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.

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.

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 a  difference.

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.