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Childhood Eye Cancer Trust Support Workers: helping UK families and individuals through treatment and beyond
Monday March 29, 2021
A retinoblastoma diagnosis is distressing for a family, its effects often lifelong. CHECT Support Workers help families and individuals in the UK, from diagnosis and throughout life. Support Service Manager, Lesley Geen, describes how CHECT Support Workers collaborate with the medical team to care for the whole family, and the different support services offered at each stage of life.
Three-year-old Tyraah leads Theo, aged 16, by the hand.
I qualified as a Registered Adult and Sick Children’s Nurse in 1981. Apart from a few breaks, for bringing up my children and other things life throws at us, I worked as a nurse from 1981 until 2006. Mainly in paediatrics, and paediatric oncology in particular.
From there I worked for a large national children’s charity, managing and developing children’s services in one area of England. But how I missed direct contact with children and families! In 2012 the opportunity to work for the Childhood Eye Cancer Trust (CHECT) arose and I was appointed to a 3 day a week role as support worker. A brilliant way to bring together my working experience as a paediatric oncology nurse and in the voluntary sector. Almost nine years later I work full time as the support service manager for CHECT, continuing to work directly with families and individuals affected by retinoblastoma.
I believe in the importance of encouraging all people, including children, to be valued as the special individuals that they are.
About The Childhood Eye Cancer Trust
We are a small team of nine people, working hard together to:
Provide support and information to families and individuals.
Fund research into the prevention and treatment of retinoblastoma.
Raise awareness among health professionals and the public to help drive early diagnosis.
Influence policy to improve services for patients.
8 members of the CHECT Team, in December 2019. This last team photo before the COVID-19 pandemic was the only one including Support Worker Sarah Turley. Left to Right: Sarah, Patrick, Lesley, Lizzie, Kat, Petra, Beth, and Diane.
The CHECT Support Service
The Childhood Eye Cancer Trust offers support to families and individuals in the UK affected by retinoblastoma, from the point of diagnosis and for the rest of their lives.
There are two specialist centres for retinoblastoma in the UK; The Royal London Hospital (RLH) and Birmingham Women’s and Children’s Hospital (BWCH).
CHECT are extremely fortunate to have excellent collaborative working relationships with the retinoblastoma teams, with a support worker specifically working alongside each team. I work with the team at RLH, my colleague, Sarah Turley, works with the team at BWCH. The team members we work particularly closely with are Clinical Nurse Specialists (CNS), play specialist (called child life specialists in other countries), specialist orthoptist, psychologist, team administrator and consultants.
It is important for families to know we are not part of the clinical teams, but we work very closely with them. This enables a holistic approach, building positive, trusting relationships so families know issues discussed with us can remain confidential. But also, on occasion, we can act as intermediaries as well as discussing their issues, concerns and support needs with the teams too.
What do we do?
It is probably easiest to break our roles down into the support we offer at different life stages, although there is an inevitable overlap of course!
We regularly receive support calls and emails about possible diagnosis of retinoblastoma in a child, after a parent or someone else has noticed a symptom and found information on the internet. Whilst there is still more to achieve, this does reflect an increased awareness of signs and symptoms here in the UK. In these circumstances, we have sensitive conversations signposting to local services, such as GP, optician or local hospital emergency department, with resources and an understanding of what to expect. It is infrequent that these enquiries result in a diagnosis of retinoblastoma, but vital that families know where to go to find help.
Diagnosis and Treatment
This is where we start to work closely with the retinoblastoma clinical teams to offer families support. We can be in the privileged position of meeting families at their first hospital visit, working mainly with the Clinical Nurse Specialists to ensure an appropriate introduction.
Communication is vital in our role, with the teams, and with families. This enables us to offer the best support to families at the right time. The clinical teams are very supportive, and frequently refer families to us.
A diagnosis of retinoblastoma is shocking, distressing and frightening for a family. It is therefore extremely important we offer and deliver support in a timely fashion, working with others to ensure families aren’t overwhelmed with the number of people they meet, and services offered.
The most important part of our role at this time is to say hello so the families have met us, albeit briefly very often, to let them know there is extra support available when they are ready to receive it. Meeting face to face is important where possible as we may not meet families again for some weeks if they receive initial treatment at a local children’s cancer centre closer to home. This forms the basis for a long and trusting relationship with families.
We are truly passionate about working with and for children, young people and their families, keeping them at the heart of everything we do.
The overall aim of this collaborative working is to provide a positive and supportive environment to help families, and to meet a range of needs at appropriate times, to help
What Support Do We Offer At This Point?
We offer support to the whole family; emotionally, practically and with financial issues. This can be through face to face contact at day case and outpatient clinics, as well as by telephone, email, messaging services and Social Media.
The first thing families receive from us is a folder containing leaflets and information about support we can offer, including stories from families who have been through similar treatment. They offer tips for making things easier, and hope for the future as families can read about children who have now completed treatment.
We offer a range of support, including: investigating financial support for families in the form of grants and benefits, and writing supporting letters when appropriate for things such as the application of a Blue Badge (a scheme that allows sick and disabled individuals and carers to park closer to their destination). We signpost to specialist organisations, and support families to apply for a much needed holiday or specialist toys and other equipment where needed.
Very often regular telephone contact is important for families to offload, to talk through how they are feeling, or managing the day to day practicalities of having a child receiving cancer treatment.
Communication and understanding the roles of others in the clinical teams is vital to our role.
Liaising with other professionals involved in the care and support of families is extremely helpful to all involved. For example, working together with the CLIC Sargent Social Worker based in the child’s local hospital, who offers similar support to CHECT. This ensures support services are not duplicated, but nor do families fall between professionals, where one thinks another is offering a particular service.
A parent may ask us about resources or help for a child or their sibling who is struggling with some part of the treatment or issues arising from same, such as separation anxiety, poor sleep, behaviour problems or vision concerns. Liaising with the play specialist, the specialist orthoptist, the CNSs and the psychologist when these issues arise ensures a holistic approach to caring for families.
Understanding where emotional support and counselling or psychology can overlap is so important, to make sure families are referred to the right professional at the right time. In turn, the other professionals we work with also ensure that families come to us for the support we can provide.
Sarah and I are also privileged to be involved in multi-disciplinary meetings at each hospital, building on this holistic approach to support.
Lesley talks with a family at the hospital on EUA day.
One extremely valuable support service is time. We ensure we dedicate the time to speak with and listen to families, as much as they need. This can be particularly important on a long day waiting for examinations under anaesthetic (EUA) when entertaining a young child, managing a hungry, crying baby, waiting for results and the emotional feelings that accompany these appointments can become overwhelming.
We don’t need to talk about retinoblastoma and the impact that has. We can have conversations about family life, hobbies, what’s on TV or anything else that distracts from what can be an extremely anxious day. It’s here that having knowledge of other family members makes a difference. We do our best to support families completely individually; no support plan is the same as any other. Knowing the names of siblings, understanding needs of other family members, perhaps a grandparent who is unwell, helps families to know we care about them and what matters to them.
The COVID 19 pandemic has brought many challenges to our working life, not least having to work from home for several months in 2020. During lockdowns when we have been unable to meet families face to face at hospital clinics, Sarah and I held regular Storytime sessions over Zoom, reading stories to young children, their siblings and parents. These were often the highlight of our working weeks! We have particularly enjoyed celebrating birthdays with rowdy virtual renditions of the ‘Happy Birthday’ song, staggered and out of tune!
A three year old girl watches Lesley read a story on Zoom.
When children move from regular examinations under general anaesthetic to being examined awake, this can bring its own fears and concerns. Parents often feel concerned about a longer gap between appointments, being seen in a different setting and, perhaps, meeting new staff. Children at this stage may soon be starting school and beginning to rely a little less on parents as they grow in independence.
We are able to support by being around to chat, to catch up on family life and any ongoing changes. This can be a time when one or other parent, having put all their time and emotional resources into getting through the treatment and EUA periods, needs and is ready to receive more formal counselling or psychology support. We may pick up on this need in conversation and speak to other team members to make the best plan for whomever needs it.
Continuing to see the children, who we may have known since they were young babies, is a particular delight on these occasions. Talking to them all about the services we offer outside of the hospital setting, such as members days and weekends or referring to other charities who offer different activities where children can have fun and develop independence. Building on the relationships that have begun at a difficult time in a family’s life is a very satisfying part of our roles.
Teenage years are notoriously difficult for many, and more so if you feel different from your peers. At CHECT we believe strongly in active participation from our young members, and enjoy giving them a voice that matters in the charity. Collaboration has continued outside of the hospital when we have worked alongside CNSs, psychologist and play specialist at CHECT teenage events.
We have held two teenage residential weekends with a number of objectives, including, to help increase self-confidence and esteem, meet other young people who have had retinoblastoma, sharing experiences and having fun!
One comment from a teenager attending a weekend was “Thank you for organising such a fun and effective weekend, I completely enjoyed myself and made great friends.”
In 2018, we developed a teenage council. Named by the young people, The CHECT Teen Focus Council (TFC) offers an opportunity for young people, aged 13-18 years, who have had a diagnosis of retinoblastoma, to help improve the services offered to young members of the Childhood Eye Cancer Trust.
The TFC meets 3 or 4 times a year to plan events, explore what is important to our younger members, and action any suggestions made to benefit the teenagers and the charity. Our CHECT teen website is designed and contributed to by our teenage members.
Outside of pandemic restrictions, we also hold occasional days out for our teenagers.
A group of teenagers at a CHECT Teen event.
We also offer support to adults after retinoblastoma, aiming to make this as individual to each person and circumstance as possible. We signpost to specialist services such as education and employment support, particularly where someone has a visual impairment as a result of retinoblastoma or its treatment.
We also work closely with the genetics teams at both hospitals and ensure that any questions about starting a family or other genetic issues are managed by the appropriate medical professional. We offer support around late effects of retinoblastoma or its treatment, again by appropriate signposting. This is particularly important for adults from their mid to late 20s onwards, who may not have been in contact with retinoblastoma teams for some time. We also get to know our adults after retinoblastoma, or indeed continue trusting relationships built during treatment or at children’s outpatient clinics.
Outside pandemic restrictions, there are also organised days out for our adult members affected by retinoblastoma.
Members Days and Weekends
As part of our support service, when circumstances allow, CHECT offer members or family days, organised regionally for our members. This brings together different families with similar experiences for a fun day out and the opportunity to talk about those experiences. For children living with an artificial eye, this is often a good opportunity to meet others with their own ‘special eye’. Our most recent Regional Members Day was held in London in January 2020.
We also present CHECT Champion awards to children who have retinoblastoma and to their siblings. The awards acknowledge how proud their parents, wider family and indeed their CHECT support workers, are of their resilience and what they have achieved during difficult times.
Every two years, where possible, we also hold a weekend for CHECT members of all ages to come together to meet, have fun and adventure with various activities, perhaps attend a workshop, and just have some downtime. These are designed to be fully accessible and are very well received, with approximately 250 members attending the last such event. We are all exhausted at the end, but have such a great time!
A Final Word
Working for CHECT in this role is so diverse, with no two days being the same. I have learnt so much from colleagues, families and individuals, with probably my steepest learning curve being how best to support children and adults with a visual impairment. I have learnt, in all areas of my life, how important it is to learn from others and, hopefully, to pass that learning on.
It is an absolute pleasure and privilege to support so many families and individuals, being there at one of the most traumatic times in a family’s life. Sharing their stories and building very special relationships over many years with people who I know will stay with me for a long time. All of this is something I will never take for granted.
Lesley shares time with a child during a Family Day.
About the Author
Lesley Geen qualified as a Registered Adult and Sick Children’s Nurse in 1981. She worked primarily in paediatrics, and paediatric oncology in particular. After leaving nursing in 2006, she worked as a children’s services manager at Barnardo’s, a national charity that works with vulnerable UK children to help them stay safe and thrive.
In 2012, Lesley joined the Childhood Eye Cancer Trust team, uniting her lifelong passion for paediatric oncology nursing and her commitment to the Charity sector. She serves as London-based support worker, and full time Support Service Manager.