News

Simon Miller and Averil Jackson care for 3 children who have tremendous needs. Mark suffers from Spastic Quadriplegia along with other conditions. Dealing with him is very stressful. Much time is taken managing Mark on and off the toilet.

Simon has given up work to help Averil look after the children. Before Simon gave up work Averil had been up 3 nights on the trot with Mark and looked dreadful, this unfortunately was not a one off situation. Vickie has a similar condition, but does not need quite so much attention, although she is liquid fed. Paige has Cerebral Palsy and is blind. She has all her food pureed and drinks thickened, and can take anything up to an hour to eat a meal.

Simon Miller said: "The best thing we could be offered would be some rest. If a community hospice service was set up, the children could get to know the nurses if they were to visit on a regular basis. It takes parents a while to feel they cold trust their precious children to someone else’s care. But knowing qualified nurses could visit and offer overnight respite would give us the chance to have a break."

Kay Baker (Jessica’s Mum) said, "Just before she was 5, Jessica was diagnosed with Batten’s Disease and little did we know that this would dramatically change our lives. She received the highest quality of medical care from the hospital, the doctors and the nurses, but as a family we suffered greatly as we experienced this heart-breaking and traumatic time. Jessica died over 3 years later – that whole time was difficult for her, not only physically but emotionally too, and was extremely disruptive for the rest of the family.

"I tried to involve Jessica’s brother and sister in activities but her illness demanded so much of my time and energies that this was basically impossible. As for time for myself, I soon realised that there was no such thing!

"It would have been wonderful to have had some long term respite so that we could have relaxed a little bit as a family, knowing that a fully trained carer was looking after Jessica."

Erin, 19 said: "I was tube fed for 11 years so was not able to have any life of my own. When I was extremely poorly, the Community Nurse would come late at night and early in the morning to do my blood tests. Sadly, after a while this service was not available, so it meant I had to go to the hospital for blood tests. This was such an effort for me and for my Mum, because we always had to wait. I was too ill to travel there and back. If a Community Service was set up, it would mean that families could get more regular visits and more respite in the home."

Julia’s House Children’s Hospice Service aims to ensure the provision of comprehensive respite and palliative care for children in Dorset with life limiting/life threatening conditions and support for their families. This will be provided by a community-based, nurse-led team to be known as Julia’s Nurses.

The service will complement the activities of existing children’s community services, which operate from Poole and Dorchester hospitals. Ultimately, Julia’s Nurses will operate a 24-hour service, adopting a holistic approach to ensure that all the needs of children and their families can be met.

It is anticipated that Julia’s Nurses will be operating across Dorset by mid 2003. Further development of the service, which may embrace a number of delivery methods such as a hospice building or day care centres, will be determined by the experiences of the community team in action.

Julia’s House Children’s Hospice Service is the operational arm of the Poole based, Julia Perks Foundation Limited. It was established in 1997 with the aim of delivering an effective respite and palliative care service for children in Dorset. Over the last five years the charity has received enormous support. Funds have been raised through a multitude of activities and events and are rapidly approaching £1 million. Plans are now in place to set up further supporter groups so that the Charity has a presence all over the county.

Julia’s House has a charity shop in Poole High Street; a second shop will soon be opened in Broadstone. Other outlets will follow as suitable sites are identified.

The charity is awaiting the results of a bid for funding made to the New Opportunities Fund, a branch of the National Lottery. If successful, the bid, which was endorsed by the Dorset and Somerset Strategic Health Authority, will significantly accelerate the development of the service.