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Tuesday, 29 September 2020

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Teens with cancer missing out on vital psychological support

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VULNERABLE young people currently shielding are missing out on vital psychological support, sparking fears for their long-term health and prompting calls from leaders in teenage and young adult cancer care for urgent and on-going access to vital support services.

In a report launched this week, the charity Teenage Cancer Trust has called on the Government to provide essential specialist services as it warns that 53% of young people with cancer have struggled to access psychological support during the Coronavirus pandemic, at a time where isolation and anxiety are magnified.

The charity, which supports 13-24-year-olds with specialist cancer nursing and youth support services alongside dedicated cancer units, surveyed over 100 young people as part of report Cancer x coronavirus: the impact on young people, with many attributing feelings of loneliness and distress directly to the pandemic.

A survey for the report found:

  • 81% of respondents had been asked to shield, and of these, nearly all (88%) said they had been affected by shielding
  • During the pandemic, young people found accessing a physiotherapist (69%) and psychologist (53%) more challenging than normal
  • Of everyone in their treatment team, young people were most likely to see a Teenage Cancer Trust Youth Support Coordinator more often than they were before the pandemic
  • Seeing friends and family (53%); accessing work or education (44%) and young people’s mental (27%) and physical health (25%) were all areas that young people felt were difficult to manage during the pandemic

Dr Louise Soanes, Director of Services for Teenage Cancer Trust, said:

“Cancer at any age can be devastating, but because of the emotional and developmental changes they are already going through, young people who develop cancer are often hit the hardest psychologically. They have the trauma of a cancer diagnosis, the effects of treatment and isolation and the difficulty of seeing their friends move on with their lives when they feel like theirs has come to a complete standstill. When you combine all of this with a global pandemic, the complexity increases again.

“Access to psychological support was a struggle even before Coronavirus. But now, as young people with cancer begin to see their friends going back to school, those who continue to shield feel more isolated than ever – they need and deserve urgent support. We have fears for the toll this will take on their mental health in the long term which is why we’re asking for specialist psychological support to be urgently made more available.”

One young person told the charity:

“Treatment is a lot more difficult for me as my chemo is five days inpatient and I have to be completely alone. When I was diagnosed people tell you that you’re not alone and someone will be there every step of the way but now it feels like an incredibly isolating experience.”

Another young person spoke of people misunderstanding how vulnerable those shielding are and how ‘incredibly stressful’ it is for people shielding. They said:

“Because some people still don’t understand how vulnerable we are, how severe the situation would be if we became infected and how having to reiterate how sick we are to people close to us is incredibly stressful (they should already know) and can make us feel even more unsafe, upset and isolated.”

The charity also raises concerns over the poor communication and lack of clarity that has been offered to those shielding over the past few months, saying any future advice shouldn’t make young people choose between their safety and their income or job security.

Dr Soanes said:

“Whilst the guidance on shielding was clear as vulnerable people entered into lockdown, changes to it have been confusing and communicated poorly since. It’s essential that further updates to guidance are produced collaboratively with charities and communication with clinical teams coordinated. This will help ensure young people with cancer are supported to make safe and correct choices about returning to school or work if appropriate.”

The report also raised concerns around the financial security of specialist cancer services, leading to calls for the Government to ensure charities like Teenage Cancer Trust can continue to be there for vulnerable young people.

Dr Soanes continued:

“In response to Coronavirus, nurses and youth support coordinators funded by Teenage Cancer Trust, and who work within the NHS, have shown enthusiasm, creativity and dedication to quickly adapt the way they deliver services so young people with cancer can continue to receive their support, in and out of the hospital setting.

“However, Coronavirus has exacerbated the need for specialist support, with the pandemic costing charities like ours millions of pounds in lost income. There is a real threat that these services will be lost altogether. That’s why we want the Government to provide emergency funding to help make up this shortfall and allow us to continue to fund our crucial age-appropriate units, nurses and youth support workers.”

The charity is also recommending that teenage and young adult-specific recovery plans for each UK nation are developed to overcome the longer-term impacts of COVID-19 and shielding for young people with cancer.

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