Action for M.E. Trustee report and accounts 2014–2015 Contents A word from our Chair 4 Chief Executive’s introduction 5 The Trustees’ report 2014-2015 6 Our values 7 Our promises 2013-2016 8 Delivering our promises 9 The impact of our work 10 Structure and governance 13 Financial review 16 Independent Auditor’s report to the Trustees and members of Action for M.E. 19 Statement of financial activities 21 Balance sheet 22 Notes to the accounts 23 Legal and administrative details Action for M.E. company Trustees and Directors Chair of Board of Trustees information 2014–2015 and Directors Registered charity No 1036419 Alan Cook CBE Alan Cook CBE (Chair) Registered in Scotland SC040452 Anthony Golding (Vice-Chair) Chief Executive Incorporated on 10 March 1994 Christopher J Cundy (Treasurer) Sonya Chowdhury Company registration number Clair Thienel 2906840 Principal Medical Adviser Prof Derek Pheby† Dr Alastair Miller Registered office Dr Gregor Purdie* 42 Temple Street, Keynsham, Jane Logan Bankers Bristol BS31 1EH Jane Stacey The Royal Bank of Scotland Jane Young 79-83 Colmore Row President Lionel R A Godfrey Birmingham B3 2AP Clare Francis MBE # Martin Jarvis Auditor Founding President Ondine Upton BDO LLP Sue Finlay ‡ Philip Fearn Bridgewater House Vice President Philip Marsden Finzels Reach ◊ Martin Arber Sarah Helton Counterslip Susan O’Shea˜ Bristol BS1 6BX Patrons †resigned 18/9/14 Lord Bragg *appointed 14/11/14 Julie Christie #resigned 21/5/15 ‡resigned 21/5/15 Clare Francis MBE ◊resigned 12/2/15 Professor Anthony Pinching ˜resigned 18/9/14 Lord Puttnam CBE 2 Action for M.E. Trustee report and accounts 2014–2015 How we made a difference 523,500 2,130 visits to our Online M.E. Centre callers to Action for M.E. to access critical information accessed timely support and and support expert welfare benefit advice £3.49 44,900 raised for every £1 we spent on copies of booklets and fundraising, meaning that we factsheets sent out helping to could reach and support more empower people affected by people and invest in research M.E. to make informed decisions 5 70 pilot research projects amazing volunteers who invested in, contributing to enabled us to support more growing evidence about the people affected by M.E. biology of M.E. 3 Action for M.E. Trustee report and accounts 2014–2015 A word from our Chair The past year has seen us successfully (and £220,584 including restricted funds), “I would like to continue on our journey to be a well- which has enabled us to move towards thank our staff governed, financially secure charity with our target level of reserves. This is a clear aim of supporting people with crucially important in securing the and Trustees for M.E. in every way we can. We do this by charity’s future and means we can be all the hard work providing information and support, more certain of our ability to continue they have put in raising public awareness, lobbying key providing critical support to people over the last year. stakeholders and encouraging a steadily affected by M.E. developing research agenda. Without them, During the year, we were asked by the all that we have In pursuit of these aims, we have CFS Research Foundation to take over increased the number of times we have management of £231,400 funding for the achieved would had contact with people affected by ‘Brain in pain’ research project when the not have been M.E. to 632,000 – that’s the number of charity closed following the death of its possible.” times we have shared information, founder, Anne Faulkner. This exceptional advice, signposting and support with income was supplemented with a patients, carers and advocates in donation of £26,500, creating a small 2014–2015. surplus to help fund our other research activity. Our website, the Online M.E. Centre, remains our key channel for providing Finally, I would like to thank our staff and this. During the year we have expanded Trustees for all the hard work they have our offering and have seen the number put in over the last year. Without them, of monthly visitors rise steadily all that we have achieved would not throughout the year, peaking at 63,300 have been possible. We have also seen in March. Visitors to the centre spend an a material increase in the number of above-average length of time on the volunteers supporting us, and now have site. These figures support the regular nearly 70 people working with us from positive feedback we receive about the home and in our new Keynsham office quality of the centre and its contents. which we moved into in June 2014. We seriously could not deliver the breadth Many disabled people have been of support and services without this affected by the recent welfare changes invaluable help, so thank you to our and the roll-out of the new benefit, the volunteers for all that you do. Personal Independence Payment. Our specialist Welfare Advice and Support Service has provided some critical support to people affected by M.E., including those going through the appeals process. We are currently exploring a partnership with a Law Centre to establish whether we can add legal casework to the services we already provide. None of our support, influencing or research activities would be possible without the activity that goes on behind the scenes to raise income. For the first time in a number of years, we can report that we finished the year with a financial Alan Cook surplus of £44,644 on unrestricted funds Chair of Trustees 4 Action for M.E. Trustee report and accounts 2014–2015 Chief Executive’s introduction People with M.E. deserve better. That During the remaining months of 2015– “As we move into has been a message that we, and others, 2016, we will be developing our plans for setting out our have been pushing for many years. But 2016–2019. We are engaging with key people with the most severe form of stakeholders in a range of different ways new promises to M.E. deserve even more than that: they and using information, feedback and people affected are amongst the most disadvantaged ideas from events, such as the by M.E., we and neglected in our society. symposium, to inform our work. remain very In November, we held our AGM and This includes working with our Patient ambitious about Severe M.E. Symposium. More than 200 and Carer Reference Group, around 45 what this might people, including those joining via people affected by M.E. who input into Livestream and Google Hangout or our health and research work, including look like. We are contributing in advance, were able to our resources and events. determined to share their views and ideas about what One of our big challenges this year is to deliver against the charity could do to try and make this launch a new Online M.E. Centre as our them.“ a reality. website host is switching off the current The overriding message was that direct platform. By the time we publish this advocacy support for people with M.E. report, our new website should be and their carers needs to be increased. almost ready to launch. We have Following the symposium, we have consulted with a range of people who undertaken a review of current advocacy use our Online M.E. Centre and will be provision to explore accessibility and making the site easier and quicker to use suitability for people with M.E. and and navigate around. It will also be launched a survey to help identify need suitable for use on any device, including and current provision. All of this has smartphones. been led by one of our wonderful As we move into setting out our new volunteers, Catherine Hale. We are now promises to people affected by M.E., we exploring funding opportunities to be remain very ambitious about what this able to take this forward. might look like. We are determined to Continuing to look into 2015–2016, we deliver against them, as we have done have already seen some exciting over the past three years with our developments with my invite to the current promises, as set out in the World Health Assembly Summit at the Statement of strategic intent 2013–2016. United Nations, Geneva. Here I was able People with M.E. deserve better and we to open up the potential for M.E. to will do everything we can to make sure feature on the global health agenda and that they get the support and services we are now exploring plans for taking they need and deserve. this forward. We are also setting up an International Alliance of CEOs from leading M.E. charities to share, debate and enhance our work. We recently heard that we have been chosen as the recipient of the Whitehouse Consultancy’s annual pro bono scheme. Following a competitive application process, Whitehouse will provide Action for M.E. with free policy, public affairs and communications support over the next 12 months. I look forward to reporting on our achievements next year as we are exploring some exciting plans in order Sonya Chowdhury to get the most out of this partnership. Chief Executive 5 Action for M.E. Trustee report and accounts 2014–2015 The Trustees’ report 2014–2015 This is the Trustees’ report for the year Inform and influence “Our mission April 2014 to March 2015. It is prepared is empowering in accordance with all statutory and We increase awareness and regulatory requirements and seeks to understanding of the illness and its people with M.E.