CANDIDATE PACK. Trustee

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CANDIDATE PACK Trustee Candidate Pack 2014

Background Information Introduction The Motor Neurone Disease (MND) Association is the only national charity in England, Wales and Northern Ireland that funds and promotes global research into the disease and provides support for people affected by MND. The Association was formed in 1979 by a group of volunteers who wanted to co-ordinate support, guidance and advice for people affected by the illness. We now have approximately 3,000 volunteers in England, Wales and Northern Ireland and 160 paid staff, all dedicated to improving the lives of people affected by MND, now and in the future. Our vision: Our vision is a World free from MND. Our mission: We improve care and support for people with MND and their families and carers We fund and promote research that leads to new understanding and treatments, and brings us closer to a cure for MND. We campaign and raise awareness so the needs of people with MND and everyone who cares for them are recognised and addressed by wider society. Our values: People with MND, their families and carers are at the heart of everything we do. We collaborate, and value everyone s contribution. We achieve excellence through personal commitment and ongoing improvement. We respect and respond to people s diverse needs, backgrounds and views. We achieve our aims through building open and transparent relationships. Making a difference Care and support The rapidly progressive nature of MND demands the fast provision of care and support services. We do all we can to ensure the complex needs of those living with MND are met quickly to enable them to achieve the highest quality of life possible.

We influence to ensure statutory services meet their obligations to provide the support those living with MND need and are entitled to, no matter where they live. Where these services fail to deliver we strive to fill the gap. Our accurate, professional, accessible information and practical day-to-day support offer a lifeline to enable people with MND to live with their diagnosis and achieve the best quality of life possible. We provide funding to a national partnership programme of MND Care Centres and networks across England, Wales and Northern Ireland. In addition, our 89 volunteer-led branches and groups offer financial support in their local areas and an opportunity for those living with MND and their carers to meet with others for mutual support. MND is little understood in the clinical and medical communities. We offer high quality education and training opportunities for current and future health and social care professionals to enable them to provide the best possible care for those with the disease. Research The Association is a leader in the funding and promotion of some of the world s most groundbreaking and pioneering research into MND. The pace of discovery is accelerating, with a number of findings, in the last few years helping the science community understand more about MND than ever before. Partnership is a core principle of our research strategy. Every 1 committed by the Association to collaborative research initiatives generates 2 to 3 in partnership funds from other organisations. We fund biomedical research projects including research into the causes of MND, creation and characterisation of disease models, the search for a diagnostic test and identification of therapeutic targets. We also fund clinical and healthcare research projects to improve the quality of life for people living with MND today. We have a strong international profile, in large part due to being the organiser of the highlyregarded International Symposium on ALS/MND, the world s largest annual conference for MND researchers and clinicians which attracts over 900 delegates from over 30 countries. We also communicate the outcomes of research activity across the world to specialist and lay audiences through printed, electronic and social media. Campaigning and Raising Awareness In 2014 Campaigning and Raising Awareness was added to Care and Research as the third mission of the Association. This reflects the desire to effect change to ensure that people with MND, their families and carers get the best possible treatment and care. We campaign both at a national and local level ensuring that people living with MND are at the heart of every thing we do. Our current national campaigning includes securing the NICE Guideline on Motor Neurone Disease and using the 16,000 signatories of the MND Charter to support our General Election campaign in 2014/15.

At a local level we are working with our colleagues in Care to effect change to local services for example access to hospice care for people with MND in Southampton and ensuring the continued funding of a specialist nursing post in Hertfordshire. We are currently planning a new local campaigning structure to take effect in 2015. We are building effective partnerships with other bodies to ensure that the knowledge and skills of health professionals are developed such as our joint work with the Royal College of General Practitioners to speed up referrals to neurologists. We are looking to build on the recent success of our awareness campaigns to increase the numbers of people aware of MND and in particular those in a position to impact on care and treatment. Additional links: MND Association Website Annual Report and Financial Statements Becoming a Trustee Strategic Framework and Impact Report Board of Trustees Reports

Governance The Board of Trustees is a group of volunteers which takes overall responsibility and acts collectively to govern the Association. They are responsible for ensuring the mission and long-term aims of the MND Association are met. Trustees have a legal responsibility to ensure the Association is complying with current legislation and governance best practice. Our Board of Trustees comprises the Chair, 10 elected and five co-opted trustees. They bring a wealth of skills and experience to the Board. Full biographies can be viewed on our website, www.mndassociation.org. Organisation Structure

Finance Following two successive years of substantial reported deficits, we planned for a surplus in 2012/13 to rebuild the reserves we need for future investment, and provide a prudent buffer against unexpected financial difficulty. This is especially important in uncertain economic times. Our efforts to close the gap between income and spend resulted in an overall surplus of 365,000. Income Our income in 2012/13 was 13.3 million, an increase of more than half a million pounds on 2011/12. This is a fantastic achievement during times of economic difficulty, and a credit to the efforts of our volunteer and staff fundraisers. Highlights for this year included: 2,256 supporters organised fundraising events that raised over 1.3 million, showing continued strong annual growth in this crucial area. 126 new Tribute Funds were set up, bringing the total number to 1,144. Between them they raised 827,000. Following two very successful years, the Midland Co-operative extended their charity of the year partnership with us for a further four months, raising an extra 65,000. Our Christmas Appeal and national raffle both registered record-breaking totals, raising 160,000 and 130,000 respectively. Our dedicated runners in the London Marathon and the Great North Run raised over 375,000.

TRUSTEE ROLE DESCRIPTION PURPOSE OF THE ROLE: The Board of Trustees is responsible for the overall governance, performance and strategic direction of the Association, in terms of financial health, probity of its activities, the development of its overall aims and objectives. It ensures compliance with its memorandum and articles of association, with charity and company law, and with any other legal and regulatory requirements relevant to the MND Association s activities. The MND Association are seeking experienced persons, preferably at director level, from a wide variety of professional backgrounds. Whilst applicants from all professions will be considered for the role, MNDA would be especially interested in anyone with a strong background in governance and/or with an advanced understanding of charity law. This is a fantastic opportunity to join a high performing board at the forefront of an organisation tackling the wide and complex range of issues posed by motor neuron disease. The successful incumbent will find the scope and range of the organsiation s activities both challenging and highly rewarding. In addition to this, MND Association boasts an extremely strong support base of staff and volunteers, dedicated to the mitigation and, ultimately, to the eradication of this devastating condition. KEY ACCOUNTABILITIES: 1. Governance Ensure that the organisation functions within the legal and financial requirements of a charitable organisation and strives to achieve best practice. Contribute actively to the Board of Trustees role in giving firm strategic direction to the MND Association. Ensure the Association seeks and considers the view of beneficiaries and stakeholders when setting strategic direction and policy, etc. Reflect the organisation's vision, values and principles, strategy and major policies in all their activities and at all times. Contribute specific skills, knowledge, interests and contacts and support the Association in fundraising, campaigning and influencing activities. Raise awareness and influence on behalf of people affected by MND and the Association. 2. Ensuring policies and practices are in keeping with aims Follow the Code of conduct and Association Values at all times, particularly when exercising the functions of the trustees, or any of its committees, sub-committees, groups. Ensure that Trustee policies and practices are in keeping with the Aims of the Association and strive to meet best practice guidelines at all time.

Ensure that the assets, and resources of the charity (including its money, investments and reputation) are safeguarded and protected; and that the charity is and will remain solvent. Management and mitigation of risk. 3. Ensuring best practice Be an active member of the trustee body in exercising its responsibilities and functions. Optimise the relationship between the Trustees body the Association s senior management and its staff/volunteers. Avoid situations where any personal or family interests or loyalties may conflict with those of the charity, and comply with the Code of Conduct for Trustees and the Conflict of Interest Policy. Act with integrity; and at all times in the best interests of the charity as a whole, and of the charity s present and future beneficiaries. Actively participate in trustee training and development sessions as appropriate. To further the organisation, keeping within its charitable objectives. 4. Other duties In addition to the statutory duties, trustees are required to use any specific skills, knowledge or experience they may have to contribute to effective decision making. This may involve: Active participation in committee, sub committees, panels and advisory groups Providing guidance on new initiatives. Taking part in staff and volunteer panels including staff recruitment, disciplinary, grievance and appeal panels. Scrutinising and feeding back on Association reports.

PERSON SPECIFICATION ROLE TITLE: TRUSTEE ATTRIBUTES ESSENTIAL CRITERIA COMMITMENT Ability to understand and accept the duties and liabilities of being a charity Trustee. Empathy with the vision, mission values and aims of the MND Association. A willingness and ability to devote the necessary time and effort. FOCUS Ability to think and apply knowledge strategically. Ability to think creatively. Ability to keep mission-focused. Ability to analyse and evaluate management information and other evidence. Willingness to listen and learn and continue to develop. COMMUNICATION & TEAMWORKING ACCOUNTABILITY Ability to communicate clearly and sensitively and to take an active part in discussions. Ability to influence and engage with a wide variety of people. Ability to work effectively in a group. Willing to express their own opinion in a reasoned way, while also listening to the views of others. Ability to challenge constructively and ask questions appropriately. Ability to exercise sound and independent judgement. Willingness to make and stand by collective decisions, including those which may be unpopular. Ability to manage difficult and/or challenging situations. Ability to maintain confidentiality or confidential and/or sensitive information.

How to apply Element Date i. Closing date for applications 9 June 2014 ii. Interviews To be confirmed Recruitment Process Should you decide to make a formal application and are successfully shortlisted you will hear from us if you are being called forward for an interview. Those candidates not selected will be advised by letter. How to Apply Having read the candidate information pack, please consider how your skills and past experience meet those required for the role. Please submit: A CV Completed application form Reach Skills TrusteeWorks operates on behalf of the MND Association and therefore interested applicants (those based within the United Kingdom only) are requested to email their most upto-date CV and completed application form to trusteeworks@reachskills.org.uk. If you have any questions about the role, please don t hesitate to get in touch Luke Strachan, TrusteeWorks Manager, on # 020 7840 5668. The closing date for applications is 9 June, 2014.