Rebecca’s story about healthcare
Rebecca has profound and multiple learning disabilities (PMLD). She has complex health needs which include dysphagia, epilepsy, osteoporosis and corneal ulcers. Rebecca requires 1:1 support 24-hours a day, 7 days a week. She uses a wheelchair and she cannot weight-bear so hoists are required.
When Rebecca feels well she really enjoys life. She loves going out in her car (WAV-upfront passenger) and has many interests including ten pin bowling, classical music, gardening and spending time with her family.
Rebecca’s many health issues do have a major impact on her everyday life. Her epilepsy in particular can make it hard to enjoy a ‘normal’ life as she can have 2 or 3 major seizures a day and it is largely uncontrolled by her anti-epileptic drugs.
Her health needs can sometimes feel overwhelming. Her health action plan (HAP) is vital in identifying what kind of support she needs, so that she can get this support and enjoy life. The plan was developed by her parents. They realised the need for a HAP when they were writing her person centred plan and were looking at all her health needs.
Rebecca has a written summary version of the HAP which she carries with her. It gives basic information about her health needs, medication, methods of communication and dietary requirements. She can use this if she has to stay in hospital to help hospital staff care for her properly.
Producing her HAP has helped Rebecca’s parents identify and prioritise her health needs. The actual ‘Action’ pages set out her health needs, required actions and who was responsible for carrying the actions. It also set out a timescale.
‘Rebecca’s plan had an immediate impact – it was given to her GP, district nurses, support provider and her neurologist and within a few weeks appointments had been made for a bone density test, dental check, eye check, physiotherapy, occupational therapy and speech and language input.’
Rebecca has had a HAP since 2005. It has helped make Rebecca’s health needs more manageable. But having a Plan is only the start. Rebecca and her family continue to face challenges around getting the healthcare she needs. For example, Rebecca still does not have regular health checks.
Rebecca’s family hope that the support Rebecca gets for her health needs will continue to improve in light of recommendations made in Valuing People Now.
