Hospice launches more services to care for more children

Rainbows is launching a new range of services to be able to care for more children and young people from the East Midlands than ever before. 

Going forward, our charity – which provides vital care and support for children with life-limiting conditions and their families – will be focusing more on Palliative and End of Life Care, as well as looking after more children and young people who are acutely unwell. 

A greater focus will be placed on those with life-threatening illnesses – which includes cancer, cardiac conditions, respiratory problems and neonates. Our new services will also see us reaching further out into the community and having a bigger presence in local hospitals, with a mission to help even more families than ever before.

To do this, we are looking to recruit a range of specialised nurses to join our team. We need Band 5 Nurses; a Clinical Lead – Long Term Ventilation; a Hospital Palliative Care Nurse Specialist – Neonatal (UHL) and Clinical Skills Facilitator. 

Since the Covid-19 crisis began, we have been looking after children and young people from children’s hospitals to help relieve strains on the NHS and nursing them until it’s safe for them to go home.

Mason Bryant-Earp was one of those children. He came to Rainbows after spending eight months at Sheffield Children’s Hospital, with his mum, Nicole. They left our hospice last week after an eight month stay.

The four-year-old was born with Skeletal Dysplasia, a rare genetic disorder that affects bones and joints. He also has a spinal cord injury. He has had spinal surgery and a tracheostomy fitted. 

“We never expected this to happen. It was life changing and he needs so much extra care,” said Nicole (24). “When he was born, he was behind in his development and not the same speed we would have expected for him to be sitting up, crawling etc.

“The spinal cord injury is really rare. It took doctors eight months to find it and he was diagnosed at the age of two. There is a good chance he will never regain movement, despite having spinal surgery. 

“Mason couldn’t even hold his head up. I was heartbroken. You never think this kind of thing will happen to your children. I feel like it just tore my whole world apart. Mason was my only child. The only person in my life that I put before me. And it was such a lot for such a little boy to be going through.”

Mason, who is ventilated 24 hours a day, came to our hospice straight from hospital where he required support from our Long Term Ventilation staff – which is a specialism we will be expanding to be able to care for more children like Mason.

“Being at Rainbows has brought Mason on so much and it is wonderful,” said Nicole. “With his physiotherapy and special care; it is amazing to see him develop and see his confidence improve. 

“He has done so well; he can sit up by himself again now. And the staff at Rainbows have been great, they seem to have brought him out of his shell. He was really shy with people, didn’t speak to many people. But at Rainbows, he seems to want to talk to everybody and he has learnt to do new things. 

“I felt so comfortable, and trusted everyone at Rainbows. At first I used to really worry about going there with it being a new team of people. But it was so nice to feel at home after spending so long in hospital. The staff are great with me as well as Mason. There is always someone there to talk to and we got proper meals.

“Mason barely left his bed in hospital but at Rainbows, he has been in the hydrotherapy pool and he does arts and crafts. He gets to go swimming every week and he loves swimming. Everything seems possible at Rainbows.”

Julie Taylor, Executive Nurse and Director of Clinical Operations at Rainbows, said: “When Covid-19 hit, it changed everything for our families. We had to respond by changing everything we do. We are introducing a range of new services which our families desperately need to make sure we can still be there for them during the most difficult of times.

“We know that we are currently only helping 36 percent of children in the East Midlands who are dying. And we simply need to be reaching more of these families and it has always been in our long term plan to do this.

“These new nursing roles are all part of a new service model which aims to meet the needs of more families, not just within in the Hospice building, but also in our local hospitals and in our communities.

“We help the East Midlands’ poorliest children and although challenging, the work we do at Rainbows is vital and so rewarding. We work to make every day, for every child, the best day it possibly can be – right up to their last.”

To find out more about becoming a nurse at Rainbows, visit rainbows.co.uk/jobs