Suzanne Beattie
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Your Impact: Helen Richmond

Suzanne Beattie
Posted by
28 Feb 2014

Helen Richmond on researching Leukaemia in Children with Down Syndrome, working with families, and working with Bloodwise.

Please introduce yourself – what’s your role? What are your main responsibilities?

My name is Helen Richmond and I’m a Paediatric Research Nurse and Study Coordinator. The study looks at the particular haematology at birth of babies with Down syndrome. and the link to the biomarker which is present in some babies for only a few days after birth. This biomarker is a link to the increased risk of developing Myeloid Leukaemia of Down syndrome (ML-DS/M7/AMkL), which is highly curable under favourable conditions. I have been meeting as many new parents as possible, in most of our 18 recruiting sites across the country, to explain about the biomarker test and to seek informed consent. At such a sensitive time for families, I’m grateful many have given me a hearing. The participants have been enrolled for tailored follow-up until 5 years of age, or a completion sample nearest to that. The follow-up aspect has naturally grown with the increase in number of recruits. The study has recently closed to new recruits.

I enjoy meeting the parents and babies, receiving updates on how they are doing (and sometimes a photo!) and achieving the aims of the operational side of the study. It can be exciting being at the cutting edge of research, albeit the non-scientific edge! Helping to advance knowledge and care is rewarding. As this advance is one recruit and one sample at a time, it’s slow and painstaking, so a heartening aspect is the willingness and commitment to the research of participants’ families.

What’s the most memorable moment you’ve had in your job?

Being invited to a ‘thank you’ party following one of my participant’s recovery from AML which developed at 21 months of age.  It was such a joy to see her fully recovered and playing happily.

How does your work impact on patients?

At recruitment, I am the bearer of potentially very scary news, on top of what is for most of the parents I’ve met, an unexpected diagnosis of Down syndrome.  My role is to put the research into context, inform and enable informed consent, but for many I am someone who enters their life at a pivotal time, walks alongside briefly and disappears into the background, but is there for them if they want to make contact. For those families I haven’t been able to meet (Scotland, East of England), I am the contact point for queries.  The study follow-up reminds us all of each other at intervals! The result of each baby’s biomarker test informs the frequency of follow-up, with the aim of following the natural history of the significant factor in the development of leukaemia, as well as the haematology of young children with DS to spot the significant signs of problems developing. We hope to improve knowledge and care of babies and young children with DS. Children with DS are the biggest group of children developing AML.

How has engaging with us impacted on your work?

I hadn’t known until recently of the work being done with Bloodwise nurses and it’s good to be part of the team! I’m looking forward to the Shared Learning Day.

Can you tell us about something you’re working on at the moment?

I’m working towards the completion of participation stage, which is variable for each recruit, as its tailored to the child’s routine care. For those children without the biomarker at birth, its seeking an opportunity when a routine clinical blood test is due, so that the study can have a left-over sample, blood film and blood count. The logistics are interesting. For those children with a GATA1 mutation analysed from a newborn sample, or for those who have gone on to develop ML-DS. I’m working to continue their surveillance through their paediatric haematologist.

These prospective samples are enabling the research to investigate the haematology of newborns with Down syndrome and the natural history of the pre-leukaemic condition Transient Abnormal Myelopoiesis (TAM) and associated GATA1 mutation at birth. TAM either goes into remission or can development into ML-DS – which, if it’s going to develop, it does so occasionally in the first few days or weeks, more likely before the age of 2 and occasionally between the ages of 2 and 4, but not after that.

Thanks to everyone who helps make the study happen practically: Neonatologists, Community Paediatricians and their secretaries, Paediatric Haematologists, phlebotomists, clinical laboratory staff, nurses, R & D Department staff in each recruiting site, and the National Institute for Health Research - but most especially to the children and their parents.

Finally, is there something you would like to see Bloodwise do in the future (for nurses or for patients)?

Its lovely to be given this opportunity to thank everyone who have supported Bloodwise/LLR over the years with fundraising. This research wouldn’t happen without you. Thank you.

Thank you very much for your contribution to the newsletter and for all the amazing work you do! 

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