Why Respite Care is so important Anyone who has looked after a poorly child knows how exhausting it can be. But we can’t begin to imagine what it is like to look after a child with a life-threatening condition 24 hours a day, seven days a week. Our Director of Care Karen Wright explains what respite care is and why it is so vital to children and families who rely on Hope House and Tŷ Gobaith. What is respite care? Planned respite care is when a family brings their child to one of our hospices to be looked after by our nurses and carers. The dates are booked in advance and a careplan is made for every child so that we know their medical needs, usual routines and all their likes and dislikes. Each family is an expert when it comes to caring for their child and they guide us in how to look after them. Why is respite care needed? The impact of caring for a terminally ill child or young person affects the whole family and it is massive. Many parents and families are determined to cope on their own, but this can prove exhausting. Imagine, for instance, never sleeping a whole night through for months at a time. Respite care allows families to rest and recharge their batteries, to enjoy doing the fun things with their child rather than being governed by medication and feeding regimes. They can also spend time talking to our specialist staff about any fears and concerns they may have. How do families access respite care at Hope House and Tŷ Gobaith? We are currently providing respite care to 180 children and families. Each family has a minimum amount of 12 nights each year that they can book in advance. Families can also call us for extra emergency help, for instance if parents themselves are taken ill and are unable to care for their child. What is the impact of respite care for parents and carers? Parents tell us that a huge pressure is lifted by having skilled care professionals who they know and trust to take responsibility for caring for their child’s complex medical needs. They are able to relax because they are confident that the nurses caring for their child have the expertise to cope with medical emergencies. Knowing that their child is being safely cared for means they can allow themselves to sleep through the night and really recharge their batteries. Are some parents and carers unsure about using respite care initially? Yes indeed, many parents feel anxious about leaving their child for the first time. However we work closely with the family to ensure we are fully informed of all the child’s needs and there is no pressure at all to leave them. This will happen when the parents feel able and confident to leave them, there is no set time scale for this. Some families never want to leave their child which is also OK and they will spend the respite time together as a family enjoying the facilities we have to offer. Does respite help brothers and sisters too? Absolutely. Some brothers and sisters really enjoy the opportunity to spend time with their mum and dad. All children love a bit of one on one time but unfortunately this is really hard to achieve when you have a brother or sister who has really complex needs. The majority of brothers and sisters view respite as a positive thing and they feel relief from the anxiety of watching their brother or sister struggle with their needs. However some find it really hard and feel guilty that their brother or sister isn’t at home with them, or can’t share certain experiences with them. What do families tell you that respite care means to them? Here are some comments from families: “Coming to Tŷ Gobaith was the best thing that ever happened to us. We were really nervous and scared but from the minute we walked through the door the nurses welcomed us all with love and expertise. They had the skills to cope with Evie’s complex condition and were brilliant at looking after the rest of us too. Suddenly things seemed more bearable.” Linda, Evie’s mum. “We were treated like a king and queen and little princes at Hope House. That continued throughout our whole time here for respite care.” Alison, Ryan’s mum. “Having Tŷ Gobaith means we can go on holiday with our daughter to places that would be impossible for Thomas to stay at because of accessibility. This means we get to spend quality time with her and give her experiences she’d miss out on otherwise.” Lucy, Thomas’s mum.