Young cancer survivor urges her MP Boris Johnson to ‘not let children and young people be forgotten during this pandemic’

A young cancer survivor from West Drayton has called out to her local MP, Prime Minister Boris Johnson, to provide urgent financial support to the charity who supported her throughout her treatment.

Helen Haar, 24, was supported by CLIC Sargent, the UK’s leading charity for children and young people with cancer, after being diagnosed with non-Hodgkin Lymphoma at 20. But the vital support she received is now under threat for other young people facing cancer as the coronavirus crisis has had a devastating impact on the charity.

Since the start of the pandemic, CLIC Sargent, which relies 100 per cent on voluntary donations, has seen a 60 per cent fall in income. The charity has had to put almost all its fundraising events on hold, leaving it facing an £8million drop in the income which pays for support such as social workers to support cancer patients; homes near hospitals where families can stay for free and grants to help pay for essentials such as food or travelling for treatment.

It comes at a time when young cancer patients and their families are more anxious than ever and need vital support from the charity.

Despite its desperate pleas for government support and Chancellor Rishi Sunak’s announcement of a £750 million package for charities two months ago, CLIC Sargent, which provides emotional, financial and practical help to children and young people with cancer, has still not received any financial help from this support package. The charity is now asking the public to email their local MP and join their call to the government for funding. Supporters are also being encouraged to tweet their MP, to help highlight the need for support further.

Helen was quick to show her support and tweet Boris Johnson, in a bid to get his attention as her local MP and support the charity’s need. She has now created a video, addressing the Prime Minister directly and asking for him to show his support to ensure other children and young people with cancer continue to get the vital support they need throughout treatment, like she did.

In her video to the Prime Minister, Helen said: “I’m calling out to you, Boris Johnson, as my MP and Prime Minister. Going through cancer treatment as a young person is extremely isolating and lonely. CLIC Sargent were there for me every step of the way. Without them I would have been lost.

“CLIC Sargent have been severely impacted by coronavirus and now I’m calling on you to help them continue to support children and young people with cancer. They are asking the UK government to provide them with £750,000 which will continue to help provide vital care and support to around 1,200 families for up to six months.

“CLIC Sargent support is a lifeline for families, just like mine. Please don’t let children and young people be forgotten during this pandemic.”

In September 2015, just after starting her second year at university at 20 years old, Helen started to feel unwell. This carried on for months but doctors did not think it was anything to worry about. Six months later, in March 2016, she went home to visit her family and woke up one morning with swollen face and neck. They went straight to A&E but, after blood tests and an X-ray, were again told everything was fine.

Helen started to get frustrated that she was not getting any answers. Then, the next day, she got a phone call to say they had reviewed the X-ray and found something. She later had a CT scan, which confirmed that she had non-Hodgkin’s lymphoma, a type of cancer which affects the lymphatic system.

Helen said: “I had been back and forth back and forth. Because they had kept saying I was fine, I started to doubt myself, feeling that people thought I was making things up. In a weird way when they said something is wrong there was part of me that thought ‘thank you, I told you there was’.”

Helen was then transferred to University College London Hospital (UCLH) where she went on to have chemotherapy treatment. Helen remembers the day she was transferred to the hospital, her CLIC Sargent social worker Pam was there, waiting for her.

“I was first in contact with CLIC Sargent the same day of my diagnosis. It was 2pm in the afternoon I was diagnosed and I got a taxi to University College Hospital and I had my own room and my CLIC Sargent social worker was already waiting in the room for me.

“At the time I was in a situation where I was living away from home, I was renting a house at university. I had to stop working, I had no finances and my Mum had to give up her job to look after me so we had no income.

“My social worker was really good – I didn’t know the benefits system at all, I’d never come in to contact with that before so she was really good at doing that for me, without her I wouldn’t have known what to do.”

At 20, Helen was too old to be admitted to the Teenage Cancer Trust unit so she was on the general adult ward. She remembers being one of the youngest by far, and feeling quite alone in her situation.

Her CLIC Sargent social worker introduced her to other young people with cancer, so she was able to speak to people who were going through similar experiences to her.

“You can’t compare someone who’s having treatment at 20 to having treatment at 50 or someone having treatment at three years old. It was nice to find other young people my age or around my age so I could think ‘it’s not strange what I’m feeling, it’s normal’”

Helen went on to have six months of chemotherapy before going into remission just before Christmas in December 2016. After having to stop university the first time around, Helen is now due to start a degree in social work this September, inspired by the support she received while going through cancer.

“I don’t know how I would have coped without CLIC Sargent. My experience would have probably not been a good one. I wouldn’t have known any of the avenues available to get help.”

That is why Helen is sharing her story, and calling on her local MP and Prime Minister to support CLIC Sargent – to make sure other young people with cancer continue to get the vital support she did throughout treatment.

“I don’t know what my journey would have been like without CLIC Sargent, I probably would have been extremely confused and stuck because I wouldn’t have known where to go.”

Helen Gravestock, Associate Director of Policy, Influencing and Voice at CLIC Sargent, said: “’Helen’s experience only highlights how important the support CLIC Sargent is to young people and their families. We are becoming increasingly concerned that as we move into the recovery period of the coronavirus pandemic children and young people with cancer are being forgotten and left out of the conversation.

Their voices need to be heard.

We call on the Prime Minister to listen to Helen’s calls and urge him, or representatives from the Department of Health and Social Care, to discuss this with us.”

For more information on how you can contact your MP to support CLIC Sargent during the coronavirus crisis, click here

Download Helen’s video to Boris Johnson here: https://we.tl/t-srnDhTwDZ9

ENDS

Notes to editors
For more information, an interview or images, please contact Emma Gibbons on 07932 666163, or email emma.gibbons@younglivesvscancer.org.uk.

About cancer in children and young people
Today, 12 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.

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.