Trustee: Valerie Kiln-Barfoot Expand I am a young disabled woman living locally. I am a direct payments user and use the services of Independent Lives. Professionally, I have trained as a nurse and now work as a nurse researcher in both West Sussex and Surrey. I am also a trustee of a national charity related to my condition and have experience as a family support officer for Great Ormond Street Hospital. This has given me knowledge and understanding of both social and health care processes. As a trustee I work to bring a balanced insight of the professional and personal aspects of being a modern, independent disabled person.
Trustee: Chandos Green Expand I am a disability and young person's campaigner following a 19 year long battle with a brain tumour. Since a young age I have been heavily involved in representation the voice of young people in local communities where disability discrimination is an issue. Having worked alongside the Department of Work of Pensions as a user led ambassador, for a short period between 2012-2015, I then began studying at university and graduated in 2017 with a degree in social work. I am now the director of a small community interest company that supports young people into employment through social action campaigns. While also acting as a consultant for small charities, I offer help with fundraising strategies and support with developing new youth work services. Despite my physical and mental health disabilities I am keen to work with Independent Lives to support the voice of those in the community to get equal access to high quality support that values them as individuals.
Trustee: Simon Wilson Expand Though I have Cerebral Palsy with no speech, I run my own disability consultancy called SimonsAble, providing a range of services. My particular interests are working towards achieving equality for people with disabilities, so that people both with and without disabilities have the same opportunities. I undertake my role at Independent Lives with a critical mind and draw on my life experience to provide Independent Lives with a fresh perspective.
Chair: Sue Lines Expand I took early retirement after having worked in London in the disability sector and for local government for over 21 years. From this I gained knowledge and experience of issues affecting disabled people as well as equalities work from the perspective of a local authority access officer. As a disabled person myself I am strongly committed to equality for all. And that the voices of disabled people are heard and acknowledged by policy makers. I am also passionate about the rights of disabled people including the right to live independently with choice and control. I believe that the work of Independent Lives contributes significantly to achieving these aims and that as a trustee I can also support these objectives. Read in interview with Sue Lines talking about Personal Independence Payment (PIP) assessments.
Trustee: Mandy Paine MBE Expand I have spent many years campaigning for better user involvement in palliative care with Dying Matters and the National Council for Palliative Care (NCPC) and I have been a trustee of Independent Lives since 2011. I am a member of NCPC’s People in Partnership Steering Group and the Chronic Respiratory Diseases Group, and I have worked intensively with them on the development of the Difficult Conversations booklet on Chronic Obstructive Pulmonary Disease (COPD). I am also a Dying Matters champion and have spoken widely at NCPC and Dying Matters events. I have also worked extensively with the Department of Health to produce guidance for professionals and have actively sought to raise the media profile of these campaigns. I was delighted to have recently been awarded the MBE in the Queen’s Birthday Honours in recognition of my work with these organisations.
Trustee: David Hardman Expand I have worked in sport sector for several years both in coaching & strategic management. Currently, I work at Tennis Foundation as disability tennis development manager where my main objective is to engage more disabled people to play, volunteer and coach tennis across Great Britain. I bring my skills of event management, strategic planning and relationship building to Independent Lives. As you would expect I am passionate about sport and have a degree in Sport & Exercise Science. I am a keen badminton player, gym goer and make time to travel the world.
Treasurer: Irvine Caplan Expand I am a professional economist and treasurer by training, with wide ranging experience in finance and a long career working for governmental, public and private sector organisations . My direct experience of working with disabled people was with Remploy, where, as Company Economist I looked at supporting the provision of meaningful work, cost effectively. I also work on a voluntary basis, for two other local charities. As a Trustee Treasurer for AMEND (Association for Multiple Endocrine Neoplasia Disorders) and also as Chair of the National Cruse Bereavement Care (East Sussex Area). My aim as a trustee at Independent Lives is to use my professional experience to enhance the services and support provided by charity in order to support disabled people to live independently
Vice Chair: Malcolm Dennett Expand I am an accountant with a long career working in both the public and private sectors. Since moving to Worthing from Hertfordshire in 2005 I have been involved in tackling the financial challenges faced by the NHS, both in London and locally. I bring previous trustee experience having been the Honorary Treasurer of a local Mencap Society in Hertfordshire for over 30 years and a trustee for UK Skills and Chair of its Audit Committee. Now I have time to spare I wish to make a contribution to my local community. As a family carer for a grown up daughter who is facing the challenges of living independently in the community, I feel I am able to bring understanding and empathy as well as professional experience to my role as a trustee.
Trustee: Jo Tuck Expand I am a working single mum with lived experience of disability and a keen interest in health and social care. I am passionate about choice, independence and equality for all. I was born with a hip and pelvis deformity which meant that my childhood and adolescence was dominated by clinicians and social workers trying to get me fixed enough to ‘fit’ into the world. As a young adult I became interested in and connected with the disabled people’s movement and as I learnt and came to understand the social model of disability I felt empowered to live independently as a disabled person and to challenge service providers and decision makers who limited my independence or choice. I have worked in health and social care services in the community & voluntary sector for about 25 years. As a volunteer, as a service co-ordinator and as a team manager. My current employment is with Healthwatch West Sussex, the user and public champion for health and care services in the county. I also volunteer with Girlguiding UK and enjoy being involved with community events and projects.