No young cancer patient should face treatment alone, say cancer charities

Young people are having to attend cancer treatment and appointments alone as a result of the coronavirus pandemic, putting them at unnecessary risk of confusion, fear, and isolation, the two leading charities for young cancer patients have warned. 

Young people from across the UK who are being supported by Teenage Cancer Trust and CLIC Sargent have come forward with heart-breaking accounts of having to face cancer alone. The two charities are supporting 16 to 25-year-olds who are receiving the news they have cancer, attending appointments or facing treatment for cancer on their own - sometimes for weeks at a time.  

22-year-old Kathryn, who is just about to undergo a stem cell transplant miles from home in Manchester says the prospect of being isolated in hospital for up to six weeks without her mum by her side is extremely difficult to comprehend.  

Kathryn, who has Hodgkin lymphoma and is from Gwernaffield in North Wales, said:

“It’s going to be extremely difficult going from shielding at home with my mum, dad and my brother around, to not having my family there in person. I know from friends going through similar things that having family there is really important and I won’t have that at all.” 

Sophie, 24, was first diagnosed with leukemia in 2015 and in February 2020, just before the first lockdown, relapsed for the second time. She was told she needed CAR-T cell therapy and would have to be treated at the Christie in Manchester, 70 miles away from home.  

Sophie said:

“We had to travel to Manchester, so my mum drove me, we got to the door and I had my suitcase because I knew I was going to be admitted around 5 weeks for me to have the CAR-T. My mum was crying, I was crying and she had to leave me at the door and drive off. I was struggling alone with this suitcase…. my Mum was terrified leaving me because she was probably thinking ‘I can’t be there to comfort her’ and as well, if things go wrong, would she be walking back out of the hospital?” 

Teenage Cancer Trust and CLIC Sargent know that having to go to appointments and treatment alone has been one of the biggest concerns for young cancer patients throughout the pandemic. In a poll on a Facebook support group for young people CLIC Sargent supports, 90% said they had experienced treatment in hospital alone. Both charities have also heard from a number of young people who have shared the impact attending appointments alone has had on them.  

Kathryn and Sophie are sharing their story as part of Teenage Cancer Trust and CLIC Sargent’s ‘Hand2Hold’ campaign. The campaign aims to ensure that young people, wherever safe and possible, have a parent or other family member, friend, or partner with them during appointments, scans and treatment. The charities have asked the Cancer Ministers in all four nations, via an open letter published today, to make a commitment that where possible, young people can have a hand to hold throughout treatment and beyond. 

Dr Louise Soanes, Chief Nurse at Teenage Cancer Trust, said:

“We understand that the coronavirus pandemic means we need to take extra precautions to protect those who are most vulnerable, but know that in some places, having that important hand to hold is allowed whereas in others, it is not.   

“Having cancer treatment, receiving a diagnosis or learning or hearing how you’re responding to treatment, can be for many a scary and isolating experience. 

“Young people then need to share often very complex information - some of which they might be still processing - with family members, friends or a partner.  

“That’s why, together with CLIC Sargent, we want to dispel the disparity so all young people, where safe and possible, have that crucial loved one with them and a hand to hold, particularly during some of the most difficult times of their life.” 

Helen Gravestock, Associate Director of Policy, Influencing and Voice at CLIC Sargent, said:

“Young people have been telling us that one of the worst things about having cancer during the Pandemic is having to go into hospital alone - sometimes to hear bad news. CLIC Sargent’s social workers have been supporting these 16-25 year olds when they go into hospital. We also know how tough it is for their parents and loved ones not being able to support them. Our social workers have been on the phone to worried parents as they sit in hospital car parks waiting for their son or daughter to come out. You don’t stop worrying about your child just because they’re adults. 

 “That’s why CLIC Sargent and Teenage Cancer Trust are working together to raise awareness of the experiences these young people with cancer are facing and asking the public to show their support by signing our pledge.” 

Teenage Cancer Trust and CLIC Sargent are asking for members of the public to help make sure no young person faces cancer alone by pledging their support for the campaign. 

Dr Soanes continues, “Like Kathryn, some young people are having to face cancer without a family member by their side, with Teenage Cancer Trust’s nurses and Youth Support Coordinators doing all they can to provide comfort and support. Whether it’s attending appointments with them, helping them share updates with their family, or providing emotional and holistic support – they are doing all they can to ensure no young person faces cancer alone. But this isn’t enough. Show your support for young people with cancer by signing the pledge for a #Hand2Hold” 

Helen continues, “If you are a young person with cancer who has had to face appointments, treatment or diagnosis alone, like Kathryn and Sophie, then please be sure to speak to your CLIC Sargent social care team who can also help to provide support through this tough time.” 

Find out more about Hand2Hold visit: www.teenagecancertrust.org/hand2hold or www.clicsargent.org.uk/hand-2-hold

 

ENDS  

For more information, for interviews with a charity spokesperson or young person affected, please contact: 

Teenage Cancer Trust 

Lauren Snaith, Media & PR Manager (Policy & Campaigns), on 07852 998234 or email [email protected]  

For out of hours media enquiries, please contact the Duty Press Officer on 0757 225 1265.   

CLIC Sargent 

Emma Gibbons, Media and Communications Officer, on 07932 666163 or email [email protected]  

 Notes to Editor  

• You can view the open letter here: www.teenagecancertrust.org/hand2hold 

• Aged just 20, Kathryn was shocked when a scan found a 12cm x 14cm mass in her chest, and doctors diagnosed her with Hodgkin lymphoma.  A course of intensive chemotherapy led to her being declared cancer-free later that year, and she and her family celebrated.  But just two months later in January 2020 she started to feel unwell and was devastated when tests confirmed that the cancer had returned.  Kathryn finished her 20th, and final session of radiotherapy just last month and is now waiting for a stem cell transplant.  

• We know that having to go to appointments and treatment alone has been the biggest concern for young cancer patients throughout the pandemic.  In a recent Facebook poll of 100 young people CLIC Sargent supports, 90% said they had experienced treatment alone in hospital during the pandemic.  

About Teenage Cancer Trust  

• Cancer isn’t stopping for coronavirus and neither is Teenage Cancer Trust. The charity has launched an urgent fundraising appeal to raise £6 million to maintain its frontline services. Donate today: www.teenagecancertrust.org/donate  

• Every day, seven young people in the UK aged 13 to 24 hear the words “you have cancer”.  

• Teenage Cancer Trust puts young people in the best possible place, physically, mentally and emotionally, for their cancer treatment and beyond.   

• We do it through our expert nurses, support teams, and hospital units. And we’re the only UK charity dedicated to providing this specialised nursing care and support.  

• Teenage Cancer Trust is a registered charity: 1062559 (England & Wales), SC039757  

About CLIC Sargent 

When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. CLIC Sargent is the UK’s leading charity for young cancer patients and their families. We provide specialist support, to help and guide each young cancer patient and their family. We will fight tirelessly for them, individually, locally and nationally. For more information, visit  www.clicsargent.org.uk  

Note to sub editors  

Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above.