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Fundraising & Marketing Trustee Myeloma UK

With a long-term ambition to make myeloma history, we are looking for new Trustee with skills in Fundraising and MarComms to strengthen and complement the skills we already have on the Board. This post will advise and support the work we do in transforming patients’ lives.

  • Location: Board meetings are typically held twice per year in London and twice per year in Edinburgh. Currently all Board meetings are held virtually.
  • Salary: Unremunerated with reasonable expenses

Role summary

Myeloma UK’s Board of Trustees are responsible for the overall governance, financial health and strategic direction of the charity, developing its organisational aims, objectives and goals in accordance with the governing document, legal and regulatory guidelines.

As a member of the Board of Trustees, there is a shared responsibility for the strategic direction of the organisation, supporting the charitable objectives of Myeloma UK and ensuring sound governance.

In addition to the statutory duties, each Trustee uses their specific skills, knowledge and experience they have to help the Board of Trustees reach sound decisions. On this basis the Trustee will be invited to sponsor relevant board papers and/or sit on relevant Board subcommittees.

Main duties of the Trustees

  • To determine the overall direction and development of the charity through good governance, sound financial management and a clear strategy
  • To ensure that the charity and its representatives function within the legal and regulatory framework of the sector and in line with the organisation’s governing document, continually striving for best practice in governance
  • To uphold the fiduciary duty invested in the position in a way that adds to public confidence and trust in the charity

Main responsibilities of a Trustee

  • To contribute actively to the Board of Trustee’s role in giving firm strategic direction to the charity, setting overall policy, defining goals, setting targets, and evaluating performance against agreed key performance indicators
  • To ensure that the charity complies with its governing document (Memorandum of Association and Articles), charity law, company law and any other relevant legislation or regulations
  • To ensure that the charity pursues its objectives as defined in its governing document and applies its resources exclusively in pursuance of its objectives
  • To safeguard the reputation and values of the charity
  • To ensure effective and efficient leadership of the charity
  • To ensure the financial stability of the charity, protect and manage the assets of the charity, and ensure the proper investment of the charity’s funds
  • To lead discussions and provide guidance on new initiatives, particularly in areas where the Trustee has specific skills, knowledge and expertise
  • To ensure the Board of Trustees is structured and organised in such a way as to achieve effectiveness and efficiency as a governing body
  • To participate in activities to promote the charity to beneficiaries and the wider public such as the annual Patrons’ Briefing, patient InfoDays and other fundraising events

If you would like to know more about this role please contact Simon Callaghan

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Welcome from Simon Linnett, Chairman, Board of Trustees

Thank you for your interest in becoming a trustee of Myeloma UK. It is my very great pleasure to introduce you the work of Myeloma UK and the community it serves.

Myeloma UK invests in driving better patient outcomes through a comprehensive early diagnosis programme, cutting-edge research, sector-leading treatment access, award-winning information and support programmes, and pioneering healthcare services improvement.

Our community consists of the 24,000 people living with the incurable blood cancer myeloma, as well as those with related conditions including MGUS (a non-cancerous condition that can increase the chance of developing myeloma), smouldering myeloma (an early form of myeloma) and AL amyloidosis (a rare build-up of protein occasionally associated with myeloma). Including our patients with related conditions, the population we represent is over 63,000 people.

This means our work has to begin at identification of myeloma and encompass the whole of a patient’s myeloma journey, including the complicated and difficult decisions they and their loved ones will have to make on the way.

Our long-term ambition is to make myeloma history, but we recognise that is a challenging process. As we work to that ambition, we are committed to providing every patient with an empowered present and a hopeful future.

As trustees, we are privileged to direct an organisation of highly committed staff, led by CEO Laura Kerby and an executive leadership team of five. The new appointments we are seeking to make will strengthen and complement the skills we already have on the Board to advise and support the work they do in transforming patients’ lives.

We are committed to ensuring that patients receive more effective treatments, enjoy better outcomes, and have more years with a life they love. Your expertise could help us to deliver that.

Simon Linnett
Chairman, Board of Trustees

About Myeloma UK

Our long-term ambition

Make myeloma history

Our purpose

To give every patient an empowered present and a hopeful future.


COVID-19

As a cancer charity, COVID-19 has had a significant impact on our community. Myeloma patients are ten times more likely than a member of the general public to catch a virus such as COVID-19 and, because of the way their cancer develops and is treated, are categorised as extremely clinically vulnerable. The pandemic continues to impact how over 40% of our patients can receive treatment and the type of treatment they can have, and every patient has had to accept changes to the way they connect with their clinical teams and the way they live their lives.

We have reviewed our strategy in the light of these significant additional pressures on our community and re-set our strategic priorities. This will enable to address the serious emerging concerns of:

  • Delayed diagnosis of new myeloma patients, and the impact of that delay on their clinical outcomes
  • A shortfall in cancer research funding
  • Geographical inequalities in provision of treatment and care
  • Pressure on the NHS and on health policy design and delivery

Our strategy and work

Diagnose myeloma earlier

We will reduce the impact of myeloma and related conditions on people’s lives

Better patient outcomes are heavily dependent on identifying myeloma before symptoms develop and we work to raise awareness of myeloma with healthcare professionals and the general public.

We lead a unique early diagnosis working group that brings together clinical experts to address the challenges in identifying this complex cancer. We will evolve this to invest in vital research to examine how myeloma develops through each stage.

Discover and share knowledge

We will pursue lasting and transformative scientific discovery in myeloma and related conditions

Our uniquely focused research programme works with partners including the Institute for Cancer Research and the Structural Genomics Centre at Oxford University to drive understanding into the causes and treatment of myeloma. We are committed to the principles of open science.

We will accelerate the development of the most promising new treatments by investing in early stage clinical trial design through our Clinical Access and Research Programme (CARP) run in partnership with the University of Leeds and the UK Myeloma Research Alliance. We will set at least two new trials per year through CARP to provide patients with early access to novel therapies, up to ten years ahead of the NHS.

Transform the patient experience

We will identify unmet need, improve outcomes, and ensure equal access to patient-centred treatment and care for patients with myeloma and related conditions

We campaign for patient access to the latest treatments via the NHS through our sector-leading patient advocacy programme and provide award-winning information and support services to the myeloma community.

We will represent patients in every relevant drug assessment and work to have patient preference integrated into the drug evaluation process. We will evolve our information and support services to provide mental health and wellbeing tools and extend the support hours we offer.

Influence positive change in care

We will build the optimum model of care for myeloma patients and patients with related conditions through leadership and collaboration

We invest in the lifetime of the patient journey by operating a best practice accreditation programme for hospitals and providing educational and training materials to the wide range of healthcare professionals who treat myeloma patients and those with related conditions. Our health services research programme quantifies patient experience and need to change how patient care is designed, delivered and funded.

We will create a universal experience of myeloma care through our Clinical Services Excellence Programme and integrate patient preference into healthcare service design. We will influence the policy making process to ensure the needs of myeloma patients are understood and met.


Funding our work

Myeloma UK is a fundraising organisation with income generated from voluntary fundraising, grants and trusts, philanthropy and some trading activities. We rely on the generosity of our donors to enable us to run our life-changing programmes.

We have ambition to grow our fundraising substantially over the next three years to deliver the change myeloma patients need. Our strategic priorities are:

  • Recover our pre-pandemic income by 2023, and pursue an ambitious and sustainable growth five year strategy to increase income
  • Diversify our income streams, developing our high-level donor and trust and foundation activities
  • Embed fundraising across the whole organisation


Building our brand

Myeloma UK is a trusted brand with patients, supporters, research partners and healthcare professionals. Our current audience is a limited one and committed to us, but often supports more than one blood cancer charity, hospital or hospice.

We need to grow greater recognition of our brand and the work the charity does with both the general public and decision makers and explore innovative and cost-effective ways in which we can grow brand reputation and reach without losing the sense of trust our community has given us.


Measuring our success

We need to be able to demonstrate and understand the difference we make in order to continue to innovate our programmes and attract continued funding.

We measure our success via:

  • Patient experience
  • Retention of supporters
  • Reach of materials and marketing campaigns
  • Delivery of projects
  • Growth in income

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    Thank you for your interest in this role.

    Please download the Recruitment Pack and complete the Equality Monitoring Form

    For more information on the role, please contact Simon Callaghan at Peridot Partners, our recruitment consultants: simon@peridotpartners.co.uk | 07702 678 658.

    Please submit a CV and supporting statement (maximum two sides of A4) that clearly outlines your suitability for the role against the criteria provided in the role profile. Please include your interest and motivation in applying for this position.

    Please ensure that your application is emailed to response@peridotpartners.co.uk inserting “Trustee – Myeloma UK” into the subject field.

    Timetable

    Closing date: Open recruitment process

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