Dr Alison Finch is a nurse and researcher from University College London Hospitals NHS Foundation Trust (UCLH). She explains how ambulatory care is positively impacting young people’s experiences of treatment and how a CCLG Special Interest Group has been formed to develop this care nationally.
In the UK, intensive cancer treatment has long centred around inpatient care. However, since the 1980s many cancer pathways in the USA have been delivered on an outpatient basis. Ambulatory cancer care, or simply ambulatory care, has since become a mainstay in many NHS adult treatment centres. Founded on offering choice and a more personalised experience, it offers systemic anticancer therapy that traditionally requires inpatient care, in an outpatient environment, with patients staying in a residential setting overnight. This could be their usual home, or in a nearby hotel, apartment or home-from-home close to the hospital. Ambulatory care has been made possible since the advent of programmable portable infusion pumps and more sophisticated supportive care medication.
Development
An ambulatory care service was set up at UCLH in 2012 to support young people aged 13-24 and their families. It drew on the expertise of adult colleagues who’d established the first NHS ambulatory care service in the early 2000s, modelled on a children’s service at Memorial Sloan Kettering Cancer Center in New York. It works by getting young people actively involved in self-monitoring and self-surveillance during cycles of treatment (for example, recording fluid input and output) – clinical checks that, if staying in hospital, would usually be done by the healthcare team. Young people attend the ambulatory care unit each day for an infusion change or clinical review – after which, if they remain well, they return to their residential setting overnight.
Research
With over a decade of ambulatory care experience, the team at UCLH wanted to better understand the benefits of this care pathway for young people and their families. I received funding from the National Institute for Health and Care Research (NIHR) as part of a doctoral fellowship to research the experiences of young people, families and staff receiving and delivering ambulatory care. We wanted to see if changes were needed to better meet the needs of families at UCLH, and to inform the development of this care pathway UK-wide. My research team included young people and family members who became co-researchers, actively involved in every stage, with charities Young Lives vs Cancer and Teenage Cancer Trust becoming collaborators.
The research found that ambulatory care contributed positively to young people’s experience of cancer treatment. It helps keep young people rooted in their usual lives and communities, and together with the support of an accompanying parent, sibling or partner, fosters young people’s sense of self and their autonomy – particularly important at this developmental stage of life.
The research, however, also evidenced the need for greater psychosocial support for companions – those accompanying a young person – with a widening of healthcare professionals’ delivery of ‘age-appropriate care’ to be more encompassing of young people’s support networks.
What’s happened since?
Since the research finished in 2022, a national Special Interest Group has been set up by CCLG, bringing together health professionals interested in developing both children and young people’s ambulatory care. Since it’s first meeting in October 2022, it now has over 80 members.
Ambulatory care is in the process of being launched, piloted or considered within many principal treatment centres in England and Wales. The Christie, in Manchester, already has an established teenage and young adult service, and is increasing the number of protocols they can offer in ambulatory care.
Further research, funded by CCLG and Young Lives vs Cancer, and led by Dr Jess Morgan, at Leeds Children’s Hospital, and Dr Gemma Bryan, at the University of Surrey, aims to understand how ambulatory care is currently used across the UK and how to help hospitals design their ambulatory care services for children.
Further details about Alison’s research can be read in an online resource called ’Redefining cancer care with young people’.
How at-home treatment has helped us
Jess Formby’s daughter, Arabella, was three years old when she was diagnosed with acute lymphoblastic leukaemia (ALL) in 2023. Jess tells us how being trained to deliver Arabella’s IV chemotherapy at home helped her family.
A short time into Arabella’s treatment for ALL, my husband Eric and I asked one of the advanced nurse practitioners (ANPs) whether there was any financial help with travel to and from hospital as we were finding it financially hard, and we were visiting the hospital near enough every day for chemo and appointments. One of the IV chemos Arabella was going to start, cytarabine, was going to be given every day for four days with a three-day break. So, the ANP suggested training us to give the IV chemo at home. We were a little hesitant at first, but if it meant less time at hospital for Arabella, then it was worth trying.
We found the process easy – all the nurses were supportive, and we were both trained and signed off over a couple of weekends (the chemo started on a Friday). The nurses were so helpful and thorough, they showed us what to do from setting up the tray, drawing up hepsal and saline, to administering the chemotherapy. Then we both separately set up the tray and administered the chemo while being supervised before being signed off. We were given everything we needed to take home, from sterile wipes to a sharps bin, and we would collect the chemo every weekend. Arabella has a portacath so we still needed to have a gripper placed before the chemo could be administered, which the nurses did, but this was no problem as we would get her gripper inserted on the clinic day and then take everything we needed home.
How it’s helped our family
Being able to administer chemo at home was a massive help. It really helped Arabella as she was more relaxed in her home environment. It meant less time travelling (it takes us approximately 45 minutes each way) and less time in the hospital. It also helped financially, as we were using less fuel than we had been travelling to and from hospital.
Thankfully, we found no major challenges. We felt well prepared and well equipped, and we knew the nurses were only at the end of the phone if we needed help. Sometimes, a line doesn’t bleed back initially when accessing, but we were made aware of this and knew to flush the line with saline first then bleed the line back so when it did happen, we didn’t panic and could handle the situation.
If you feel you’d be able to administer chemotherapy at home, then I’d say please ask your team. It isn’t as scary as it first sounds, and it’s a much nicer experience for your child, especially in the beginning when you might feel like you live at the hospital! I also felt it gave us some sort of control in a situation where you feel like you have none. If you’re newly diagnosed, try to remember there’s light at the end of the tunnel. Keep going and stay positive. You’ll get through this. We’re seven months into treatment now and we’re hoping things will be so much easier. We’re due to go into our maintenance stage, which for Arabella means at-home oral chemotherapy.
We want to raise awareness of ALL and money to fund further research to understand it and develop new treatments. We believe CCLG is doing an amazing job in raising awareness and funding research, and we – and our friends, family and supporters – wanted to help. That’s why we set up Arabella’s Leukaemia (ALL) Research Fund with CCLG to support other families in the future.
From Contact magazine issue 102 - Spring 2024
