Hospice Care is Everywhere
We are joining forces with more than 100 other hospices across the UK this week to help raise awareness about the diversity of hospice care.
This year Hospice Care Week, which runs from October 6 to 12, has the theme of Hospice care, everywhere! And Rainbows is no exception to that.
We are much more than a building in Loughborough, we are a service where families can benefit from care and support 24 hours a day, seven days a week. The care offered by the charity to many families is invaluable; however, it doesn’t stop at the hospice. As well as providing care to life-limited children and young people at the hospice, we deliver expert support by a diverse team of professional staff who are instrumental in ensuring families can reach those vital services in their own homes and the wider community. Hundreds of families across the East Midlands have benefited from the broad spectrum of services offered by the family support team, a key facility in the community. The team is there for families throughout the life of their child and through bereavement.
A clinical nurse specialist for palliative care is also on hand to visit families at home to assess a child’s symptom control needs. The Rainbows family support team helps families find their own ways to cope and offers emotional support, which frees families to talk about their fears and worries as well as empowering them to make decisions about their child’s care. They work as a critical link between the information and practical support that’s available to families caring for a child with a life-limiting condition. And at the same time, they’re a familiar and trusted figure who offers true support when times are difficult, particularly through to the end of their child’s life and bereavement.
“Some of our most important support is offered immediately after death,” explained Jo Sims, head of family support. “There are many practical things that need to be done at this time, nobody expects to have to do these things for their children and most of the families would never have had to organise a funeral before. “We show them the process and help them through the chaos at the time when they are incredibly distressed; it is about joining the family on their journey. There is no time limit on things, the door is always open. We aim to work with families to get them to a point where they don’t need us anymore and they are able to continue with their life and move forwards.”
One group, described as a ‘lifesaver’ by some parents is the monthly Parent Carers Group, which is an opportunity to meet other mums and dads in similar situations and share thoughts, ideas and experiences over lunch.
The family fun days led by Rainbows’ outreach play specialist are an amazing experience for families to get together to take part in activities crafts and stories. It is a time for families to relax, be silly and have fun even when times are difficult. The play specialist will also visit children at home to support them to access play. Music therapy, which is also available at home, is an opportunity for a child, young person or their whole family to experience very special moments through music and sensory therapy. Siblings are never forgotten at Rainbows. A sibling support worker ensures brothers and sisters are included in activities, taken on trips and visited at their home or school. The Rainbows youth worker also works closely with teenagers to 30 year olds, both at and away from the hospice.
“Our family support workers liaise closely with each family to uncover their individual needs and how best to provide the support that will really make a difference,” said Jo.
“They also work together with other professionals and organisations involved in the child’s care, whenever they feel this would help. We are very flexible, families can utilise our services within the hospice or we provide the valuable support they may need at home.
“The families we care for and support often just need that reassurance and advice. Although it might seem that sometimes we are a million miles away, we can go to them, and we are always at the other end of the phone; we will always support them. Our families know that we are here for them no matter what.”
Caring for a child with a life-limiting condition changes a parent’s life forever. It is exhausting, rewarding, positive and painful. Edward Olweny (five), was born with Partial Trisomy 9, which means he has an extra chromosome and Cerebral Palsy. Edward suffers from hypermobility, meaning his joints are loose and unstable. He is also visually impaired, so his parents, Gemma and Jamie, cannot take their eyes off him as he is constantly tripping and falling. He has severe breathing difficulties and is unable to talk.
Gemma said: “Our family, especially Edward, love going to Rainbows but for us, Rainbows is so much more than a hospice. For me, I know that there is always someone at the other end of the phone if I need them, no matter when it is or what it is about. I also know that I am able to talk to my family support worker about things that I feel unable to discuss with anyone else and I will be totally supported. The Parent Carers Group gives me a chance to be with other mums and dads who are in similar situations and you don’t feel judged. Together, we enjoy the family fun days, they are just great fun and very soon, Edward’s sister Anya will be benefiting from the sibling support services.”