Pillaton WI Report -July 2013

The speaker for our July meeting was Julie Pride from the Children’s Hospice South West and what a wonderful speaker she was. The topic of how respite for children with a life threatening condition and for their families could have been quite depressing and sad. But no, Julie talked about it all so beautifully and positively and made it so interesting and I hope left the audience feeling very positive.

She explained that the SW Children’s Hospice movement was started in the mid 1980’s by Gill and Eddie because two of their three children had a life threatening illness and there was no Children’s Hospice in the south west – the nearest being Oxford. I worked with Eddie during this time and I remember sitting quietly with him as he described the effect this was having on them all as a family, as a couple and as individuals. I am sure I don’t need to say anymore.

So Eddie and Gill undertook the task of fundraising and gaining permission to build a hospice. In 1995 Little Bridge House in North Devon was opened. Charlton Farm, near Bristol and the newest Little Harbour in St Austell have followed this. Little Harbour was the outcome of the Precious Lives Appeal, which was started just as we all went into recession!

So what do they do? The dictionary definition of hospice apparently is a resting place on a journey therefore not specifically referring to the end of life. This is exactly what they offer – a resting place. Each hospice welcomes the whole family. Brothers and sisters often describe their feeling of never coming first as Mum and Dad’s attention is inevitably focussed on the sick child, however well intentioned they might be. So the hospice offers them an opportunity to enjoy themselves, to have a holiday, to be “normal” and to help them feel special. They often describe, as do the parents, their home as not necessarily being their own as carers are constantly coming in and out. Eddie said that he couldn’t sit around in his pyjamas on a Sunday morning because of this!

Siblings when back at home are also encouraged to phone the hospice at any time just to chat. Statistics tell us that approximately 50% of all brothers and sisters of a child with a life threatening illness develop some form of mental illness, do not attain at school, become bullies or are bullied. However it is also shown that the work of hospices’ can reduce this.

Parents are offered relief from their caring tasks as the hospice team will do these for them, consequently perhaps allowing parents to have a different quality of time with their child, or perhaps just to have a lie in. They are also able to leave their child in safe hands and maybe do things with their other children or just go of on their own for a bit. The poorly children too have opportunities to play and have fun.

Each child has a bespoke room and each time they come for a visit the room will be prepared for them so that it was totally identical to before – what a task organising this! There is a huge emphasis on dignity with as much as possible being done to ensure this – lots of gadgets and help are available.

Of course children die – they have life threatening conditions but everything is done to support them and their families through the process. Many parents when they know that their child is near the end of their life bring them to the hospices. The child is given their own room, which again is made personal to him or her, and care is given to all the family during this time.

Julie told us about one little boy who was worried what would happen to his favourite toys when he died. The visiting Vicar, Geoff, suggested that his favourite toys got “married “ so that they wouldn’t be alone. The little boy liked this idea so Geoff and all the staff came in dressed for a wedding (including hats!) and a full wedding ceremony was conducted for his toys. The little boy was then heard to say that he didn’t need to worry any more.

Each hospice has a special room named “Starborn” for the family to sit with the child after death. There is no hurry over this and the family can reflect, listen to music or do whatever will help them. At Little Bridge House they have a donkey. Some parents whose daughter had died a few days before Christmas and who had attended the Carol Service spoke to the owner of the donkey. The next thing to the surprise of the staff, the donkey was led into Starborn where it apparently rested its head next to the child. The parents remarked that she was having the Christmas she wanted. The rule of the hospice is that there are no rules. How wonderful.

Of course all of this is expensive to maintain. They need £8million per year to run the three hospices but they do cater for a large number of families. At Little Harbour which has only been open for about 18 months, they support over fifty families and look after up to twelve children at any one time. They are still fundraising and hope to be able to increase this support to one hundred and fifty families over time.

Sadly Eddie and Gill’s two children did die and also very sadly Gill became ill and she too died. However the work that she started with Eddie all those years ago still carries on and hopefully will continue to do so. What an amazing journey!

Pam Lowther

PS. Heather Troup, Janet Wilcocks, Lesley Allibone and Carole Hoskin are all doing the moonlight walk around Saltash in aid of the Hospice so would welcome sponsors.

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Last updated: 17 September 2013 Contact Us