The week of 4-8 November 2024 is set aside to celebrate the work of nearly 1 million trustees volunteering for charities across the UK. Trustees are individuals responsible for the governance of a charity. They make decisions collectively as a board and are guided by charity law and the constitution of the charity.
METUPUK was originally set up a charity in England and Wales in November 2021 (registration 1196494). In 2024 we also registered with the Scottish Charity Regulator (registration SC053472). The roots of METUPUK were formed in 2016, when Jo Taylor founded it, inspired by the work of METUP, an activist group in the United States. METUPUK quickly started to gain support from women dissatisfied that outcomes for patients with metastatic breast cancer were not improving.
METUPUK has always been a volunteer-based organisation, but fundraisers were set up to further our advocacy work. Once METUPUK had money to spend, it became important to open a bank account and register as a charity. Opening a community bank account in late 2020 during the Covid pandemic was surprisingly difficult because very few banks were taking on new customers. Finally, we managed to do this, which enabled us to register as a charity. Our original board of trustees comprised of 6 people: Jo Taylor (Founder and Chair), Connie Johncock (Treasurer), Madeleine Meynell (Secretary), Julia Bradford, Andy Figgins and Helen Steele.
As Secretary, I took the lead on writing the constitution and liaising with the Charity Commission for England and Wales. Our constitution has only two restrictions on the board of trustees – That they are aged 16 or over and at least one is living with metastatic breast cancer. As a person living with metastatic breast cancer, registering as a charity was very important to me. It was about maintaining the legacy of METUPUK and remembering the women who were influential in shaping the organisation before and since we became a registered charity. Two of our board members have died while serving as trustees – Connie Johncock and Louise Furneaux. Many other women, who were influential in METUPUK prior to and after us becoming a charity, have also died, and we stand on the shoulders of their advocacy.
My personal aims as a trustee were threefold – to register METUPUK as a charity; to stay as a trustee until our first annual report was accepted; to recruit new trustees with determination to continue the charity’s work. I am pleased to say that all three of these have been collectively achieved and so I am stepping down as a trustee having already added an additional year to my initial term.
Our current trustees are Jo Taylor (Founder, Chair and External Relations), Phil Southwell (Finance and IT), Nicky Goldthorpe (Secretary), Andy Figgins (Friends and Family coordinator and Safeguarding), Emma Smith (Fundraising), Helen Steele (Volunteer Management and Internal Operations). Some of the role descriptions have changed as we have grown, but our aims remain the same.
This incredibly strong board is very well placed to see METUPUK grow from strength to strength. Being a METUPUK trustee can be challenging. We are a small charity and have no paid staff to carry out our work. This means that many projects rely on trustees to carry them out themselves or to work alongside and be responsible for their delivery by our volunteers, without whom we could not function.
How do I see my future role within METUPUK? I intend to continue carrying out my duties as Access to Medicines Lead working with NICE and campaigning alongside Kirstin Spencer, the Scottish Medicines Consortium Lead. Together we aspire for NHS patients across the whole of the UK to have equitable access to therapeutics. I will provide my support to the METUPUK board and look forward to seeing the charity grow.
At METUPUK we are always looking for new volunteers, whether to join as a trustee or to volunteer more generally. If you would like to find out more, please email join-us@metupuk.org.uk