The vast majority of hospice care takes place in the community – at homes and day centres – rather than in the hospice.

Ilford Recorder: Carly with family Louie, Clare,Tyler and mum Debbie. Picture: Saint Francis HospiceCarly with family Louie, Clare,Tyler and mum Debbie. Picture: Saint Francis Hospice (Image: Archant)

Monday marks the start of Hospice Care Week and Saint Francis, Havering-atte-Bower, is sharing the story of Carly Davies to show some of the services it can offer which are often overlooked by the public.

Described by friends as humorous and sociable, 36-year-old Carly’s life wouldn’t be the same without hospice care.

Although she has never been able to speak, she enjoyed a relatively independent life until her early 20s, when a gradual deterioration resulted in her being diagnosed with a rare, incurable condition known as neurodegeneration with brain iron accumulation (NBIA).

Doctors didn’t expect her to live for more than four years. Within just a few months she lost the use of her legs, her body began to twist and she became completely reliant on her family and carers.

After her prognosis was reduced to two years, she was referred to the specialist community and crisis support team at Saint Francis Hospice.

Carly’s mother, Debbie, of Brentwood, praised clinical nurse specialist Katy Chelchowska and the medical consultant for administering medication and finding ways to manage pain that had previously rendered Carly unable to sleep for weeks at a time.

“She is as pain-free as she can be and her sleep has really settled down,” said Debbie.

Carly has benefited from physiotherapy, reflexology, and specialist equipment as well as monitoring five days a week at Heathlands Day Centre in Dagenham.

Her parents have benefited from carerss support and 24-hour communication access to Katy.

Anita McCarthy, of Saint Francis Hospice, asserts the importance of Carly’s story in helping people understand that 85 per cent of hospice care “takes place within the community – at homes and day centres.”

Although she has outlived her prognosis, Carly’s parents say that the hardest thing for the family is the uncertainty about what will happen in the final stages of her life. However, they find comfort in knowing that the hospice will be there for them every step of the way.