Representative body

The Representative Body represents Learning Disability England members and acts on their behalf, making important decisions about Learning Disability England says and does.

The Representative Body is an even split of 4 self-advocate Reps, 4 families and friends Reps, and 4 organisational Reps.

The members of the Representative Body make sure that Learning Disability England stays true to its values and is always working towards its goals.

Any member can put themselves forward to be on the Representative Body, and all members can vote.

The Representative Body is made up of these 12 elected representatives:

Kumudu Perera Self Advocate Rep

Kumudu Perera

Kumudu is a disability advocate for My Life My Choice and also works as a health ambassador.

He is also a phone buddy and represents people with disabilities.

Kumudu believes Learning Disability England is important because people with lived experience and knowledge about it are included as equals.

He wants to see a society where people with all kinds of disabilities work together with families and paid supporters to improve things ‘because if you’re trying to do things on your own nothing will change’.

Phil Hughes Self Advocate Rep

Phil Hughes

Phil says he has gone through most of his life with people judging him by the way he looks and how his body works. And had people talk to him like a child.

After too many years spent in a day centre, he got involved with Sunderland People First. Phil has helped get a changing place in the Royal Hospital. He looks into why disabled people die a lot younger, with the Stop People Dying Too Young group.

And he has made a video about dysphagia and the right to take his own risks. This is now used in hospital training for new SALT assessors.

Phil strongly believes in everyone having a voice. And has found people ‘who have a disability like me’ are often left out and are not given the opportunity to have a voice or support to voice their opinions and rights.

It’s because of this he decided to stand for the Rep Body ‘so that people with similar needs to me get listened to more’. 

Jack Marshall
Self Advocate Rep

Jack Marshall 

Jack has Moebius Syndrome which impacts his life with a number of physical and learning disabilities.

From an early age Jack has spoken up for himself & others with regards to disability. He has raised tens of thousands of pounds for charity and challenges himself to seemingly impossible tasks.

Having attended special schools and been written off as non academic due to his learning disabilities, Jack fought for the right to go to mainstream college. He worked his way from a Foundation programme with some great support, and now Jack is at Stafford University studying Law.

Jack was awarded a British Empire Medal (BEM) in the New Year’s Honours List 2019 for his campaigning and fundraising.

Mary Woodhall 
Self Advocate Rep

Mary Woodall 

Mary is a self advocate from south London. Mary is a campaigner with the group Campaign 4 Change, and also works part time as a receptionist for Premier Inn.

Mary is interested in politics and enjoys campaigning on different topics that matter to people with learning disabilities, such as the recent Campaign 4 Change lockdown campaign. Mary says teamwork is very important to her. She stood for election because she is passionate about making a difference, speaking up at a local and national level and listening to other people’s views.

Mary also enjoys knitting, arts and crafts and spending time with family.

Liz Wilson 
Family and Friends Rep

 Liz Wilson

Liz lives in West Yorkshire. She has a daughter with learning disabilities who recently moved into her own Supported Living flat. She also had a brother who lived nearby until his death in 2022. Liz has managed direct payments for her daughter and brother.

Liz believes all people with learning disabilities are all different. She says she encourages her daughter to speak up for herself. But her brother didn’t use words to communicate so she says he and many like him need family to speak up for him and interpret his unique communication to those who don’t know him so well.  Liz would like to find more and better ways for people who have lots of support needs to get involved and be heard. 

Liz has had people with learning disabilities in her family for her whole life and has seen many policy changes.  She says ’the thing that has never changed is the love and commitment of families who work so hard to make sure our loved ones have a good life’. 

Liz has also spent most of her adult life working alongside people with learning disabilities and autism and their families. She recently retired and says ’I can confidently say I don’t just bring my own views to this role, I have many voices behind me’.

Kate Chate Family and Friends Rep

Kate Chate

Kate is a registered Makaton Tutor and a Family Consultant for Dimensions UK (a support provider).  Kate sits on the Suffolk Learning Disability Partnership Board (Suffolk is where she lives)  and she was a Parent Carer Representative for Suffolk’s parent carer forum  for about 10 years. Kate is also a trustee for Ace Anglia.

Kate  says she stood for election to the Rep Body because she has been inspired by so many amazing family carers to help make change for people with learning disabilities and their families. Including for her son. 

Kate believes passionately in ensuring everyone’s right to a good ordinary life.  She says she will ‘find Learning Disability England’s way of listening to families, and then bring as many new voices to that as possible. To make as much positive change as we can’.

Paula Strike
Family and Friends Rep

Paula Strike

Paula has worked with children and adults with disabilities for 20years, as a teaching assistant and SENDco support. Now working across Essex with family carers, making sure they have the information and resources they need to advocate for their family member with a learning disability, Paula is able to share her knowledge and experience with others. This job also includes working with local authorities, health and social care to coproduce with families wherever possible; and challenge services who do not. Lived experience is the most valuable resource services can access, and Paula makes it her mission to remind them. She is particularly concerned with making sure everybody’s voices are heard by being creative with communication and sharing information

James O’Rourke
Family and Friends Rep

James O’Rourke 

James is older brother to Tony who was diagnosed at the age of 5 years with learning disabilities (although they didn’t call it that back then in the 1960’s!).

As you would imagine James’ life has been influenced by his brother’s learning disability.

Since leaving school James has had a wide-ranging career from residential/community social work to sales and marketing; politician to advisory roles for NHSE.

James’ passion is to ensure those with learning disabilities like his brother who have difficulties communicating are heard.

Nathaniel Lawford
Paid Supporter Rep

Nathaniel Lawford

Nathaniel says he is a fan of people, stories and learning. Throughout his education including a masters in Globalization and fascination with philosophy, to his work from easy read trainer to inclusion director, to his volunteering as an academic speaker and activist researcher- he explains “I have in all things loved learning from, being with and living with the wonder that is humanity. For all lives matter and all wisdom should be cherished.” 

Angela Catley Paid Supporter Rep

Angela Catley

Angela trained as a nurse for people with a learning disability in the 1980s, aged 18, doing most of her training in a big hospital where more than 500 people with a learning disability lived. Angela said ‘It was awful. It taught me what happens when we stop seeing people as equal citizens. This lesson has stayed with me my whole life’.

Since then, Angela has worked for lots of different organisations. Most of them were charities or social enterprises. A lot of her work has been with or for people with a learning disability and autistic people. Angela used to work for Community Catalysts, helping people think about the way people are supported. She still does that now working with others independantly

Angela believes people should be able to live life their way, following their dreams and getting their voice heard. She also has an understanding of all sorts of organisations and services and the challenges they face when they try to make this happen.

Angela says ‘I have good connections with lots of local authorities and with many smaller organisations too. I hope this might bring something extra to my role’.

Marianne Selby- Boothroyd Paid Supporter Rep

Marianne Selby-Boothroyd

Marianne is the Development Director at Certitude, which supports more than 1800 ‘awesome’ people across London. Marianne says that at Certitude she listens to the views and ideas of people they support, their families as well as colleagues, and works with them to influence how Certitude works and improves as an organisation.

Marianne says Certitude belongs to different networks and has good relationships with other support providers across the country. Marianne is also a Partners in Policymaking graduate and links in with lots of people nationally who have great experience and lots of knowledge and skills to share. She will use these networks and relationships to connect with members to identify shared issues, progress ideas and action as well as feedback what is happening.

Away from work, Marianne is mum to 3 boys who have additional support needs, and is the trustee for a parent led charity called Sparkles which provides speech and language therapy to children who have Down Syndrome.

Marianne says ‘through the networks of both Certitude and my own personal experience, I will seek to connect with and expand Learning Disability England membership’.

Tim Keilty
Paid Supporter Rep

Tim Keilty 

Tim has worked with people with a learning disability for 30 years, as a support worker in a village community, as a supporter to a People First group, an advocate, as a Person Centred Planning Co-ordinator and now as a Special Projects Manager. As the years go by the job titles get more cumbersome but the focus of work remains the same!

Tim has also worked on building sites, as a pub manager and as a cleaner – jobs which are as valuable to his experience as jobs in social care.

Tim works for New Prospects Association in North Tyneside, because he wanted to find out whether it was harder to actually make things happen than tell people how to do it. It is.

Tim is a qualified social worker, but puts more store in the fact that he was once described by Jack Pearpoint (admittedly in an off the cuff comment) as ‘a remarkably gifted leader’.

Tim writes a blog http://talesfromserviceland.blogspot.co.uk, has written a book with a colleague, is a Fellow of the Centre for Welfare Reform and always likes to share ideas and work together.

Board of trustees

The Learning Disability England board is made up of trustees/directors. The Board makes sure Learning Disability England does a good job and is chosen by the Representative Body.

The Board Members are:

Parmi Dheensa

Parmi Dheensa, is an award-winning social innovator and humanitarian, disability human rights activist and neurodiverse , sharing lived disability experiences with her youngest son, a disabled and adventurous changemaker.

Parmi is the founder and Executive Director of ‘Include Me TOO’ charity, working with disabled children, young people and their families from racialised and marginalised communities. She has overseen and developed a range of services, resources, training at local, national and international levels covering areas of intersectionality, participatory approaches, inclusive practice, policies, and safeguarding, for disabled children, young people and their families promoting a disability human rights-based ethos.

Parmi’s work has been dedicated to addressing discrimination through the lens of intersectionality and many years as a anti-racism consultant and advocate. Her work focuses on enabling others, increasing their access to spaces to share their experiences to challenge systematic and structural barriers and hierarchy to reduce inequalities and end discriminative practices.

Kristiina Cooper

Kristiina is a journalist at the BBC, a volunteer for the advocacy charity, VoiceAbility and mother to George, 16, who has Down’s Syndrome. She’s committed to ensuring people with learning disabilities lead fulfilling lives and believes the best way to overcome challenges is to join forces with like-minded people.

She works at BBC Westminster where she’s been reporting on politics for over 30 years. She’s an experienced editor, writer and broadcaster with a specialist knowledge of Parliament, public policy and the law-making process. She’s gained a great deal from her voluntary work at VoiceAbility where she’s supporting adults with learning disabilities to become self-advocates.

When Kristiina isn’t spending time with family she’s catching up on her reading, walking in the Hampshire countryside or trying to learn Finnish.

Jordan Smith

Jordan has many lived experiences and is a self-advocate who lives in Colchester in Essex. He is a former self advocate representative body member and former co-chair of the representative body of learning disability England.

He currently is a quality consultant at Dimensions UK and chair of Dimensions council.

Jordan is passionate about people with learning disabilities having good lives working alongside their families, friends and their supporters. He also wants to see people who don’t use words and use other ways to communicate and have complex needs to have the right to a good life too. In Jordans spare time he coaches and plays football with other people who have a learning disability or are autistic. He loves cake

Jan Walmsley

Jan is a self employed academic. Her particular interests are inclusive research, self advocacy, and the history of learning disabilities. In 1994 she co-founded the Social History of Learning Disability Research Group at the Open University which pioneered inclusive approaches to recording and sharing the history of learning disability – the Group celebrates its 25th Anniversary in 2019. Jan also coordinated the LDE Academics.

Jodie Williams (Co Chair of Trustees)


Jodie lives in Sunderland which is in the North East of the country.
Jodie says: 
People say that I am hardworking and very reliable, I do great job of supporting other people, brilliant at using different ways of communicating with people, am kind and generous and have a great sense of humour.

I am a Director of a company called Sunderland People First which is a self-advocacy company. The work I do there is to support others to have a voice, to make sure that people with a learning disability have good lives. I have lots of experience of working with organisations that deliver services and support people with learning disabilities, for example other community/ self-advocacy companies and groups, NHS England, Local councils, and local CCGs and Health trusts.
I am really involved in Transforming Care work locally, regionally and nationally and have been an expert by experience advisor at Care and Treatment reviews since the Transforming Care Programme began in the North East back in 2014.

Other work I do, extra to my work at Sunderland People First, am an expert advisor on the NHS Learning Disability and Autism advisory group and a Director for Inclusion North.

I am delighted to be a trustee with Learning disability England as I want to make sure that lives of people with a learning disability are improved and people are heard and that the government listens.

Lisa Hopkins

Lisa is Chief Executive at SeeAbility. SeeAbility is a charity which supports people with learning disabilities, autism, and sight loss. Lisa began her career in Canada as a Support Worker and subsequently became a Behaviour Consultant working alongside people whose behaviour was described as challenging. Prior to taking up her role at SeeAbility, Lisa was Managing Director at Dimensions UK, where she worked for 9 years.

Liz Tilly

Liz is strongly committed to the full inclusion of people with learning disabilities in all aspects of life, and has had regular professional and social contact with people with learning disabilities for over 40 years.  
Liz is the founder and director of Building Bridges Training, a social enterprise of people with a learning disability which provides training and does research focused on making a difference to people with a learning disability. Liz also works part time as a senior lecturer in social care at the University of Wolverhampton. She also set up and is a trustee and volunteer with the charity Jigsaw Events which provides people with social and leisure opportunities.

Previously she founded and for twenty years was Chief Executive of a voluntary organisation in the West Midlands which provided a wide range of services and opportunities for people with learning disabilities. Prior to this, her career was in special education.

Paula Braynion

Paula has been MD with Future Directions since it was founded. Previously worked as Director of Operations, Deputy Chief Executive and Director of Nursing in the NHS. Paula is passionate about ensuring Future Directions is a values led organisation and these values are lived out at every level of the organisation. Paula believes that living out the values will make a real positive difference to peoples lives. Worked as a Nurse Therapist and Nurse Consultant in medium and low secure care for a number of years. Moved to Pennine Care as Deputy Director of Nursing and was appointed as Service Director, Specialist Services in rehabilitation and high support, CAMHS and drug and alcohol services in 2007.

Sarah Maguire (Co Chair of Trustees)

Sarah is also Chief Executive at Choice Support. Choice Support supports nearly 2,500 people with learning disabilities and other social care support needs. Sarah has worked with people with learning disabilities for almost 30 years. Her work began supporting people to move out of long stay institutions in the 1980’s. Sarah has been a training manager, an Operations Director and the Director of Quality and Safeguarding for Choice Support. Sarah is part of the steering committee for the Driving up Quality Alliance and a founder Board member of the Association of Quality Checkers.

Staff

We are a small staff team because we want to work alongside our members and bring people together, rather than trying to do everything ourselves.

Meet our team:

Gary Bourlet

Gary has been a self-advocate for over 30 years and is a Co-Founder of Learning Disability England. Before this, he founded People First England.

Gary has a vast amount of experience in working with the media and has appeared on Channel 4 and in the Guardian. He is a civil rights campaigner and brought the People First movement to England.

Gary is a Membership and Engagement lead with extra focus as self advocate spokesperson.

Amanda Fawcett

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Amanda is one of the Membership and Engagement Leads at Learning Disability England (part time). Amanda also works as an Independent Producer in the Arts & Culture Sector where she’s been managing projects and productions for over a decade. She centres care and accessibility in her practice and is passionate about Disabled artists and their stories. She’s currently Company Producer at Firebird Theatre: a Bristol-based, intergenerational theatre company of Learning Disabled adults who have been making plays together for over 30 years. 

Amanda cares deeply about honouring and platforming the insights, experience and knowledge of Learning Disabled people and can’t wait to learn more from LDE’s diverse membership! Amanda is a year-round iced coffee drinker and has recently started getting into audio books. 

Anna Balding

Anna is Personal Assistant to Gary Bourlet and Project Support Coordinator. Anna has a Bachelors degree in Sociology. She lives in Kent and previously worked as a carer for elderly people with dementia. Anna is also a proud mother to two young children.

She is passionate about supporting people with learning disabilities to be able to live good lives.

Lesley Day

Lesley is the Admin Assistant. She is the first point of contact for information and queries.

Lesley has two grown up children. She is a qualified teacher and as well as working for Learning Disability England, she works as a musician and piano teacher.

Jess Hawker-Meadley

Jess is the Operations Manager.

Jess joins us having worked within advice services since 2007 having worked in both local Citizens Advice services and national services as well as Leeds University Union advice centre.
She is passionate about working for people living better lives.

She lives in Bristol with her husband and two daughters

David Mahon

Dave is the Valuing People Alliance Co-ordinator for the Health and Wellbeing Alliance.

Dave has a background in project and programme management covering areas including learning disabilities, complex needs, and speech, language and communication.

Dave believes that we should all have access to the opportunities in life that can help us to be our best selves.

When the day’s work is done Dave likes to do his ‘daft’ illustrations.

Rachael Hall

Rachael is one of the Membership and Engagement leads at Learning Disability England, and has a joint role with JMS Trust as a Carers engagement worker with them.

Rachael has a master’s degree in Disability Studies from the University of Leeds. She has previously worked as a Personal Assistant and with disabled children within afterschool and holiday club settings.

Rachael is a family carer and is passionate about disabled people being included, accessing their rights and living independently.

Sam Clark

Sam is the Chief Executive. She supports the members Representative Body and Trustees to lead Learning Disability England

Sam believes everyone has a contribution to make and is always looking for opportunities to collaborate and learn from other people. On her best days she goes swimming

‘Life during Covid – a different perspective’: Guest vlog by Simone Aspis

There has been a lot of research about the difficulties people have faced through the Covid pandemic.

Most of us have experienced loneliness and anxiety over the past year.

But there has been much less research and information about what life has been like for people with learning disabilities living in ATU’s and other institutions.

Simone Aspis, Director at Changing Perspectivestalks about the main struggles faced by people who have been cut off from their family and friends for so long.

This includes isolation, digital exclusion and difficulties getting the right care and support.

To watch the vlog, either click the link below or click on the picture.

Watch Simone’s vlog here