Trustee & Business Development
I have worked to support children and adults with learning disability, and their families for over 35 years. During all of that time I have passionately believed in the rights of the person using the support, and the knowledge and expertise of the family as those who know the individual best.I have worked at local, regional and national levels during my career. Starting as a student nurse and specialising in the support of people with complex disabilities. For the last 15 years of my career I was Chief Executive of Oxfordshire Learning Disability NHS Trust, leading the development of that organisation’s delivery of integrated health and social care. This included the development of supported living and person-centred support for individuals, and specialist health services for people with the most complex needs. I have contributed to government policy within health and social care, and was an external advisor to the Healthcare Commission in the investigations into services both in Cornwall and later Sutton and Merton.
Having retired from the NHS, I now work part-time as an independent consultant and volunteer for a small number of organisations all of whom are user led.
Trustee & Chairperson
The youngest of my three adult children, Gemma, has profound and complex learning difficulties. Over the years I have had many struggles on behalf of Gemma including a Judicial Review against the Local Education Authority, a Special Educational Needs Tribunal and various challenges involving Health and Social Care.
I was directly involved in supporting my daughter and another young lady to live independently in their own home. Using person centred planning and direct payments to employ a care organisation, we accomplished a successful supported living arrangement. I was also co-founder of a small charity which successfully sought to secure further education for young people with profound learning disabilities in West Oxfordshire.
I have worked as a consultant for Paradigm, a national organisation in the field of learning difficulties and now sit on the local Learning Disability Partnership Board and on the Joint Management Group. My passion is to share knowledge and experience in the hope of helping families get better lives for their sons and daughters.
I have three children and my oldest, Imogen has severe learning disabilities and autism. As a baby and toddler, Imogen had to have lots of tests and assessments. She started off in mainstream school but it was soon clear she needed the more specialised environment of a special school, where she thrived. Imogen is now 25, living at home and taking part in different activities during the day. Just like her siblings, she loves to be out and about doing things, especially swimming. We have found a great supported living house for her to move in to and we’re working with the support provider and Adult Social Care to make sure that she can move in gradually in a way that meets her needs.
Being the parent of a child with special needs can feel very overwhelming and I quickly realised how important it is to understand the system and how it works. I was a governor at Imogen’s special school for 8 years, and Chair of Governors for some of that time. I learnt a huge amount from that and enjoyed being able to ‘give something back’. I have found OxFSN an invaluable support as Imogen has moved in to the complicated world of adult services. The organisation has really helped me make sure that Imogen has the support to do the things she enjoys and get out and about with her friends.
In 2017 I took part in OxFSN’s Family Champions Course. I would strongly recommend it to other parents as a great source of information and way to meet other family carers. From 2019-2021, I worked on the Quality Checkers project, run with My Life My Choice, visiting people in their supported living houses to see whether they are able to live the lives they want to live. I really enjoyed meeting everyone and it was great to see how creative some support providers are. I have also been involved in OxFSN’s Working with Families training, helping professionals to understand more about the lives of people with learning disabilities and their families.
Trivia: favourite breakfast? Toast with marmalade!
Simon Jones is a retired Nurse Consultant and Queens Nurse who has worked throughout the UK supporting people with a Learning Disability and/or Autism and their families. His last post before retiring was at Oxford Health NHS Trust. Simon has a Masters degree from Tizard and was part of the group that wrote the NICE guidelines on “Challenging Behaviour and Learning Disabilities” and also “ Care and Support of people growing older with Learning Disabilities” Simon was also chair of the Royal College of Nursings Learning Disability Nursing Forum. Simon has predominantly worked with people living in their own homes but has also worked in In-Patient units, Respite Care, Day Centres and Schools.
Simon has 5 children and 6 grandchildren and he and his wife were also family carers in the past.
I have two children, and the youngest, Sebastian, has an acquired brain injury following an accident as a baby. Sebastian was always in mainstream education with good support and now, after four years at college focussing on land-based skills, he is doing a supported internship scheme through Oxfordshire Employment with a view to gaining some work in horticulture.
I became involved with OxFSN several years ago in order to learn more about how adult services work and have been inspired by the expertise and experience amongst my fellow Trustees. I am particularly interested in post-16 education and training and feel strongly that a learning disability should not limit a young person’s aspirations and choices. I am also a steering group member of the Oxfordshire Parent Carer Forum and have recently become the parent rep for the newly formed Oxfordshire SEND Employment Forum. I am a passionate believer in co-production as the best way for services and families to work together for better outcomes. Other passions include walking, reading and holidays in Scotland and in the summer, escaping the heat!
My last position was as CEO of Dyfodol, a Powys wide charity. I have been happily retired since 2014. I was responsible for the day planning, organisation and leadership of an organisation struggling to survive. My position had been vacant for an eighteen month period prior to my arrival so my priorities were to stabilise the staff team, build essential bridges with the local authority, network with other voluntary and statutory sector colleagues, set up an effective Senior Management structure and seek out appropriate funders for each of the five projects. I was line managed by a committee of Trustees, who were well meaning but often had opposing views and directional ideas to each other and the staff team, this naturally became a challenge to the smooth running of the organisation. I am therefore aware of positive and negative Trustee input.
Prior to this post I was the Contact a Family Regional Development Manager for the North East and Cumbria for 13 years where I set up the regional office up from scratch when Contact a Family was unknown. I worked on Aiming High for disabled children to ensure parents and carers were a key part of any planned developments. I devised training and models of participation that is still used effectively.
During my career I have worked in the Statutory, Voluntary, Business and Political Sectors. I have a strong commitment to quality care provision while possessing the ability to line manage, administrate, delegate and budget. I am well aware of the benefits of strategic planning and have an acute interest in national and local policy formation. I am able to set up partnerships to mutual benefit and can evolve systems based on stakeholder requirements. Consequently I am able to devise sustainable plans based on agreed aims and objectives resulting in measurable outcomes that advise good practice e.g. I devised the Durham and Cumbrian models of participation to support the development of user involvement in Aiming High for Disabled Children. The models of participation are based on principles of user and practitioner involvement at all levels, developing mutual respect between participants within practical boundaries that enables all contributors to celebrate positive outcomes and learn together from failures.
My work with Contact a Family enabled to represent families of disabled children at strategic levels and consequently share their views and frustrations while recommending positive change in a solution focussed way. Through this involvement I was able to raise the profile of the organisation and attract suitable funding.
I am used to public speaking and have regularly spoken at national and local conferences as well as live local and national TV and radio. I have chaired large conferences and complex meetings and am able to network appropriately and promote any service I believe in, which led to 13 years of consistent funding for our office and ‘one off grants’ from local funders and businesses.
On a personal note I enjoy meeting people and consider myself an able problem solver. I have always considered myself a supportive colleague, plus, I think I have good interpersonal skills and keen sense of humour!