Young Lives vs Cancer shares Manifesto for Northern Ireland Assembly Elections 2022

Every year in Northern Ireland, around 130 children and young people are diagnosed with cancer, who can face round trips of up to 160 miles for the treatment they need. Young people with a cancer diagnosis and their families face enormous physical, emotional and financial challenges, and young people continue to experience inequalities both during and after their cancer journey.

We greatly welcome the release of the new Northern Ireland Cancer Strategy, which demonstrates that there is real momentum behind improving the lives of families facing cancer in Northern Ireland. It is essential that the next Assembly and Executive maintain this drive for change and are committed to ensuring the strategy receives the resources it needs to achieve its goals.

We are calling on candidates from all parties in Northern Ireland to ensure that young people facing cancer and their families are heard during this election campaign, and throughout the next session of the Northern Ireland Assembly.

Young Lives vs Cancer are calling on all Assembly candidates to support:

1) A Young Cancer Patients’ Travel Fund to support young people up to age 25 and their families travelling for cancer treatment, including for treatment outside Northern Ireland

“I received a stem cell transplant in Dublin, meaning we had multiple trips to the south of Ireland for planning and preparation alongside travel to the city for the transplant itself. Although this 250 mile round journey was necessary and ultimately a lifesaver for me, it was also costly in regards to petrol. At a time when finances are already strained because of a cancer diagnosis, the support of a travel fund for costs such as petrol would have been an added – and a much appreciated – relief on the financial burdens we had to face during this worrisome time.”

2) A commitment to ensuring the new Northern Ireland Cancer Strategy is fully resourced and receives long-term recurring budgetary support to ensure the Strategy’s recommendations are implemented and sustained

The launch of the 10-year Cancer Strategy is a real opportunity for Northern Ireland to lead the way in providing high-quality cancer care for children & young people. Decisionmakers must now keep up the momentum and ensure that the Strategy receives the funds it needs, with a multi-annual budgetary commitment, to realise all of its ambitions to improve Northern Ireland’s cancer services.

3) Dedicated equalities legislation to protect children and young people’s rights in Northern Ireland, to address the barriers experienced by young people in or returning to employment and education, both during and after cancer treatment

“What most people don’t realise is the sheer impact that cancer has on every single aspect of your life – every little thing becomes an uphill battle, and there aren’t many hands helping you up. I had to leave college when I was diagnosed. Cancer didn’t take away my further education opportunities, but the lack of support and inability to adapt to meet my needs did. We need better equality laws. Somebody needs to take responsibility and be the helping hand that young people need to ensure that their educational needs are given the priority they deserve.”

4) Support for all young cancer patients after they have left treatment, including access to evidence-based mental health support, tailored to suit their individual needs

“Cancer impacted my mental health massively and getting access to timely mental health support was more difficult than it needed to be, wait times are still way too long. For me it was 60 days – a lot of people don’t have 60 days! It’s an emergency. Just because it’s not a visible issue doesn’t mean it’s not an issue. Something has got to change. If not now, when? And if not you, then who?”

5) A guarantee of a co-produced implementation of the Cancer Strategy, supported by a Children & Young People’s Cancer Patient Experience Survey for Northern Ireland

It is essential that young people are at the heart of the Strategy’s implementation, and a young people’s implementation group would ensure that the young people with experience of cancer services are meaningfully involved, not just consulted. The Strategy’s commitment to a Cancer Patient Experience Survey for young people must be upheld to ensure young people’s views are heard in the transformation of Northern Ireland’s cancer services.

We hope that all parties and candidates will join us in taking this opportunity to transform the lives of children, young people and families facing cancer in Northern Ireland.

To get in touch with us, please contact campaigns@younglivesvscancer.org.uk