Unmet Needs

A Parent’s Experience

Margaret Foster’s daughter, Stacey, has Rett Syndrome, a neurodevelopmental disorder.

‘Brian House, a children’s hospice in Blackpool, have supported our family since it first opened when our daughter Stacey was about 15 and we are very grateful to them for what they have done over the years, they have been amazing. However, Stacey is 28 this year and the time has come when she will soon have to move on.

This is a scary time as it is all the respite we have known and not only do they offer Stacey excellent care they are great at supporting the whole family.

Transition time was very hard when Stacey left school at 19, she lost the paediatrician who had looked after her for most of her life, she lost the care of Alder Hey children’s hospital; the social worker changed as she moved into adult services and she lost the special school that had been a huge part of all of our lives; but thankfully Brian House was the one bit of stability left in the family.

At the age of 27 Stacey’s needs are just as great as they ever were, more so in fact in a lot of ways as she is bigger now and we are that much older. Her medical problems haven’t gone away, she still needs oxygen support for seizures, she still has a gastrostomy tube and issues around postural care. If we didn’t have Brian House and we needed some medical support or advice I don’t know where we would turn as the staff have unique knowledge and understanding of caring for someone with such profound needs. We would have lost Stacey a few times when she was a child if it wasn’t for the excellent medical treatment she received from the medical profession.

I understand that we have to move on, a children’s hospice is a hospice for Children at the end of the day but we really do need good quality respite to move on to, along the same lines as a children’s hospice that provides the nursing staff who have the knowledge of caring for young adults with potentially life limiting conditions, somewhere with a bright stimulating appropriate setting. A children’s hospice isn’t the right environment now for someone Stacey’s age but the adult unit of the hospice is even less suitable.’