As an adult living with Down’s syndrome, Anissa lived life to the full; she won many medals for swimming, loved collecting magazines, visiting Poundland or Lidl, spending time with her boyfriend and watching soap operas. She was somebody who was always thinking of others, right up until she died, aged 46 years; as Freda, her mum, remembers: ‘Anissa always thought about others, she would buy and wrap over 200 presents for everybody she knew at Christmas, she was very much a giver.’ When Anissa received her diagnosis of stage 4 lung cancer, she said to her mum, ‘right, we’re going to have to raise some money for research, aren’t we?’ Later on, she worked hard to hold a cake stall with her family to raise funds for Princess Alice Hospice.

In 2008, Anissa began spending time at The Grange in Bookham as a day visitor, where she participated in many different activities and outings; later on, she absolutely loved living in assisted living accommodation there, where she was supported by key workers, including Cathy, who has felt the death of Anissa very deeply: ‘I still have messages I can’t delete, I can’t do that yet’.

During Learning Disability Week, Cathy and Freda would like to highlight the challenges faced by people like Anissa, their families and carers, when accessing healthcare or service funding. They are both grateful to Princess Alice Hospice, in particular to Lesley, our Clinical Nurse Specialist, who provided help and practical support with the complex funding applications, to allow Anissa to return home to The Grange after a one-month stay in hospital; remembering that difficult time, Cathy recalls: ‘that’s when your lovely Lesley came in, big style!’

Before Anissa died, community nurses from Princess Alice Hospice supported Cathy and Anissa with ideas, such as a storybook, to communicate to her family her hopes and wishes in planning her funeral. Over a period of months, Anissa talked to Cathy about her ideas, often using prompts to begin the conversation. They would spend time cutting pictures out to put into her ‘planning ahead’ book.

Anissa was verbally capable, but when she felt depressed or in pain, she would become anxious and find it incredibly difficult to articulate, which would result in her shutting down. Freda and Cathy would both like to see more widespread training to enable healthcare professionals to have a better understanding of the particular needs of people with learning disabilities.