The hardest week of my life

This is the hardest blog I hope I will ever write  I am broken yet fixed again. Thank you NHS.

At the end of last week our 6 week old boy Hamilton wasn’t well, he’d caught the cold that his brother, sister, my wife and I all had. He’d been to the doctors and checked over, but less than 24 hours later something wasn’t right, his head was bobbing a lot and he was panting for breath, he didn’t want food and wasn’t himself, holding him in my arms he was floppy, he was lifeless, my baby boy was dying. A visit to the doctors again and we were sent straight to the Paediatrics ward at Warrington Hospital, I don’t even know why we didn’t go to A&E first, I should have know better.

 

It was serious

After immediately assessing his presenting symptoms they put him on a ventilator, all settings cranked up pumping in oxygen, 8 ltrs per minute at 50% oxygen levels opposed to the 21% you find in normal air that we all breath.  They tested his blood, his PH was low and CO2 was way too high, he wasn’t able to breath and therefore there wasn’t enough oxygen in his blood supply to keep him alive .

 

To April and I, we were watching our baby boy suffer, he was dying, we were a complete mess, working with the NHS means I have to be the calm one, my wife looks to me for that reassurance, I am not medically trained, but I guess I say the right things to her. Holding back the tears for ages, I finally found a natural moment to fake the need to go to the toilet so I could release the litres that had been building up.

 

Poorly Hamilton

Poorly Hamilton

 

A chest X-Ray showed that Hamilton had pneumonia, two cloudy white lungs lit up the image where you would expect to see nice healthy dark black ones. I didn’t know how to fix this, I was lost.

 

The staff were outstanding

The consultant that was treating him was amazing, he’d come from India where he had trained 26 years ago, he was a lovely man.  He told us about his daughters that he pays to put in private school, a man who seemed to do nothing but give to this country, my wife said to me “I hope he doesn’t think this country doesn’t want him and that we don’t love and respect him”, a statement of the times.

He lives close to us, almost a neighbour and he was very calming, he asked about us, our families, our work, our lives, he genuinely was interested in getting to know us, he told us all the details about the situation, he explained what things meant, what we were aiming to do and how we would be able to see if it was working, he knew I was a logical person and wanted to understand the detail, he explained the read outs of all the machines, reports, and what everything did. It wasn’t all good news, but he knew we were very worried and that we just needed to know and make sense of the situation.

We now had to watch and wait for 12 hours to see how Hamilton would respond to the antibiotics and if things got worse he would be on a full blown life support machine.

The SHO’s and Nurses were equally exceptional, keeping us updated on progress, sharing the actual numbers and data with us at each of the gas tests they did by pricking our babies heel. They helping us settle and calm him, they ensured we took the time to look after our selves, which was a secondary concern of ours, but they knew we weren’t eating, drinking and they pushed us to ensure we were in better condition so we could support out child.

Over the 96 hour period he wasn’t in a good state, we slept about a total of 10 hours, my wife on the hospital floor and myself at home before being called back as things were deteriorating.

We needed to ensure our other two children were ok too, to say it was a difficult time is an understatement. Eventually he got better though, the antibiotics were effective, he responded really well, we didn’t need to insert a feeding tube into him, although the nil by mouth for 3 days was really distressing for him.

In in the end and thanks to the NHS we do now have a fully recovered baby boy. It makes me cry with joy typing this. I am so proud and privileged to work with teams doing everything they can to make s difference.

 

Hamilton is better

Hamilton is better

Regrouping as a family

After we got him home, I needed time away from work, we needed to regroup as a family, I needed to help with Sienna and Sebastian, doing school runs and ensuring they carried on as normal as possible while my wife ensured Hamilton was tended to around the clock. During my time off I did think about work, naturally, and how we talk about need state. It’s really difficult to understand what someone is going through without actually being there at the time they are going through it. Upon reflection it made me think about what was needed, the doctors and nurses knew what was needed for our baby, but they gave more than that, they understood the whole context of what was happening, what we were also feeling and the effects it would have on us even though we weren’t the patient.

Digital Service Design

As NHS 111 Online and NHS.UK are transformed into providing better digital services, it has almost been an awakening moment for me, the feedback that the new beta content team are getting is invaluable and reflects my own opinion. It isn’t about just having a simple guide about what you need to do given a certain criteria, it’s about understanding the context of what the need state of the individuals is, and also those they are surrounded by, without this information rich service design we risk treating people like numbers with a lack of empathy and a patronising tone.

Information is a key component of need state, people don’t always just want something sorting in a way that is simplistic, some of us like to understand the complexity, understand the system and what is going to happen and when. We must not forget to treat people like people and I know the excellent user research that has been carried out to date absolutely understands this, there is more to come from beta.nhs.uk and 111 online.

Thank You NHS

I am sure this kind of thing was an everyday occurrence for the staff at Warrington hospital, but they knew it wasn’t to us, they were calming and sympathetic to what we were going through as worried parents. They knew what was needed to treat our baby, but they went much further, they gave us a service that is second to none, that is what the NHS does, every single day, in our digital revolution our job as technologists working closely with our clinical experts, designers, user researchers and the wider teams is to ensure we too go that bit further.

The Yates family has been to places it didn’t know, and we now know what real fear really is. The impact of our mental and psychical health is very apparent, we’re both still a nervous wreck but we are stronger, more determined and have a relentless pursuit to doing more using the skills we have to help others.

We were lucky when others aren’t, we are grateful and hope it will show in our work.

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