When times are tough, we all need a hand to hold. Especially young people facing cancer. Sometimes you just need a parent, a friend or partner by your side.
Teenage Cancer Trust and CLIC Sargent are calling for a commitment from the Government that, where possible, young people will be allowed a companion at key moments during cancer diagnosis and treatment.
When I had my stem cell transplant I was really lonely as I couldn’t have anyone in the hospital with me due to the pandemic.
- Mikaela, 18
Having a hand to hold will help reduce young people’s confusion, fear and isolation at an already difficult time.
Extra precautions to protect the most vulnerable are of course needed during the coronavirus pandemic, but these are inconsistent across the UK. In some places, having that important ‘hand to hold’ is allowed, whereas in others, it is not.
No young person should face cancer alone.
I just wanted to see her and hug her before her (stem cell) transplant, but I couldn’t. I fell apart there, somehow managed to get home, then fell apart again at home.
- Mikaela's mum
Read our open letter to Cancer Minister, Jo Churchill
Read our open letter to Health Ministers in Scotland, Wales and Northern Ireland
I’ve been having treatment alone for quite a while. Without Covid my mum would be allowed into hospital. Having family there is really important and I won’t have that at all.
- Kathryn, 22
Pledge your support for our campaign today
Our open letter to Health Ministers in Scotland, Wales and Northern Ireland
FAO:
Vaughan Gething - Minister for Health and Social Services, Wales
Mairi Gougeon – Minister for Public Health and Sport, Scotland
Robin Swann – Health Minister, Northern Ireland
Dear Ministers of Health,
On behalf of everyone at Teenage Cancer Trust and CLIC Sargent, we would like to thank you for your ongoing efforts during the coronavirus pandemic.
We are writing to you now to bring to your attention an important issue for young people with cancer that has arisen as a result of the pandemic, and ask for your help in overcoming it across all UK nations.
Every year in the UK, around 4,000 children and young people are diagnosed with cancer – equating to approximately 12 children and young people every single day. Teenage Cancer Trust and CLIC Sargent both work to help them throughout their treatment and beyond, and to ensure their specific needs are not forgotten.
Both organisations have worked tirelessly throughout the pandemic to support children and young people through their cancer. However, over the course of 2020 it became clear that due to the coronavirus pandemic, many young people aged 16-25 with cancer are facing appointments or treatment alone. Teenage Cancer Trust and CLIC Sargent are hearing consistently from young people with cancer, who whilst feeling at their worst are feeling more isolated than ever. Since the pandemic began, many have reported hearing the news that they have cancer, details of their diagnosis or treatment plan, or having the treatment itself without being able to have anybody there with them.
Following diagnosis, there might be several appointments to discuss the best approach and treatment plans, and these appointments or the treatment itself can involve lots of new information. For some young people, having to hear, remember and process this information without having someone else with them acting as a second pair of ears may be overwhelming, and can lead to crucial details being missed or forgotten. Therefore, where possible, young people should not have to face a diagnosis, appointments or treatment alone.
We of course, understand the enormous pressure that the pandemic has had on the NHS and the imperative to reduce the risks of the virus being transmitted within hospital settings. Logistically, we appreciate the impact this will have had on Trusts across the UK. 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. We are asking you to work with relevant organisations, alongside Trusts to help find ways to overcome this barrier to accompaniment where it is occurring – as we have seen for pregnancy and in some care home settings. We are keen to work with you to find constructive solutions that can help address this problem, whilst continuing to maintain maximum patient safety and infection control.
Following a meeting in January of the Chairs of the UK Parliament All Party Parliamentary Groups for Cancer, on Tuesday 9 February, Teenage Cancer Trust and CLIC Sargent were invited to outline the issue of young people with cancer facing their treatment alone to UK Government Parliamentary Under-Secretary of State for Prevention, Public Health and Primary Care, Jo Churchill MP. At this meeting, the Minister offered to co-ordinate a four nations Ministers meeting to discuss this issue. We would be delighted if you would be able to attend this meeting, and to be able to discuss this issue in more depth with you.
We will also be publishing this as an open letter on our websites, alongside out #Hand2Hold campaign which will be launching on Wednesday 10 February.
Yours sincerely,
Kate Collins
Chief Executive
Teenage Cancer Trust
Rachel Kirby-Rider
Chief Executive
CLIC Sargent
Our open letter to Cancer Minister, Jo Churchill
Dear Minister,
It was a pleasure to meet with you on Tuesday 9 February to discuss the important issue for young people with cancer facing their treatment alone.
Every year in the UK, around 4,000 children and young people are diagnosed with cancer – equating to approximately 12 children and young people every single day. Teenage Cancer Trust and CLIC Sargent both work to help them throughout their treatment and beyond, and to ensure their specific needs are not forgotten.
Both organisations have worked tirelessly throughout the pandemic to support children and young people through their cancer. However, as we discussed, over the course of 2020 it became clear that due to the coronavirus pandemic, many young people aged 16-25 with cancer are facing appointments or treatment alone. Teenage Cancer Trust and CLIC Sargent are hearing consistently from young people with cancer, who whilst feeling at their worst are feeling more isolated than ever. Since the pandemic began, many have reported hearing the news that they have cancer, details of their diagnosis or treatment plan, or having the treatment itself without being able to have anybody there with them.
Following diagnosis, there might be several appointments to discuss the best approach and treatment plans, and these appointments or the treatment itself can involve lots of new information. For some young people, having to hear, remember and process this information without having someone else with them acting as a second pair of ears may be overwhelming, and can lead to crucial details being missed or forgotten. Therefore, where possible, young people should not have to face a diagnosis, appointments or treatment alone.
As we discussed together, both charities of course, understand the enormous pressure that the pandemic has had on the NHS and the imperative to reduce the risks of the virus being transmitted within hospital settings. Logistically, we appreciate the impact this will have had on Trusts across the UK. 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, and look forward to working with you as suggested, to produce best practice guidance from Teenage Cancer Trust and CLIC Sargent to promote this.
Alongside yourself, we are asking the Ministers 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. We are asking you to work with relevant organisations, alongside Trusts to help find ways to overcome this barrier to accompaniment where it is occurring – as we have seen for pregnancy and in some care home settings. We are keen to work with you to find constructive solutions that can help address this problem, whilst continuing to maintain maximum patient safety and infection control.
We really appreciated you meeting with us, and your kind offer to co-ordinate a four nations call on this matter with your Ministerial counterparts, to ensure we can help address this issue for young people with cancer across all corners of the country. We greatly look forward to working with you on this.
We will also be publishing this as an open letter on our websites, alongside out #Hand2Hold campaign which will be launching on Wednesday 10 February.
Yours sincerely,
Kate Collins
Chief Executive
Teenage Cancer Trust
Rachel Kirby-Rider
Chief Executive
CLIC Sargent