Dr. Morgan

Paying tribute to one of my favourite humans who passed suddenly last month.

Photo taken at the RHS Chelsea Flower Show 2024 by me.

Alt Text: A stand filled with beautiful varieties of flowers in whites, pinks, yellows, blues & purples. There is a small shed made out of distressed wood. Hanging on the door is some information signage about bees & a certificate that says ‘Gold Medal.’ The display is inside a huge pavilion.

My blog is very late this month. If you’ve been following me on social media, you know I’ve had all sorts of upheavals & tricky times over the last 6 weeks. I moved out with my partner for a month so that we could get a couple of rooms in our flat decorated & we were living in budget hotels. During that time, both of us managed to injure our backs & it’s taken us some time to recover. Living away from home & returning to put our flat back together once again certainly didn’t help matters (thanks to our friend Paul who came to our rescue!) But we do have a beautiful home now.

I had an amazing time at Breast Cancer Now’s The Show 2024. It was so lovely to reconnect with the ‘Gang of 2023’, but I’ll save celebrating that gem of a reunion for another blog. In the meantime, here’s my thoughts about a very special person who passed very unexpectedly last month.

At the beginning of this week, I had such a horrible shock & as these things seem to go nowadays, I found out on social media.

Turning back three decades, I was in a very bad way with my impairment. I’d had a disastrous operation to straighten three toes on my ‘bad foot’ (I’ve called it that for years but it isn’t that bad, in fact it’s rather sweet with its little piggy toes) & because the aftercare wasn’t fully explained to me, the surgery led to a series of terrible infections that needed strong antibiotics, often administered intravenously. It was looking increasingly like I was going to need my foot amputated because I was running out of treatment options – they were no longer effective. I knew that any amputation wouldn’t just be my foot. Because the circulation is bad in my left leg & I’m paralysed from the knee downwards, it would be really hard for my leg to heal. I felt that it could well lead to several amputations, going higher up my leg each time.

What angered me was the general consensus of my orthopedic team. They gave up on my foot pretty quickly & went straight into “let’s cut this off” mode, together with all the usual tropes such as “that foot doesn’t work anyway, you don’t really need it, it gives you more trouble than it’s worth”, etc. OK so my foot has never worked well, but it’s my little baby foot & I’m quite fond of it. With regular monthly podiatry, my foot is managed very well now. But what I definitely needed was my leg for transferring & for balance, even though I can’t fully weight-bear on it.

So there I was, in a hell-hole. In truth, I’d never liked that particular consultant, even when I was seeing him in the wonderful children’s hospital Great Ormond Street. He was patronising, rude & very dismissive of my parents’ questions & concerns. And then when I started going on my own to appointments from the age of 15, he was just like that with me. Horrible man.

Whilst at the GP getting another round of antibiotics, I lamented to him that I really wanted a second opinion. My GP mentioned that a new clinic had been set up for my disability & that because it was at Chelsea & Westminster Hospital, I was able to attend because I lived in the same borough. And then things changed for the better.

Dr. Morgan came into my life when I was about 25. He was gentle & kind. He took time to explain what was going on – not just about my foot, but other aspects of my impairment. He diagnosed several more comorbidities (what a charming term!) & then he put me on the right medication. I discharged myself from the other hospital. It took 2.5 years but my foot recovered.

Dr. Morgan took me from a young, not at all sober, on the verge of homelessness, dating a string of terrible men & very sick, woman, to where I am now: a middle-aged women, safe in my accessible flat in a quiet part of North Kensington, 100% sober & in a long-term relationship that will turn 17 years in October. Ok, I’m still sick, but you can’t have everything, lol!

At the first appointment, Dr. Morgan took time to explain how bad the curvature of my spine was & that I shouldn’t be walking. I was shocked. Year-on-year I had x-ray after x-ray but my former consultant used to put the x-ray images up for his team to see, grunted at the images & then quickly take them down. He failed to even address that I had one of the most serious curvatures & what the consequences were to be if I kept walking. He never, ever mentioned that one of my kidneys was very small. He failed to diagnose that I had Raynaurds. He failed to explain why I was such a poor eater (my stomach is squashed up due to the pressure of my spine). Dr. Morgan explained all of these serious issues to me.

Moving on with the story, at the end of my twenties, I had a very brief spell of wanting to have a child. Dr. Morgan arranged for me to have a tour of the maternity suite & to explore with the team how they might take me through being pregnant to giving birth. I’m not going to give any more detail on this but I decided not to have children in the end (it wasn’t because of the medical team putting me off on the tour at all. In fact, they were very encouraging & supportive).

Dr. Morgan created countless letters & statements in support of better footwear, better lightweight wheelchairs that I could self-propel & other equipment. Every year we’d catch up & he’d tell me that he was supposed to retire, but he was worried about the fact that the clinic was threatened with closure. In 2017, he started to slowly handover his work. He admitted that it was difficult for him. We had lots of discussions about when you found something you’re passionate about (I founded the charity Attitude is Everything), it’s hard to leave it behind. He genuinely cared about all of his patients & he treated them from a holistic perspective – he understood the impact of physical hardships & long term chronic pain on his patients’ mental health.

He knew that I lived life to the full. He accepted that I wasn’t always going to take his advice. He knew that I’d always be pushing the boundaries of my limitations. But he never judged me. He never said “I told you so” when things weren’t a bit awry. Most importantly, he just picked me up & put me back together again after each downfall. That’s probably what I appreciated most of all about him.

When my breathing & sleeping patterns began to change, he arranged for me to become a regular patient at Brompton Hospital. He sent me to the Pain Management Clinic when my pain started to interfere with everyday life.

To be honest, despite the challenges, my life was ok. But then I got diagnosed with Breast Cancer.

As soon as I received the diagnosis, I emailed him. He immediately responded & gave me lots of information. He suggested questions that I should be asking the Breast Care Unit. Over a few months, we emailed back & forth & he gave me a lot of care & confidence. This was during the pandemic, so email or telephone was the only way to communicate. He also communicated directly with my Breast Cancer team.

As soon as I’d had my operation & radiotherapy, Dr. Morgan got me into his clinic. He gave me some very wise advice – that in time, I’d get to know my body again & that I would be able to distinguish what was normal for me & what was new & different (I’m still not at that stage where I can tell symptoms of my impairment from the side effects of my cancer treatment). He told me not to canvass too many opinions when seeking clarity because I could become confused. But most of all, he stressed that I must continue to make plans for the future & not to let my life come to a standstill.

That was my last conversation with Dr. Morgan. We said our goodbyes & we wished each other luck. I was too shy to ask for a photo with him. Although I was very sad that I wouldn’t be treated by him again, he’d worked far beyond the recommended retirement age & I wanted him to enjoy his time. He absolutely deserved it.

A friend of mine who attended the clinic told me that Dr. Morgan loved bee-keeping & that he was interested in bee conservation. With this in mind, I took some time out at Chelsea Flower Show yesterday to seek out a display which focused bee-friendly planting. Once I found a display complete with a pretty shed, I stood there, lost in my thoughts about Dr. Morgan for a while. Then I looked up & there was some information hung on the shed door . It said that there were 24 species of bumble bees. I never knew that.

Dr. Morgan, still teaching me.

Rest In Peace my friend. I’m so gutted that you didn’t get more years to enjoy your retirement. It doesn’t feel fair at all. You’re so loved by many people. You changed lives for the better. I’m so very grateful that you were there for me. You were an exceptionally kind & nice person.

An obituary from the charity Shine.

Alt Text: Grey text on a yellow background, with the Shine logo, a yellow ball & the words Shine. The text says: Our Deepest Condolences… It is with great sadness that we have to announce that Dr. Richard Morgan, founder of the Adult Spina Bifida clinic in London, passed away suddenly last month. Dr. Morgan founded the clinic at Chelsea and Westminster Hospital as a transition clinic for local young people in the early 1990’s. However, it quickly grew to take around 600 patients from all around England. The multidisciplinary approach was, and still is, unique in England, operating as a ‘one stop shop’ for check up’s and advice. Dr. Morgan retired from most work in 2017, and finally handed on the clinic to Dr. Mizoguchi in November 2021, having warded off the threat of its closure. Dr. Morgan will be fondly remembered as a dedicated and highly respected doctor, and as a true gentleman. He will be greatly missed by many of Shine’s community, for whom he did so much. Our thoughts are with his family at this saddest of times. The Shine team.