Elaine, 42, lives with her partner, her two sons, who are 18 and 6, and her daughter, Rosie, 3, in South Lincolnshire. Elaine is a full-time unpaid carer for Rosie, who has Myelomeningocele Spina bifida. Rosie requires personal care, intermittent catheterisation, and an overnight one, all of which Elaine is responsible for carrying out. Elaine describes that Rosie requires moving and positioning, as she's unable to walk yet, and that she has regular physiotherapy. Rosie is described with great pride, talking about how she plays and is trying to dress herself. Rosie has hit her milestones and is doing extremely well with her cognitive development. Elaine describes her daughter as 'a cheeky, clever little girl who takes it all in her stride.'
Talking about her daughter's condition, Elaine states that 'I've learnt so much, medically.' This will strike a chord with many parent carers. We often become the expert in our child's condition and enter a whole new world of medical terms and procedures we didn't even know existed. Parents of children with disabilities have our own community. We support each other when the rest of society lets us down. Elaine has a positive outlook and is definitely a glass half-full person. She chats about about the disabled community and how she loves meeting like-minded people'. It is so very true that, nationwide we do support each other, guide and advise other parents in similar situations.
Highlighting some of the challenges that Elaine faces, in trying to ensure Rosie gets the care, intervention and treatment she needs to thrive a 'lack of support' comes straight to the forefront. Rosie is now waiting to be provided with her third Occupational Therapist, a service that is vital to assist her in developing motor skills and assessing any adaptations she may need to access education. Elaine also cites a 'lack of communication' and 'waiting time for referrals' are becoming an issue in Rosie's care. These kind of problems in multi-disciplinary care of disabled children are widespread and Elaine is one of thousands experiencing the battle to get her child the level of treatment she needs.
When we asked Elaine, from her lived experience of operating as an unpaid carer to her daughter, what she felt needs to change in order to make life better for children with disabilities, like Rosie, she gave quite a list.