I live in Essex, have a condition called Ehlers-Danlos Syndrome and use a power chair. Having my personal budget has been life-changing.  Despite that the system can often be very complex and doesn’t always work the way it should.  As a result I became involved with trying to improve the system at a local level.  Being an employer can be very isolating, and so when I was then asked to join the ILG and connect with other employers across the UK I thought it would be an excellent opportunity to help get our voices heard.  I have had a lot of experience campaigning, lead a local access group and have worked for various charities. 

Mostly, I feel completely out of my depth dealing with Health and Social Care issues as, prior to my partner’s health deteriorating in 2015 to the point where he required 24-hour care, this was an issue that I had not had to deal with. Once I finally overcame the various hurdles to being granted a Personal Health Budget on his behalf, we employed a team of PAs from 2017 through to his death in January 2021.

However, this was not without its difficulties and in March 2019 I submitted a complaint about the CCG to the Parliamentary Health Ombudsman. Their final report was not completed until October 2021.

For 40 years, in various roles, I have worked almost entirely in the charitable sector representing patient access to complementary medicines and therapies, which also involved lobbying both in the UK and Europe. I was a patient representative on the Parliamentary Group for Integrated Health from 1989 until 2017.

Although now retired, I continue to be involved in many aspects of this work on a voluntary basis.

When I needed support as an employer I was lucky enough to find it via my local DP support team but many are not so fortunate or simply do not have the energy to fight when they are let down by a public body.  I hope that bringing my experience to the ILG community steering group can help other individual employers who might one day find themselves in a position similar to mine.

Susan has assisted her disabled adult son administer his direct payment package since 2014 and is passionate about personalised safe care & support. She is also a member of Families Involved Northern Ireland ,FINI, which is an informal network of families and family carers across the whole of Northern Ireland seeking to be involved in the planning of services to meet the needs of our disabled family members both adults and children in addition to advocating for their rights to be treated as equal citizens.

Vici lives just North of Newcastle in a seaside village in Southeast Northumberland. She has worked with hundreds of disabled people and their families over the last 13 years. Working as part of Disability Norths Direct Payment Service. 

Recently appointed as Disability North's Chief Exec inclusion, choice and control is something that is extremely important to her not only in her paid role but also as a Mum to a disabled young man. 

"My son has Duchenne muscular dystrophy we w has direct payments since he was 11. He's now 20 and his support has developed with him. Having good person centered support to live his life makes an amazing difference. The key is being allowed that control and trust from the local authority and ensuring you have the flexibility that direct payments allow. "

Wendy is a mum to two sons with additional needs. She says, “my sons are amazing men one being a black belt in martial arts the other an avid West Ham supporter with a paid job.”

Wendy undertook the Partners in Policymaking leadership course in 2005 which she describes as life changing. She has coordinated the Essex Carers Network since 2007 which is a network of families caring for a family member with a learning disability which may include autism too. Wendy says, “Many of our families employ staff to support their family member and have experienced the good and the not so good side of doing this. As a network we want to make sure our families experiences help to inform what policy and practice looks like going forwards and we feel that ILG Community is a great vehicle to support this."

Wendy is passionate about true coproduction and wants to see a community where everyone belongs.

Sarah lives in East Sussex and has a severe form of Congenital Muscular Dystrophy called Ullrich CMD. She has been employing PAs for 23 years. As her needs have changed, Sarah’s care is now funded by NHS Continuing Healthcare (CHC). via a PHB. 

Having 24hr support in place has meant she can live independently, work and travel - essentially it provides the foundations needed to get on with living life. Sarah manages her own care and employment responsibilities. She has a number of other voluntary roles including being Trustee Co-chair of Pathfinders Neuromuscular Alliance and part of the Peer Leadership Network. Sarah enjoys crosswords, crafting and spending time with family and friends in her free-time. 

Hi, I am Jenny. My two main passions are my cats and helping people access the right support to enable them to live the life that they chose.

I am a full-time electric wheelchair user with complex health needs, however, I am a great believer in the social model of disability. The Social Model says that it is the barriers that society puts up, not our impairments, that disable us. And that adaptations and changes in society can break down the barriers.

My team of PAs - funded jointly by my local council and ICB - and my vast array of equipment, help me break down those barriers.

I work as an Independent Living Coordinator in a London DPO (disabled people’s organisation), and I am part of a local campaign group.

You will often see me in Zoom meetings with a cat on my lap, or walking in front of the camera.

Alex Cowan is an educator, writer and performer, giving talks,
presentations, workshops, and peer advice to promote a holistic understanding of disability and also specialises in disability and sexuality.

Alex is chair of Ealing's Direct Payment Users Group. She also chairs the North West London Wheelchair Users Group. She is a member of the Wheelchair Alliance User Engagement Group and also Equipment Matters Group, which looks at service provision for community equipment in England. She is a member of Ealing Older Adults, Disabilities and Long Term Conditions Partnership Board.

Alex encourages us to think beyond the prescriptive, disablist
limitations by which we live, and recognise and celebrate the difference and humanity in everyone.

Alex is a passionate advocate for good social care provision and the support for PA users. She has been a PA user for 22 years.