Mother challenges stigma around hospice care
EACHA mother is hoping to challenge negative attitudes towards hospices, especially within the Asian community, by sharing details of her son's healthcare.
Zak, who turns two in July, has Galloway-Mowat Syndrome and he and his family have been receiving care and support from East Anglia's Children's Hospices (EACH).
Mum Farzana Kauser was "reluctant" and dad Asif Rehman "sceptical" about receiving its help, but now says "it can become a vitally important part of a family's journey".
The family have yet to visit EACH's hospice in Milton, Cambridgeshire, and are instead receiving regular visits from the care team at home in Peterborough.
Attitudes towards hospice care can be different in the Asian community, Ms Kauser explained.
"In India, where my parents are from, births and deaths are supposed to happen at home," she said.
"That attitude might make people reluctant to accept help from a children's hospice."
While hospice care can be in a hospital, "a child's end-of-life care can be provided in a family's home", she added.
Ms Kauser wondered if "given the multi-cultural city we live in, their resistance, or reluctance, might be heightened by a possible language barrier, especially if they're the first generation to migrate here from Asia".
EACH supports children with life-threatening conditions, and their families, across Cambridgeshire, north Essex, Norfolk and Suffolk.
The Princess of Wales has been the hospice's royal patron since 2012.
'Creating memories'
Zac, who is unable to sit independently and uses a special feeding tube, was just nine months old when he was diagnosed. The disorder also impacts his kidneys.
He has three older siblings - Ruwaida, 15, Talha, 11, and Huzaifa, eight.
"One of the things that impressed me most was the support for our whole family, not just Zak," said Ms Kauser.
She suspects more people would use the service if it was "more local... especially as some people might not drive and be able to get to Milton".
Ms Kauser is also keen to raise awareness among people of all backgrounds about what hospice care can offer, "because no-one wants to talk about death".
"It's not just about death and dying - instead, it can be a happy place where people enjoy spending time, creating memories, experiencing different things and meeting new people," she said.
"Before EACH came along, I thought of hospice care in black and white, but now I see it in colour."
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