Taking back control…

Well… following on from yesterday’s post and all the strange official things that are apparently up to me to make decisions for – whether I get access to a certain type of treatment I’m hopefully eligible for and am desperate to have at some point, and then also when I have it; during radio, after radio, or some other option maybe which I’ve not managed to think of yet so don’t know whether to ask for…
Then of course me deciding where I would like to wait for an appointment that’s apparently been organised for me which I think seems to not actually exist…

Anyway, the one thing that I wish had been in my hands was the damn hospital transport situation. I know, it was weeks and I’ve not spoken about it for a while, but just thought I’d update you on how the decision of what to do with it was essentially taken out of my hands. That first week, I really gave it a go. It would have been silly not to.
And I’m not going to recount it in detail because if you’re anything like me, you’re probably still processing the trauma from that time. From them turning up five hours early, to three hours early, to waiting hours to get home… It really felt like I was spending all my time waiting to be at the hospital, or in a bloody ambulance (like… I’m fine, guys! I just went to a rave last week!) or waiting for the ambulance to take me home. The hospital time itself was fine, and generally takes like 30-60mins. But then I’d have to sit for hours waiting to go home. What I can get done easily in a morning, was adding up to 7/8 hour says, and I was EXHAUSTED. And let me just pull your mind back for a second to that week – that week of hell where I’d vomited up my pain meds and was running on near empty. It had taken me three hours to get home that day and gosh, it all felt pretty grim.

Thankfully I was feeling a bit more on track by the Friday. I had that amazing little coffee date with my dearest Krista, and was getting back on top of the pain, and starting to feel like myself again. When we finished our coffees and went our separate ways, I went back to the hospital to await my dreaded hospital transport. When two hours had already passed, I asked for an update of when it might come. They said they didn’t know, but it would be a while. The problem, they told me, is because I’ve been flagged as ‘so unwell’ or whatever, they can’t just get me a car as usual, it has to be an ambulance, and it’s always full with pick ups and drop offs, and it just means there’s a lot of waiting. I mean… we knew this, didn’t we. But hearing it said back so plainly was just like… I don’t know. It just wasn’t working for me. And I really felt like I was being made inconsequential in my own care, my own life. So I asked if I could just leave and get the bus instead, since I would have already been able to do that journey twice in the time I’d been waiting. They shrugged and said ok. So I tottered off to the bus to have a lovely little bus adventure home.

I’d managed to get the email address of the person who I thought was like a CNS (Clinical Nurse Specialist) for the radiotherapy stuff, but I found out later that she’s actually a senior radiographer so I felt a bit silly in hindsight, asking her about my hospital transport. But she was the one who I’d been told was my main contact for radiotherapy (then of course, wasn’t given her contact details).

I sent the following email:
I just wanted to ask about my hospital transport. It went so smoothly on the first day, but then I was switched to apparently needing ambulance transport. Since then I’ve had things such as: it turning up five hours early and three and a half hours early to pick me up, taking three hours to get home, and today I waited for two hours and they still didn’t know how much longer it would be, so I went and got a bus home.
It’s just been really negatively impacting me, turning my trips to the hospital into so many more hours than it should be. I’m pretty fit and healthy, but I just don’t have the energy around coming in every day for the radiotherapy to keep doing it. Is it possible to get switched back to a normal car? Otherwise I guess I’ll have to cancel it and get the bus instead…

I also asked about the treatment reviews because I was very confused by them. Anyway… She called me back a couple of hours later saying she’d been on the phone to the transport company and they refused to switch me back. Apparently since the hospital team had filed paperwork with them saying ‘MIGHT DIE ANY MINUTE’ (remember that?) and since I’d been forced to sign that ‘Do Not Attempt Resuscitation’ order in order to get treatment, the car service said they wanted nothing to do with me, so ambulance it is, or I find my own way – the bus.

So they have flagged me as being pretty ill, and instead of thinking ‘ok, well, as a hospital we have a duty of care here… it’s up to us to make sure she’s particularly looked after then,’ they seem to have gone the other way of ‘better make sure we save our own asses and she can just spend 7 hours each day waiting and travelling and waiting, just to make sure she goes in the ambulance, not one of the cars that we can literally order to her door in order to minimise the physical, mental and emotional stress…’
Of course the other people in the ambulance were in wheelchairs or beds, they literally need the extra care of the medics for the journey. I bounce on in my pirate boots or my full sequin jacket. Something just doesn’t add up. And it’s wasting their time and energy and mine.

So the call ended with ‘I’ll cancel your hospital transport and you can get the bus/tube in every day.’
Isn’t that wild though? So apparently unwell that I need an ambulance, but actually no, just go find your own way on the bus…
I asked if there was a way to make a complaint. Well, not a complaint so much as just giving some feedback. Because they really need to know the impact these decisions are having on the very people they’re supposed to be caring for. To tell them about this actual human here, and just explain that the way they’re treating me isn’t actually ideal or particularly nice. She suggested PALS (The Patient Advice and Liaison Service), which Google tells me is ‘an English National Health Service body created to provide advice and support to NHS patients and their relatives and carers.’
Ok, doesn’t mean much to me, but apparently they’re the people you complain to.

Since then, I have spoken to other people along the way at UCLH about the transport debacle – like my psych, my pain team, and a few more – people who are invested in me and my experiences. And the overwhelming response from them is that if I have the energy to do so, please make a complaint. Because them doing it goes nowhere, but if an actual patient highlights how some of these practices are negatively impacting the patients, the sole people that it’s all meant to be supporting and catering for, then there might a unique chance to actually make some change and make an impact. And you know me, anything I can do to make moves towards more patient-centric care is something that’s really important to me.

Let me tell you… that first Monday I got the bus, it felt like a weight was lifted off my shoulders. No more waiting, I know when I needed to be ready and the exact time to leave… I was back out on my own adventure, not having to wait around for hours to be filed into a bloody ambulance (and having yet another reminder of being ill). The bus driver was also particularly lovely that day, we said hi and then waved goodbye and he even waited for me cross the road after I got off then he tooted his horn and we waved again.

Yep, I’m back in my zone. Yo ho, yo ho, a bus (and pirate) life for me.

Have I had the energy or time to make the complaint yet? No. Will I? Perhaps. It’s on my list. Maybe this is the first step. But my list right now is verrrry long, with some very exciting big ticket items on it… But I’m about to head off to get THE BUS to my zapping now (Day 17 of 30!) so you may have to wait just a little bit longer…….

I will leave you however with one last little anecdote… I went over to my dear friend Christina’s house last week for a HAIR DYE PARTY! Oh I just wanted to have some reckless fun, to regain some form of control, to do something I’d always wanted to but never had – dye my hair blue. For years I had a pretty substantial blue streak in my hair by my ear but I’d never gone blue all over. So first, she bleached it. Then we drank champagne and chatted about any and everything (she’s one of my favourite people to talk to, honestly. Another batteries included friend) and then somewhere along the way, the yellow it was becoming as it dried started to look quite fun.

And I thought hey, it feels like a missed opportunity if I rush past this and don’t take a week or two to enjoy it along the way!!! It’s the Spike-from-Buffy-meets-Bowie-from-the-Man-Who-Fell-To-Earth crossover of my dreams that I never knew I needed until now.

3 Comments Add yours

  1. Eva Meland says:

    Cool hair!
    Honestly, the transport saga is baffling, and how infuriating it must be! Talk about unintended consequences. Likewise the review debacle. Someone had a good idea and completely forgot to tell the people who were meant to implement it. Total madness.


  2. Kirralie says:

    “Yellow” aka Bombshell Blonde suits you Jen – it especially pops with the res jacket and gold trim. Cheers to you Lovely and well done on side tracking the transport issues that were quite frankly not recognising your precious time. Spent it well, the time you have freed up by not waiting around for ambulances. Good choice, I reckon xx


  3. as.kling@bigpond.com says:

    Wow you look stunning Jen! Love the new hair colour. I have always said ‘Blondes have more fun’ 😊

    You must be looking forward to seeing your Mum & Dad. Hope you have a great visit and party on!

    Lots of Love, Sally xxoo


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