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 lonely and isolating, and so when I was asked to join ILG Community as it was being set up, I thought it was about time our voices were heard!

With my condition, I have very limited time where I can function, but ILG Community means everything to me.

I previously have had experience campaigning on disability issues, led a local access group and worked for various charities. 

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.

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.

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. 

I’m based in Sussex, retired (allegedly!), and am a Personal Health Budget holder on behalf of my adult son.

I joined ILG Community in 2024 after feeling isolated and overwhelmed by the challenges of managing Personal Assistants and navigating the system on my own. I was looking for a supportive, inclusive community of people who truly understood the realities of employing PAs and managing care.

ILG Community has provided that support, and reminded me that there is real strength in numbers.

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