… for the people who work for the NHS.
I am extremely grateful to the NHS. I’ve certainly got my money’s worth ever since I was diagnosed with muscular dystrophy in 2019, and I am increasingly dependent on all the different bits working together seamlessly. It doesn’t, of course, and things fall down the cracks from time to time, but on the whole I am supported by a team of skilled, friendly and compassionate people who do a fantastic job but who are hampered by baffling rules and an overbearing bureaucracy.
In the last eighteen months I have had seven or eight hospitalisations, mostly respiratory related although the most recent stay found me being treated for a duodenal ulcer on a gastro ward. On each occasion I have been admitted to Southmead Hospital – a brilliantly designed building (at least from a lay person’s perspective) that looks more like an airport terminal than a hospital.
Southmead Hospital
I go there because that is where the neurology team that have looked after me for the past six years are based and where most of my outpatient appointments are held. It is helpful for the team to be on hand when I am admitted with other issues as it is my muscular dystrophy which is the underlying cause of these other problems and they can help join the dots for the teams involved in my care.
I am so-regular a patient on the respiratory ward that when I am admitted staff pop in to say hello and I am part of their frequent flyer program (with free upgrades to their business class facilities and access to their VIP waiting area 😂).
On the whole they remember that I prefer to be called by my middle name, they know that I am dependent on help with even easy tasks, that I prefer to be in my wheelchair than be left lying in bed and that I like to have a suction tube to hand. Those who have known me the longest know I am articulate, even though I am now barely able to speak, and I am able to make decisions about my treatment.
But there are strange limitations to the care they are allowed to provide that baffles me, and at times potentially puts me at greater risk in an environment where I should be safest. Let me give you an example.
At night I sleep attached to a bi-pap machine, which basically ensures that I breathe efficiently during the night and that I am able to expel carbon dioxide from my lungs. The machine, which I bring in from home, is preset and could be operated by a gibbon. I simply need someone to put the mask on my face and switch it on, as my muscular dystrophy prevents me from doing so myself, but only a nurse is allowed to help me, not one of the care team. And, to make matters more bizarre, when I was on the gastro ward recently I was told that not even a nurse was allowed to help as it wasn’t a respiratory ward, (although the same bank nurse, had she been working on the respiratory ward, would have been allowed to help!). It took a lot of effort and anguish on both sides to get the issue sorted out as I would have been in danger of respiratory failure without it.
The same demarcation rules apply to another piece of kit that I bring in from home – a cough assist machine – which again is preset and which again can be operated by anyone who knows what an on-button looks like. In this case the only people allowed to operate it are the physiotherapists – the very same people who tell me to use the machine prophylactically when I get up and before I go to bed and which all sorts of people help me with in my home environment.
I could bore you rigid with observations about booking systems where waste and failure are hard baked into the process but that takes me a direction I don’t want to go. Instead, I want to focus on the thousands of staff who turn up each day wanting to apply their skills to help patients get better.
A recent stay coincided with my birthday. I was touched with how many of the staff recognised the fact whenever they came into my room, and then this happened:
(allow time for the video file to load)
A young care assistant had taken it upon herself to organise this impromptu choir. It would have been better if they had rehearsed beforehand, or at least agreed on a key to sing in, but the gesture was beautiful.
And this is why, with all its faults and frustrations, the NHS is such a jewel in the crown of the UK. At its heart is people caring for people.
❤️ lots of love to you Ian
How lovely! You’re right, the vast majority of staff just want to do their very best to help. They must love you especially though, as that is the royal treatment!
Belated Happy birthday Ian. Thank you for sharing and agree most health staff do their work very well and much appreciated.
Always interesting and uplifting to read what you have to say, Ian.
Your musical extract and comment reminded me of Spike Jones & His City Slickers recording of The Tiger Rag.
https://archive.org/details/spike-jones-2/03.01+-+Tiger+Rag.mp3
Groups playing and/or singing in the same key is much overrated!
Ha ha. Reminds me of my time in the Essex Youth Orchestra (I played the viola). We were struggling to master a particularly tricky passage – we could manage to get all the notes right, but not at the speed required. Our tutor from the London Symphony Orchestra encouraged us to focus on the rhythm telling us, somewhat memorably ‘to hell with the notes, just slide around in D’.
Also a belated happy birthday to a fine man
Happy belated birthday -Ian! Maybe it’s just my ear but I thought the choir sounded amazing! What a lovely thought. I’m glad that the health care professionals seem to realise that, whatever your physical disabilities, your mind is working as well as ever and that you have the capacity to make decisions about your own care and treatment. I’m doing a lot of work to do with the Court of Protection now, as a volunteer with the Open Justice Court of Protection Project. I observe court cases and write blogs about them – they aren’t anywhere near as interesting as engaging as yours though. I’m even starting a PhD in October, with the subject of family experiences of the Court of Protection. Thought you might be interested in my latest news. I think about you often xx
Thanks Amanda. That sounds like an interesting project. xx
Thank you so much, Ian, for sharing your thoughts. Phil and I reading together, grateful to be able to gain strength from your gritty determination, sense of humour and literary skills.