP was told I’m not a priority as I’m not receiving pain medication - I get on with it - he suggested I’m prescribed painkillers - one month of codeine phosphate. One month. So he can write and tell the trust I’m in pain. Didn’t touch them with a barge pole.

But that’s not the point. The point is my trust (Leeds) is still claiming average waits to see a orthopaedic consultant is 20 weeks. Here’s the rub. You don’t join the waiting list till you see a consultant and that consultant specifies surgery. Until that happens you don’t exist as a statistic. Not even a statistic.

Pain and discomfort progressively got worse and worse couldn’t get peace or rest. Realised the NHS were not going to come to my rescue. If I didn’t help myself nobody else would. So, I paid for my consultation. X-rays taken. And a date for surgery offered. Yes it was expensive. Had my left hip replaced. Brilliant care. No infections. Rapid recovery. Hospital was hardly luxurious, but the care and efficiency was brilliant. Off a single crutch in 10 days. Now walking without pain in that leg - but boy does my other leg give me hell now.

Can’t afford to get the other hip done and still nothing but radio silence from the NHS. Oh and still on the same old same old medication for the neurological disease I don’t have. Don’t have any expectation the NHS will sort out the other hip. None. I have to save up and fund my own treatment. I may as well accept that. I’m a positive thinker and that’s always done me proud but I do wonder, sometimes, if the NHS could have stitched me up any more efficiently if they tried. That rehabilitation consultant told me I must be wrong when I couldn’t recall ever having an examination of my hips. But I couldn’t. As it happens when she went through my records she couldn’t find any record of a hip exam. Or x-rays. Whole body MRI, yes. That showed the damage to the hips, yep. But they weren’t looking at my hips. Diagnosis was by pure fluke. Which I'm nonetheless grateful for.