The Value Of Hospice Care For A Child And His Parents by Teresa Allen

My family first arrived at Little Bridge House on the 27th December 2006, we had been transferred by our local hospital, we had come for terminal care as our little boy was not expected to live more than a few days.

On the journey to the hospice my husband and I were full of unanswered questions, what would it be like, would it just be another hospital, would there be lots of children with no hair, would everyone be sad.

Our thoughts and questions couldn't be further from the truth, the moment we walked through the door, we were put at ease. We first met our contacts Jess and Mary they would be looking after Harvey and us. We then met Alison the cook who gave us both a cup of tea, not in a plastic cup out of a machine, you wouldn't believe how good that tasted.
We were shocked how unlike a hospital it was, no uniforms and no funny smell.

Jess showed us round the house, while Mary gave Harvey a cuddle, up and down the corridors there were children running about with big smiles on there faces. Everywhere you went there were children and adults with smiles on there faces, this was obviously a place of joy not sadness.

We were shown Harveys bedroom it was beautiful with a lovely view onto the garden and he had a big sign saying welcome Harvey. There was a bed for us to sleep in his room, but we also had a separate room opposite his called Orchard. This room is specifically for the families who have come for terminal care. It is en-suite and has a lounge so if you wanted you could stay in the room if you wanted privacy. Next to Harvey's room was a room called Starborn. This is where your child is placed after they have died. Starborn can be decorated to any style to suit your child, next to Starborn is a beautiful Chapel.

After our tour, it was time for lunch, everyone sat round a big table, it was just like the Walton's. This is where we first met Doctor Bruce, who I mistook as the gardener, something I am still living down. At lunch we met other parents and members of staff.

At lunch it became apparent that the hospice was mainly used for respite, rather than terminal care. The other families there, were there for respite. It is not only the child who comes and stays at Little Bridge but the whole family, including siblings.

The hospice employs sibling workers who are there to look after the siblings so the whole family receives a real break and holiday. The siblings can then meet other siblings and share experiences.

After lunch we went through all of Harveys medications with Mary, it was such a relief for someone else to take responsibility for them and not to have to worry about giving them to him correctly and on time. It felt like we were just there to be his mummy and daddy again rather than being a nurse to him, which was such a relief. We could give him cuddles and play with him, rather than worrying about whether his NG tube was in the right place, or whether it was time to draw up medicines.

Although we were there for terminal care, no one treated us differently or shyed away from us; we were giving the time and space by the staff to ask the questions we wanted to in our own time; we weren't swamped with information which was a real help. We had time just to take in the situation as the past few weeks had been a whirlwind.

We began to plan Harvey's funeral; we had decided to have his ashes put into fireworks which would be in the shape of Tinky Winky, his favourite Tellytubby. Fortunately Harvey began to turn a corner and after 12 days we were discharged as he was too well to be there.

We have been back many times, over the last year and a half and the staff at Little Bridge have become like family, there are always there when we need them. Especially when he had pioneering surgery in May 2007, he only had 10% chance of survival, but he did survive and is getting stronger and stronger.

Our respite at Little Bridge means that we get a few days were we get to be a normal family, where people don't ask why he is so little, and he doesn't get stared at when he is in the jacuzzi because of his scars.

I get to talk to other mums who have had similar experiences, and I don't have to cook. My husband likes to chill out in the conservatory and read a book, or you will find him in the games room playing on the playstation.

You can spend as little or a much time with your child as you like. They like to take the children to the local tourist attractions, so in general they would rather be with their carer having fun. My husband and I get to spend quality time together without Harvey which at home we never get, as getting a babysitter for terminally ill child is practically impossible.

Harvey sleeps in his own room downstairs and we stay upstairs in the bedrooms. If there is a problem, they ring the room and we can go down. Also we can ring to make sure he is fine no matter what time it is.

Little Bridge is not at all what we expected, it is a beautiful place full of fun and laughter, with a sense of tranquillity and peace, there is always someone to talk to and Harvey gets to play with other children who don't treat him like he is a china doll. The best thing of all is that I get to be Harveys mummy rather than his nurse and carer.

Copyright 2008 Teresa Allen

Little Bridge is run by Children's Hospice South West. It costs £3 million each year to run one of their hospices. They have two in the region (south west UK); one at Barnstaple (Little Bridge House) and one at Wraxall, Bristol (Charlton Farm).

The Precious Lives Appeal is raising the £5million needed to build another hospice near St Austel, Cornwall, UK that will support the Plymouth/Cornwall/Scilly part of the region.

There are more than 1200 families in the South West with life-limited children.

For Children's hospices elsewhere in the UK.