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.
Trustee: Claire Poke Expand I live with multiple long term conditions including severe asthma, a dynamic collapsing airway and chronic back pain. I am married to David and have adult twins William and Alice, and 3 dogs; Digger Fluff & Tonto. Alice has profound and multiple disabilities and complex health care needs and I have managed a personal budget and a personal health budget for her. I originally trained in business and finance working for the local electricity board but left when I had the twins to look after Alice 24/7. I returned to part time work with West Sussex County Council as a part time finance and admin officer and youth worker until they left school. I then came to work at Independent Lives as a Senior Personal Health Budget Adviser being able to use my own experiences to support others. From here I joined NHS England in March 2017 working in the Personalised Care Group of the Strategy and Innovation Directorate as a Lived Experience Manager. In this role I support and facilitate local people to have their voices heard at a strategic level and be part of the decision making process around service shaping and delivery. I have also spent 26 years working in volunteering as a staff officer with responsibility for vocational qualifications for adults and young people. I am an advocate of lifelong learning and have a masters level qualification in management and leadership, have undertaken short courses in Diversity and Equality, and Information, Advice and Guidance, with the most recent being Change Management in large organisations and Project Management.