14.09.2021
Anna is 12 years old and has been coming to The Donna Louise for 6 years after having a kidney transplant at Birmingham Children’s Hospital. Her family were introduced to The Donna Louise when Anna started Pertitoneal Dialysis at home and the care team supported them by spending time with Anna days after her transplant.
She comes for respite and day care and accesses counselling. One of her favourite things to do is music therapy with Phil; she has found a love of the drums and even has a set at her Gran’s house now!
Anna has Juvenile Nephritis, hypermobility and Scoliosis. Life is full of doctors’ appointments and medicine. Coming to the hospice gives Anna a chance to get some peace and quiet; she likes to come alone and spend time doing the activities she enjoys; she says “It’s like a little holiday”
Anna’s mum and dad explain that the family had reservations when they were first referred. Anna’s grandma, who gave her granddaughter a kidney for the transplant, was not keen on the idea at all. Mum, Lisa, explains “Anna’s grandma said that she did not want her to go to The Donna Louise after her transplant, she said that she could go to stay at her house, which of course she could not, but we did not know what the hospice was, and what sort of a place it was, once Anna came here we realised that it is not what you would expect at all. It’s just like a house, a normal place surrounded by other houses, shops and a playground; it’s really tranquil and it gives us somewhere calm as life is such a whirlwind.”
When they were younger, Ella and Scott, Anna’s sister and brother were also able to access the sibling service. A few months before Scott started high school, the family found out that Anna was in Renal failure and she began Dialysis just as he started high school. Scott explained that it was a really difficult time but that he benefited from the sibling activities, “The sibling group was a chance to have a day for me, and to forget about Anna’s condition. We didn’t talk about our poorly siblings when we were out, we just enjoyed the time away and could do normal things”
Dad, Nathan, explains that whilst Anna is enjoying respite at the hospice, it allows them to spend time with their other 2 children, “It makes a massive difference, we can spend time with Ella and Scott and do normal things with them; and it is less about Anna, as her condition is very time-consuming and means that we can’t always give Ella and Scott attention.”
Lisa also explains that they value the all-round support they get and not just the health care, for example from the Social Workers who have supported them with Anna’s Educational Healthcare Plan.
The family come to The Donna Louise as often as they can and Lisa says, “It’s a calming and relaxing place, it gives us a normal life back away from doctors and medicine. It allows us to be parents, and not just carers.”