Yesterday I had a dental injection. OK, so it wasn’t the best few minutes of the day, but I coped and took it in my stride, a remarkable achievement for someone like me who has had a lifelong and extreme phobia of needles.

Since I was eight years old, seriously ill in hospital, and held down repeatedly while they forced a needle into my veins to take blood, I’ve carried that fear and terror with me every single time I’ve had to have a blood test or injection. Each time I’ve been an emotional mess for days before and afterwards. Along the way I’ve tried every therapy and treatment there is in an effort to overcome it, and nothing has done the trick.

Until two weeks ago when I became the first ever grown-up member of Harvey’s Gang

Harvey’s Gang is named after Harvey Baldwin, who was an eight-year-old boy with terminal cancer,  and who like me, didn’t like blood tests much either. He was a patient in Worthing Hospital where Malcolm Robinson works as their Senior Scientific Officer. Malcolm heard about Harvey, and invited him to visit the Path Lab to see why blood tests are important and how they are done. Harvey loved his visit,  and after he died in October 2014, Harvey’s Gang was set up as a Charity in his memory, with Malcolm and Harvey’s Parents working together to ensure children everywhere can have a similarly positive experience.

Malcolm has also become a good friend since we met a couple of years ago when we were both speaking at the same conference, and he very kindly invited me to join the Gang, and two week’s ago I  became a “Trainee Scientist” for the day at Worthing Hospital.

 My other half, co-incidentally also called Malcolm, and I drove down there together, and we were given the warmest welcome imaginable. Harvey Gang’s Malcolm gave me my very own medical white coat to keep forever, an official hospital name badge, and a wonderfully generous goody bag stuffed with all sorts of treats and more.

We then spent the next two hours in the Path Labs where I learnt so much, saw even more, and asked all the questions that my eight-year-old self had once needed to ask all those years ago.

We watched the blood samples arrive at the lab. Just some of the 15,000 blood samples they test every single day. Just think about that for a moment, fifteen thousand people having blood tests earlier that morning just in the Worthing area alone.

They reckon that needle phobia is one of the most common of all phobias, affecting between 3.5% and 10% of adults. It’s difficult to be more accurate than that, because needle-phobic people like me  are generally deeply ashamed and embarrassed about it, and so we don’t always own up to it. Instead, we bite our lips, we steel our resolve and we brazen it out the best we can. Or we don’t.

There aren’t any figures for the numbers of people who simply don’t turn up for their blood tests, or even worse, the ones who don’t even go to their GP with a health concern in the first place. These aren’t decisions that are taken lightly, and I’ve sometimes been very close to opting out altogether myself. Even as a Stage 4 Cancer patient, death often seems less frightening than a blood test.

Looking at the figures we have of those 15,000 blood tests,  it means that somewhere between 525 and 1,500 people that morning will have coped with what is to them an utterly terrifying ordeal.

I stood in the Path Lab for a moment taking it all in. On every surface I could see, there were test tubes filled with blood samples, hundreds and hundreds of them. Then something else occurred to me – I was dealing with this whole experience of being surrounded by samples of blood, something I normally can’t even bear to look at or contemplate, and I was taking it all in my stride, my heart wasn’t racing and I didn’t feel my whole body screaming at me to run as far as I could. The sheer scale of the numbers of people having blood tests every day shifted something in me, it somehow normalised the whole process in a way that’s difficult to explain. My eight-year-old self had felt singled out, picked on and attacked every time blood had to be taken, yet now I was seeing it differently.

Much of the work involved in blood testing is now done by machines, and Malcolm walked us around the

This brand new laboratory machine is called Harvey, and that’s a picture of Harvey siting on top of it

department explaining everything we wanted to know on the way. We saw blood samples going into the centrifugal machines where it is spun for several minutes at an equivalent of 80 miles per hour to separate the plasma from the rest of the blood, and learnt how a plug of gel ensures the two are kept apart throughout the testing process. We watched through glass windows into the machines as probes were used to sense and to measure certain properties within each sample. We saw how the results appear on the nearbyIT monitors and what each of the results can mean.

We saw how the machines self-wash themselves between samples to ensure that there is no cross-contamination that might risk false results. We observed how calcium is removed from blood samples and then added again before warfarin levels are tested and why. We saw the blood transfusion stocks, probably gallons of blood altogether. I stood there in fascinated wonder instead of fear, looking at the neatly stacked blood bags, ready to go at the drop of a hat when someone needs it as a matter of life or death. Malcolm showed me a tiny bag of blood, on stand-by for a new-born baby who may need it to survive. I know so many children who are only still with us because a similar tiny blood transfusion bag had been available when they needed it most.

We saw so much and learnt even more. I never knew that plasma carries all the chemical information while the rest of the blood, the red and white cells, carries the biological information. So, if they are testing your liver or kidney function it’s the plasma they’ll be looking at closely to identify the waste cells deposited by those organs as your blood circulated through them. I learnt about the different types of white blood cells, the leucocytes and neutrophils, what they look like and what they do. Under a microscope I was shown how to recognise different cells, how red blood cells have no nucleus so they are see-through, and what platelets look like and how they work to form clots and scabs which seal wounds. All the questions my eight-year-old self had once needed to ask were answered plus many, many more.

However, for me the most profound impact of the whole day was to meet the staff, and to witness the care and dedication they bring to their work to make sure that every one of those 15,000 people each day have their blood tested correctly and accurately to enable a prompt diagnosis and an appropriate treatment. That was the missing piece of the jigsaw I’ve needed for all these years. That they are on my side and trying to help me. Clinicians take my blood to make me better, it’s as simple as that, so why did they hold me down, escalate my fears, and never once tell me why they were doing what they had to do?

Sometimes it’s all about re-framing, being helped to look at something in a completely different way. For me, those early experiences of blood tests had been so traumatic that the fears and the panic and the sense of being victimised had become so absorbed and entrenched that I have not been able to look at the whole process with any semblance of rational thought. Every time someone has approached me with a needle the sense of horror I felt as a small child has overwhelmed me and made it incredibly difficult to manage. Malcolm and Harvey’s Gang has enabled me to gain a completely new perspective in the space of two hours, something I’d never have thought possible.

There’s me, sandwiched between my two favourite Malcolms in the whole wide world

Harvey’s Gang continues to work with seriously ill children in Worthing, and the programme is now being rolled out to other hospital trusts throughout the UK, with 24 more already on board and a further 17 in the pipeline. The gift they are giving each of those children cannot be overstated, they are giving them the understanding and the knowledge they need to be able to cope with their frequent needle experiences calmly and without fear. It is healthcare at its absolute best, doing preventative work. The children who join Harvey’s Gang as Trainee Scientists are highly unlikely to develop the life-long needle-phobia and the sheer terror it brings.

Since I spent that day in Worthing, I’ve told so many people about how fabulous it was and the difference it has made to me. I’ve been saddened to subsequently hear from several parents about their own child’s difficult blood test experiences. It seems that frightened and distressed children are still routinely being held down and restrained instead of their fears being addressed.  The lifelong harm this can do to children is simply not acknowledged or taken seriously, and it would be good to find a better, kinder and more effective way of doing things.

The other thing that struck me was something else Malcolm told me. 40 years ago, before blood testing was automated, each Path Lab could only deal with a fraction of the number of blood samples each day, perhaps 30 or so was about average. That means that we are now doing 300 times as many, which is the equivalent of having gone from a person having one blood test per year to having one almost every day.

Malcolm also told me that 80% of those 15,000 daily blood test results are completely normal, which did make me wonder how many of those blood tests are absolutely necessary? Maybe that’s something we need to look at and question, and weigh up the level of trauma and ordeal for many against the probability of a blood test providing useful clinical information.

I wish every child and every needle-phobic adult could join Harvey’s Gang, but that’s probably not sustainable. I was therefore delighted to hear  good friend, Helen Sadler, had taken Monkey Wellbeing to join Harvey’s Gang a week beforehand, and there will soon be a video of it to share far and wide with children everywhere. I hope they remember all the grown-ups with eight-year-old memories too.

 

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Yvonne Newbold
Yvonne Newbold

 WHIS Ambassador for Learning Disability, Autism and Families

NHS England Learning Disabilities and Autism Advisory Board 

Patient Experience Network National Award for Outstanding Contribution in Patient Experience 2016

LDT Learning Disability Champion 2015

HSJ Award – Top 50 Inspirational Women in Healthcare 2014

 

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