Project Managing Pudding

Regardless of the stage of my career (or even which career…), I have always held roles requiring significant juggling, monstrous multi-tasking, and a careful balance between micro-management and trusting people upwards, downwards and sideways to do what they need to, without anything dropping between the cracks.

People talk about these as transferable skills, but boy-oh-boy did I not realise how much parents of children with healthcare issues need those Project Management skills transferred out of work, and into the home!

I don’t know if this challenge is unique to the UK and the NHS, or to undiagnosed children, but one of the biggest problems we face is that nobody ‘owns’ Obi and takes responsibility for his overall care, except us.

As Obi’s parents, we are of course responsible for follow-ups and coordination of every single appointment with doctors and specialists. We have to check, confirm and diarise them as they are unilaterally foisted upon us, via what feels like an entirely random selection of snail mail, emailed attachments, text messages, any one of the five apps and web portals I’ve had to sign-up to, and even – on occasion – a  phone call where we do get to discuss what time might suit us.

I took a call today to book something in for seven weeks’ time, at 10:30am on a Thursday. “I don’t suppose you have anything earlier in the day, do you?”, I asked. There wasn’t another slot until a month later, apparently, and that was even more disruptively timed. So, I took 10:30 on a Thursday. Sorry, work - you lose. Again.

But all parents have to juggle diaries!

Yes, they do. But Obi recently turned four, so let’s say he’s been alive for 208 weeks. My calendar tells me that he’s had over 120 appointments in that time; roughly one a fortnight. For his entire life. That could be three a week, three a month, or on one particularly nightmarish occasion it was three in one day, across two hospitals (I think that might have been the same day I got shat on by a pigeon while waiting for the train…), and sometimes we’ve had three weeks off – it’s just however the dates fall.

Anyone would have to admit that’s a lot of appointments, and then of course some get cancelled / rearranged etc., which all adds to the admin. I’m really quite proud of myself that there’s only one we’ve ever not shown up for, and it turned out that wasn’t entirely my fault. I got told one time on the phone, before another was text through, but as I’d diarised it there and then I didn’t bother to double-check the date and time (I get a lot of these texts…), which had – in fact – been changed.

But this isn’t just a rant about a heavy admin load. C’est la vie – at least we’re getting appointments. The more serious problem is that it falls to us as parents to coordinate Obi’s actual care.

Even Transferable Skills have Limits

When he was a baby, we got referrals to specialists left, right and centre as people tried to work out what was causing Obi’s increasingly significant delays. But each one only looked at the symptoms relevant to them. Fair enough! It can’t be a cardiologist’s job to look at his brain, or a gastroenterologist’s job to question his coordination. But there was no-one holding it all together, or connecting who we’d seen and what we’d learnt as we went along.

This lack of coordination started before he was even born.

Exhibit A: Mixed Signals

Obi’s head was measuring a bit small in my 20-week scan, but after a repeat a couple of weeks later with the same results, no-one would take responsibility for making a call on what a ‘small head’ might actually mean. I refused to be fobbed off again to ‘come back in two weeks’, and insisted they find someone who could tell me. Unfortunately, it was all ‘I’ and ‘me’, because Covid restrictions meant I had to have all these scans on my own - those are some phone-calls to Patrick that neither of us will ever forget. But my forceful-but-polite (-ish) insistence on answers got me referred to a specialist foetal unit for fortnightly scans.

Over the next few weeks, three different consultants said they thought the small head was just “constitutional”, and categorically not microcephaly, because of the shape of the skull and the fact he was in proportion (they were wrong, obviously).  

At one point near to full-term, I got a call from my local hospital telling me they’d all bothered me enough, and – if I wanted – I could go ahead with another birthing centre birth, because it now looked like a low-risk pregnancy.

Great! Phew! What a relief!

Which is why I got such a shock when I went for my fortnightly scan at 38 weeks, only to be looked at quizzically because government guidance for small foetuses was to induce at 37 weeks. No-one had thought to mention this. Not even in passing. Not at either hospital. It was quite the emotional rollercoaster, as I’m sure you can imagine.

But when Obi did finally show up (glad I’m never doing that again!), he was breathing and healthy and bang on the minimum weight they accept without further investigation (not that they told us that part), and all seemed well. Until it was time for the newborn discharge tests, where the doctor said “oh, his head’s a bit small”. Uhhh… wasn’t that why we were there?! No-one had thought to ask why I was coming in for an early induction, or bothered to read anything other than the top page of my very fat file of notes.

We have since had a written apology that there was no-one from the neonatal team in the room when Obi was born, because of course they should have been there to check on him immediately given the concerns.

Looking back now though, it’s clear that no-one takes responsibility for a person, only for symptoms or syndromes. Everyone thought it was someone else’s job to join the dots, and our problem was that we didn’t know we didn’t know who was coordinating my care; we’d assumed they were all communicating and reading my notes. If I’d known I was in charge, I’d have done a better job of it.

Exhibit B: Obesity is in the eye of the beholder

We found it strange that no-one looked after us while we looked after Obi in those first few weeks and months. We were in a bit of a fug, just going from one place and one day to the next. He was having brain ultrasounds, CT scans, screaming uncontrollably, soon started vomiting constantly, was missing milestones and wasn’t putting on weight. And I’ve mentioned before about his ‘funny turns’. But every different symptom was being treated in isolation, because there was no obvious cause. And when the initial set of genetic testing came back negative, that was deemed to be A Good Thing.

In theory, Obi was under the care of the (very lovely) general paediatrician at hospital, but it wasn’t his job to actually coordinate anything – he was just checking in every now and then, mostly by putting Obi on the scales and just seeing what else was new.

An NHS-sanctioned meal for Obi: cake

This disconnect meant that no-one told us when the dietician was giving clearly quite bad advice. She was trying to fit Obi onto the charts every parent will be familiar with, that show a ‘normal’ growth curve. This meant a fixation on him gaining weight. And all the other doctors we saw, including the GP, smiled and nodded. I really did enjoy the NHS-recommended diet of chocolate, ice cream and cake, and particularly the looks I got feeding my tiny baby (probably 7+ months at the time, but looked about half that) doughnuts and biscuits!

But it took a random specialist we were seeing about something not weight-related to point out that our son was seriously obese, and that clearly the ‘diet’ wasn’t having the desired effect and if continued, would become dangerous. For whatever reason, he was taking on all those extra calories, but they weren’t helping him to grow. At least not in the right direction. And no-one else had said anything, but his weight wasn’t their responsibility.

When I look back at photos now, I can’t believe I couldn’t see that his eyes looking squished shut was a sign he might be overweight, especially as Patrick insists he regularly commented on it. But after the problems with Connie not putting on weight in those early months and the dietician being so clear on Obi’s goals, I was on full ‘follow orders’ mode.

Exhibit C: Missing out

Because we don’t know what’s wrong with Obi, lots of doctors want to check for things we can’t see, but Obi going under a General Anaesthetic is a Big Deal. Because there’s no immediate risk that we know of, this means that when there is a reason to put Obi under, we need to do a few things at once.

We did this with an MRI where a skin biopsy was also taken for genetic testing – it was straightforward because the neurologist had engaged the geneticist in the first place, so they requested the checks together. And special mention to the neurologist, by the way, who has done absolutely everything in her power to help us coordinate care, kick others up the bum to get action, and just generally gone above and beyond to give us guidance on how to manage within the system. Without her, I really don’t know where we’d be with Obi (but I definitely wouldn’t be writing this blog, given it was her suggestion!).

But back to the scans: a couple of months ago when Obi went for another brain MRI, we also needed a hearing test done (it was too hard to judge Obi’s hearing with traditional tests, because his responses are so erratic), but also a scan of his cardiac system, to confirm everything is as it should be because there’s a slight – probably harmless – irregularity in one of his valves.

The MRI got booked, and I flagged the need to coordinate these three tests. The chap confirmed my request, and said it was now on the notes for Obi’s appointment. We arrived at the hospital, and as we went through the MRI paperwork, I asked again to confirm that both other tests could also be run. Blank faces. No idea what I was talking about.

To the team’s credit, they managed to run around and find someone from audiology to do the hearing test while he was under (his hearing is great, so he is in fact just ignoring me, like any mischievous toddler), but there was no-one who could do the cardio test, which I can’t help but feel was probably more important!

We now have a number to reach the cardiac team should the opportunity arise again for a scan, but – once again – it’s on us to remember to do that, and to find the right person and point in time to get it all aligned.

Better Outcomes for All

And this life, my friends, is a better Project Management qualification than I imagine I could ever find in an online course. And I do hope that now NHS England is being shut down, the changes will lead to somebody listening to the logic which dictates that treating a person, rather than symptoms, will be a cheaper and more efficient way to get people back to health, costing the NHS less in the long run. Surely, a win-win?

What we Learned:

1. You don’t know what you don’t know, so ask. It’s the only way to find the gaps and understand what you as a parent of patient are actually expected to do.

   
   

2. Do not trust the system. Most people aren’t experts in the weird and not-so-wonderful ways of NHS processes, but believe me when I tell you that assuming things work will not get you to where you need to be. Obi’s been accidentally discharged from one doctor and didn’t get the annual follow-up he needed from another until I chased it, so make sure you get the details of your specialist’s secretary so you can push. Question everything, and then double check it, however obvious you think it might be.

   
   

3. Hold on to the good ones! One of the best pieces of advice we were given (by the neurologist, of course!) was to not let anyone ‘close the file’ on Obi. If someone closes the book, Obi goes straight to the bottom of the waiting list if we ever needed that specialism again. We’ve never had a problem with just saying ‘great, we don’t need a follow-up appointment, but please don’t close his file – just in case…’; it’s already been worth it once for us, and I’m sure it will be again.