Young people facing cancer appointments and treatment alone during the pandemic have described the “scary” and “difficult” experience, as charities urge leaders to ensure patients are supported.
The Teenage Cancer Trust and CLIC Sargent have written a joint open letter to health ministers in the four nations of the UK asking them to pledge that young cancer patients will not have to hear news of their diagnosis or experience treatment on their own.
The charities, which are launching their “Hand2Hold” campaign as part of their call, said they want to “dispel the disparity” in support in different areas.
The letter states: “We commend the diligent work of the NHS and its staff to ensure that vital care continues, and are extremely grateful that in many cases, staff and trusts have gone above and beyond to help mitigate this difficult situation for young people with cancer and ensure there is some sort of accompaniment – even if virtual.
“We want these examples of good practice to be encouraged throughout the UK.
“We are asking you as minister for health in each nation, to commit to young people with cancer that they should not have to hear the news they have cancer, or face their treatment alone.”
Some worried parents have had to sit in hospital car parks waiting for their children to emerge from appointments, said Helen Gravestock, associate director of policy, influencing and voice at CLIC Sargent.
She 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.
“Our (CLIC Sargent) 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.”
Hodgkin lymphoma patient Kathryn Rodwell said it will be “extremely difficult” for her to be in Manchester away from home for weeks to undergo a stem cell transplant.
The 22-year-old from Gwernaffield in North Wales, said: “I know from friends going through similar things that having family there is really important and I won’t have that at all.”
Fellow cancer patient Daniela Alves recalled having to go through chemotherapy without visitors.
The 21-year-old, from north London said: “Going through my first week alone was quite scary. You don’t know what symptoms you’re going to feel first, you don’t know how you’re going to react to the pain.
“It was very daunting.”
Dr Louise Soanes, chief nurse at Teenage Cancer Trust, said in some areas “having that important hand to hold is allowed whereas in others, it is not”.
She said: “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.”
The charities are asking members of the public to support their campaign.
An NHS spokeswoman: “The NHS is absolutely clear that young cancer patients should be able to have friends and family supporting them at appointments, which is why the national guidance is explicit that this should be offered, in a Covid-safe way.
“It is important that families know cancer treatment is continuing across the country, so that young people can come forward for the care they need, with the right support.”