Services we offer
At Haven House children’s hospice we provide a range of services for families who have a child with a life-limiting or life-threatening condition.
When a child is diagnosed with a condition that offers no hope, or when treatment is abandoned because it is unable to cure or alleviate the condition, families can feel isolated and alone. Children’s hospices are there to support the families throughout the child’s life, by providing respite care, day care, or specialised equipment for the family to use at home. Unlike adult hospices, only a minority of children needing our service have any form of cancer. Our children may have metabolic disorders, neurological, cardiovascular, or respiratory problems, or a combination of these. It may be a condition they were born with, or as a result of an acquired illness.
Many of our children do have a life expectancy of years following their diagnosis, and some of the conditions may be degenerative. Whether the life expectancy is short or longer, there is an enormous burden of care carried by everyone in the family - parents, brothers, sisters, grandparents, and so many more. Haven House works to support each member of the family to cope in their own way, and share their fears, anxieties and concerns in a safe environment.
By providing respite care, the families can spend time together, confident that their child with special needs is being well looked after; or maybe they can just do the everyday things other families take for granted – attending a family wedding, going shopping, or just putting their feet up in front of the TV – without having to be constantly ‘on duty’ caring for their special needs child.
At the end of the child’s life, Haven House can provide hospice care, if the family choose this. And of course, we continue to support the family for as long as they may require it afterwards.
One of the most important aspects of any child’s life is play, and this is even more so for children with a life-limiting or life-threatening condition. Play not only provides enjoyment, but is a valuable learning process too: learning about sounds, how things feel, different aromas, colours, and learning to move in a co-ordinated way. All children learn these things through play.
So Haven House provides two very special play services: our
Home Loan Service lets families borrow special toys and other equipment that their child might need or benefit from; and our
Lila project provides respite play services in the child’s home.
The brothers and sisters of a child with a life-limiting condition have their own special needs: it can be difficult for a child to be their sibling's carer, they can lose touch with their own peers, and they may find it difficult to explore their own feelings about the prospect of their brother or sister dying. In 2005, the first group of siblings met together to help to develop their own support network, naming it Haven Buddies, and supported by a dedicated specialist care worker.
Samantha
Samantha was born at 37 weeks following a traumatic delivery. This resulted in her developing lots of complications. As a consequence she spent the first year of her life in hospital with uncontrollable seizures, manifested by long periods of high pitched screaming and back arching. She was unable to feed orally and required a tube inserted into the stomach to receive her feeds. She was also unable to see or hear properly.
The Doctors informed us that her life expectancy was very poor due to the severity of her condition and associated problems. My husband, who was self employed, had to give up his job to help me care for Samantha and our other child who is 3 years old.
At this point we as a family were referred to Haven House by our Community Paediatric Nurse. Haven House was able to offer regular respite care for Samantha and we were also able as a family to stay at the hospice if we wanted. This was really important to us as we had never left Samantha before and wanted to know that she was close by.
For the first time in over a year we had a full night’s sleep knowing that Samantha was being cared for by experienced paediatric nurses. We could spend time together as a family, and were able to take our older son to the park and go out together for a meal. Our son was also referred to ‘Buddies’ the Haven House sibling support group which gave him the opportunity to share his experiences and gain support from other brothers and sisters who have similar experiences to him.
We now book regular respite weeks and weekends at Haven House and have recently felt confident enough to leave him with us to have a weekend away together.
Baby John
Great Ormond Street asked us if we could help to look after baby John. He had a genetic condition which meant that his muscles did not get instructions from his brain and so they wasted away. Children like John do not often survive beyond the age of two.
When we contacted the parents to tell them about Haven House they were so relieved. They were struggling to care for John at home – he had to be fed through a tube in his stomach and he wasn’t sleeping at night. They were feeling under pressure and they were scared about how they would cope when he came to the end of his life. They came to Haven House and were comforted by what we told them about our respite care and our end-of-life care. They were so relieved that they asked us to care for John the next weekend.
John was looked after by our experienced team – we took him into the multi-sensory room to enjoy the lights and music and we gave him some massage. This appeared to relax and comfort him and so we taught his parents some basic massage which they could do at home.
When John’s parents came to collect him they were so much more relaxed and rested and felt more able to look after him. They booked him in for regular respite care sessions and we were able to talk together about how Haven House could also care for John and for them at the end of his life. They were immensely supported by this and by the fact that we and Great Ormond Street would work together to control John’s discomfort and pain.
