Doug is a Parent Trustee for Together for Short Lives. Doug lives in Swindon with his partner, Sandra, and their two children, Ben and Emily.
Ben, who was born in November 2000, has Spinal Muscular Atrophy (SMA) and consequently has complex health needs. SMA is a neuromuscular condition which causes weakness to the muscles and is regarded as a life-limiting condition. As carers, Doug and Sandra have access to nearly 50 professionals across Swindon, Wiltshire and Oxford and, since Ben’s diagnosis in 2001, they have undertaken the role of ‘key workers’, ensuring Ben’s care and everything that goes with his condition is managed.
Doug has been involved in influencing services and policy locally, regionally and nationally since he joined the Swindon Parent Carers Forum shortly after it was set up in 2008. Doug was involved in the Aiming High for Short Breaks initiative from an early stage and, more recently, the introduction of the Children and Families Act 2014, where he worked at developing parent participation in Swindon.
Doug considers it a privilege to be so actively involved with Together for Short Lives and to work with so many people who want the best for children and young people affected by a life-limiting condition. As a parent, Doug wants to continue to be involved with the strategic direction of work involving disabled children and young people to ensure that they receive the services they need to achieve a fulfilling life.
Doug was a keen sportsman, especially playing cricket and golf; however, the demands of caring for a disabled child have enforced him to retire from many activities. Doug does manage to find time to be involved with amateur dramatics and “treads the boards” as often as he can.