Now the IBMS is the custodian of Harvey’s Gang, we look at its amazing legacy and the positive role it has to play in the future.
In 2013, at the age of six, Harvey Buster Baldwin was diagnosed with acute myeloid leukaemia. Treatment for this complex and aggressive cancer is tough and intensive, often involving chemotherapy, radiotherapy, bone marrow transplants and blood transfusions. For Harvey, it entailed an extended stay in Worthing Hospital on the West Sussex coast, being attended by a small army of white-coated haematologists, paediatricians, radiologists and other specialists.
Despite the rigours of his treatment and the swirl of adult activity around him, Harvey remained a curious little boy. After the nurses took yet another sample of blood from him, where did it go? What did they do with it? Why did they need to do it so often? How could they tell what was going on inside his body? The best way to answer all his questions was to show him the place where all this vital and mysterious work was carried out: the haematology and blood transfusion laboratory at the hospital.
A tour of the lab was quickly arranged. Harvey was shown the stages of the journey his blood took, the specialist equipment that processed it and analysed its constituent parts, and what the results meant. He peered down a microscope at his own blood, its platelets, red cells and white cells. And he got to do all this while wearing his own lab coat.
In that moment he was part of the multidisciplinary team. He was, in a small way, understanding and participating in his own treatment.
Eighteen months later, Harvey passed away. But his child-like inquisitiveness had given rise to a simple idea: would similar lab tours be useful for other children undergoing intensive treatment for severe diseases? Malcolm Robinson certainly thought it would. As the Chief Biomedical Scientist for Blood Transfusion at Worthing Hospital, he was responsible for organising that initial tour, which turned out to be such a positive experience for Harvey that Malcolm was soon asked to conduct more tours for other children and their families. This was the start of Harvey’s Gang.
Harvey’s Gang became a formalised arrangement in 2014, managed by Malcolm, his wife and two other trustees. Since then hundreds of young patients in hospitals around the country have been treated to tailored visits to their local labs. They get an insight into the processes, including haematology, chemistry, blood transfusion and morphology. They can even bring their own blood samples and watch them undergo analysis. Each patient gets a goody bag and an attendance certificate, and the all-important lab coat.
It’s not just the children that benefit; it helps the wards and pathology to improve their engagement with patients and their parents, and to build stronger internal relations and a better understanding of each other’s work.
Nottingham University Hospital (NUH) conducted its first Harvey’s Gang tours for young patients in 2018, though, like everybody else, they had to take a break during the COVID pandemic. The resumption of the lab visits was widely welcomed, not least by 13-year-old Charlie Frieland, whose tour earlier this year was especially memorable thanks to the vivid report he wrote of his experience for his school science department.
Charlie was diagnosed with chronic kidney disease in 2018, then end-stage renal failure in 2022 and is now on the transplant waiting list. His treatment has required countless tests and samples, unsurprisingly leaving him with a phobia of needles.
“For the last five years I have had literally hundreds of blood tests, and I hate it,” he said. “It’s not just the blood test itself that I hate, although I do, it is the wait for the results. My medications, treatment, diet and fluid restriction can all change based on my blood results, waiting for them and wondering if it will be good or bad news is like living in a temporary suspended reality… I’ve never understood what happens between having a blood test and receiving the results.”
An ideal candidate for a tour of the lab, Charlie, wearing the requisite Harvey’s Gang white lab coat, learned how the staff process more than 8000 samples a day, and how his own samples can require up to 35 different tests. “The labs are a labyrinth of high-tech chemistry machines,” he said, but “in a world reliant on technology and computers it was refreshing to see that microscopes still have a place.”
What did he take away from the tour? “Visiting the biomedical labs really opened my eyes to the incredible work of the 200 plus pathologists at NUH. I now have a much better understanding of the missing link in my medical team and each time I have a blood test I can now picture what is happening and why. Not sure it will stop me hating blood tests though!”
Charlie’s parents also enjoyed the visit: “Our sincere thanks to the whole team not only for such an enlightening tour but also for the sensitivity and compassion shown to Charlie,” said his mum Melina.
Kate Cross, Higher Specialist Biomedical Scientist and Training Lead for Clinical Chemistry at NUH pathology services coordinates the tours. “The Harvey’s Gang tours are a great way for young patients to take a lead role in their healthcare by becoming a trainee biomedical scientist for the day and learning about what happens to their blood,” she says. “The tours cover chemistry, haematology and blood transfusion, helping patients in their treatment through education on the blood testing process and supporting the clinical teams in their management of patients by improving needle-stick phobia or improved patient knowledge regarding their treatment and care.”
Handing over
Ten years on from the first visit, now retired after more than four decades in biomedical science and handing over the reins of Harvey’s Gang to the IBMS, Malcolm Robinson has been reflecting on the positive effect the lab tours have had for children undergoing intensive treatment for rare diseases. “I’ve learned from the children themselves that it has helped them cope with their healthcare journey much better,” he says. “They’ve come to understand why samples are taken and they’ve gone from having complete needle phobias to making eye contact with the phlebotomist, talking about the weather or what they’re planning to do later.”
The small white lab coats that the children are given have also assumed something of a symbolic role. “It’s a sort of cape that helps them cope with this experience,” says Malcom. Wearing the uniform confirms their status as one of the gang. “It opens up their healthcare journey. They say hello to the staff, and the staff introduce themselves, and the faces become familiar and all of a sudden it becomes a much more personalised experience and they don’t feel so fearful.”
All of a sudden it becomes a much more personalised experience and they don’t feel so fearful
These visits can be just as demystifying for the parents, who are often just as confused and disconcerted as their children. “It also helps them to understand their child’s journey and what happens to their blood samples,” says Malcolm. Even seemingly minor changes, such as a result that took one hour last week taking two hours this week, can trigger parents’ deepest worries, but having an insight into the work of the lab can help ease their concerns. “We can explain it might be because it’s the afternoon and that’s when we get all our GP samples, so instead of having a hundred samples an hour we’re suddenly getting a thousand. Or the computer may have a backlog of previous work to validate, or one machine might be out of action. It could be any number of things, but it’s important to reassure them that when it takes longer it’s not necessarily because the results are worrying and need to be double checked.”
A secure foundation
With the IBMS now the custodian of Harvey Gang’s, Malcolm believes the new arrangement is the right fit for everybody involved. “Over the past six years or so we’ve had very close links with the IBMS. It started when they kindly sponsored the lab coats for the children. So right next to the Harvey’s Gang logo on the coat we also had the IBMS logo.” Given that it was always a small operation, with Malcolm himself doing most of the admin and promotion work, writing emails, sending out the letters, posting blogs and so on, his enduring ambition was to ensure that Harvey’s Gang would have a secure foundation for the future. “I needed a plan of action. When we talked with the IBMS, our vision for Harvey’s Gang fitted very well with what they had in mind.”
Suddenly people could see who worked in the lab and the benefits of that work
David Wells, Chief Executive of the IBMS, says that securing the legacy of Harvey’s Gang and ensuring it still has a positive role to play was the key concern for the Institute. “We were keen to make sure that the Harvey’s Gang initiative would not be lost.
We can see that it adds real value to our organisation and to our members because they clearly enjoy the tours and showing children around their laboratories. In terms of engaging with the public, it’s also an excellent way of showing off the work that we all do day in, day out.” In that sense, it’s a clear benefit for all sides, with the young patients engaging with their treatment, learning about the vital backroom work, and with biomedical scientists getting a valuable insight into the frontline impact of their efforts.
A key part of the IBMS pitch was to continue running Harvey’s Gang in the way the trustees wanted. “Lots of hospitals and labs up and down the country could run these events,” says David, “but it does need some central group to hold it together, making sure that the original intent behind it is preserved and supported, and clearly that requires resources.” As well as the day-to-day costs of running Harvey’s Gang, and ensuring the tours remain safe and effective, the lab coats, badges, goody bags and other items all need to be paid for. “We felt that we could do this as part of our engagement work, and our council wholeheartedly agreed that we should support the continuation of the initiative.”
Win-win situation
Building on the work that Malcolm has done in getting Harvey’s Gang to this point will also include making a success of the many professional relationships he has initiated around the country. “Our job now is to take over those relationships,” says David. “We’ve already appointed someone to help support Harvey’s Gang as it moves forward, to increase the number of centres that provide it, to secure more sponsorship and to make sure it has a good future.”
For Malcolm, another vital dimension to Harvey’s Gang is the continued promotion of the work of biomedical scientists. “I’ve seen the benefits not just for children and parents, but also for biomedical staff, particularly when Harvey’s Gang started getting seen in the press and on television. Suddenly people could see who worked in the lab and the benefits of that work.” A spin-off of this, he says, is that biomedical scientists started receiving more invites to join hospital committees. “Lab staff have all sorts of skills that are not often well utilised. Yes, we can project manage, we can prioritise workloads, we can work with other teams, we can look at where to save money.”
The best people to take Harvey’s Gang forward are those in the professional organisation dedicated to looking after the interests of biomedical scientists.
As well as promoting this generation of biomedical scientists it can also be a springboard for the next. “In terms of getting the younger people interested in biomedical science, I think Harvey’s Gang will be a great advertisement for what the IBMS does,” says Malcolm. In fact, a few of the children who have taken the Harvey’s Gang tour in recent years are already studying biomedical science.
“I think it’s a win-win situation,” says David. “I’m confident that our members will support what we’re doing and see it as a good thing for the Institute to get involved with. We can run Harvey’s Gang in a way that holds true to its values and builds on its success.”
Get involved in Harvey’s Gang
For more information on Harvey’s Gang, or if you would like to sign up to organise tours for your lab, please email [email protected] or visit harveysgang.com
Image Credit | Richard-Gleed