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.

Josh Hepple is an equality trainer and consultant who has severe cerebral palsy. His impairment affects his speech and mobility and he relies on personal assistants 24/7. This website is about his journalism and equality training. He loves his cockapoo, Jake. 

The prejudice that Josh has faced has given him great empathy for marginalised groups; especially disabled and LGBT people.

Josh has been a theatre reviewer and an equality trainer at the Edinburgh Festival Fringe for many years. His Equality Training sessions are based on the social model of disability.