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Community Respite

Supporting families in their own homes

Home care:

For a parent with a very poorly child, going anywhere can be an ordeal. They may have more than one child to contend with plus heavy medical equipment. Some of our children are so poorly they cannot travel without an extra person in the car to keep them safe. So if one parent is at work, any sort of journey becomes impossible. For these families, a visit by a Julia’s House nurse is a lifeline.

Parents can become worn-down and isolated, locked into a cycle of full-time care.  Being able to go out for a few hours or even just go upstairs for a sleep can be the difference between a family coping or hitting crisis-point. Children with severe complex medical needs may need two nurses or a nurse and a carer. Having this level of skilled support allows the parents of even the most fragile children to feel confident about taking a break.

Community care:

Our nurses and carers don't just work in our hospice or in family homes, they organise trips and attend events in the community too. They take the care wherever it is needed.

This enables families to enjoy some of the simple pleasures which other families take for granted - like going to the beach.

"I want to take the stress away for a family - even if it is only for a couple of hours. A whole family enjoyed a rare day at the beach, a chance to go for a swim together, because I was there to look after their poorly child."
Kate, Julia's House community nurse

One mum was delighted when her son's nurse organised for him to go to Scouts despite the fact he suffers from drop seizures and can literally drop like a stone at any time.

“We would never have thought of Connor joining Scouts. It was Nurse Celia’s idea. She made all the arrangements, talked to the Scout leader and talked to the children about Connor.

“Connor has never had any real friends before – he rarely gets the chance to mix with ordinary children. He loved it and has made some lovely friends. To see all the other Scouts gathering round him – and Connor being able to take part in all the activities has been wonderful.

“Julia’s House has taken on that huge responsibility and given him the chance to be like everyone else. He would never have had that opportunity without them.”
Sue, mum to Connor, 12

Neonatal care:

When a baby is born with a serious medical complication or condition it can be a terrifying time for parents. Catching families early is critical. By supporting parents right from the beginning  and providing good crisis support we can show mums and dads that they are not alone, that Julia’s House is there for them. We work closely with hospitals and health professionals to make sure they are aware of the services we offer. This is crucial part of making sure families are getting the right help, right from the start.

Transitions Support:

When a family has been supported by Julia’s House for many years it can be hard to let go. When young people reach 18 it is time to make the transition into adult care. We liaise and work alongside adult services making this process as smooth and efficient as possible so that everyone feels comfortable and confident. We also encourage youngsters to become ambassadors for Julia’s House or get involved in volunteering. This helps them move on when the time is right but still feel connected to Julia’s House in a positive way.



 

Sophia's Story

We very much felt we were having to cope on our own with a severely disabled child with a life-threatening condition. Beyond the medical help there did not seem to be much support. The stress was really starting to take its toll on our family

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“Julia’s House has taken on that huge responsibility and given him the chance to be like everyone else. He would never have had that opportunity without them.”
Sue, mum to Connor, 12

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