I am not overly happy standing up and talking to a group of people and this will be uncomfortable. My boss at work has kindly offered me a ten minute slot at a meeting for the whole of finance to talk about the work of the Sussex Snowdrop Trust and Chestnut Tree House.
I have given my presentation to my work colleagues and survived! This was my script for the presentation (with photos removed):
For my 40 challenges Holly challenged me to do a talk to a large group of people about something that I am passionate about. Paul suggested using the finance team brief as my audience and to talk to you about the two charities that I am fundraising for.
Finding out that your child has a life limiting or terminal illness is about as life changing as it gets. And it is at times like this that you need all the support that you can get to navigate your way through the challenges that occur. It is a time when you expect that the NHS and social services will meet every need that your family has. However the reality is not quite what might be expected and that is when these two charities step in for hundreds of families, like they did for ours.
The Sussex Snowdrop Trust was set up in 1993. They are a unique charity providing ‘Care at Home’ for local children who have a life-threatening illness or who are terminally ill. They are currently supporting 69 ‘Snowdrop’ children and their families. Some spend time in hospital receiving treatment or undergoing an operation, but most are at home. The charity spends approximately £350,000 a year on direct family care. The principle area is care at home delivered by Children’s Community Nurses & Nurse Support Workers, helping families to cope with having a very sick child at home, the best place to be.
The Children’s community nurses provide care and treatment to prevent admissions into hospital for care that can be delivered outside an acute setting. They visit the child at home or school to give medication, health checks and carry out procedures. In the photo you can see Rebecca being fed with a NG tube, something that we were taught by our nurse and supported with for both our girls. They provide training and medical advice to enable families and school staff to cope with the increased needs of sick children. They provide a huge amount of support and encouragement to enable families to be confident in providing care for children which is outside of the scope of what most parents have to deal with. They help parents to believe that they can look after their poorly child.
The nurses also act as a lead professional in ensuring that the multi-professional team that are involved in the care of a child are co-ordinated. They liaise to ensure that appropriate care is available from the right professional at the right time
They are actively involved in ensuring that hospitals are fully aware of the holistic needs of the children and that each child’s non-acute care needs are met whilst in hospital. They regularly visit the children in hospital to ensure that there are clear discharge plans and that they can meet the needs of children when they are discharged. You can see Rebecca when we were in hospital, the nurses had encouraged getting Rebecca out from the ward and get some fresh air, all wrapped up and with oxygen!
The nurses also advocate on behalf of the child and family to ensure that they can access the support and equipment that is required. Our nurse worked hard to support our difficult conversations with commissioners and community equipment services. When it was proposed that Rachel be given a floor to ceiling cage bed, that resembled something that you would see in a zoo, she fought long and hard to ensure that we could get an appropriate bed for Rachel. The bed we got was perfect and met Rachel’s needs from when she was fully mobile through until all Rachel could move was her eyes.
Snowdrop also provide practical support for families through their counsellors and volunteers. The counsellors become involved as and when required and can speak to individuals or to the family. They provide emotional and practical support to families. There is a family co-ordinator who meets families and places suitable volunteers. The volunteers carry out a wide range of services for families. They provide support in areas such as transport for hospital appointments, babysitting, sibling support and, just as important, become a friend.
Snowdrop provide also practical help. They fund a range of essential equipment that is not funded by social services or the NHS. For example it is not deemed an essential that you can transport your child in a car so an appropriate car seat is not funded by social services. Any equipment that is for a disabled child has at least an extra 0 put on the price. The car seat for our girls was about £3,500 plus VAT and we needed it now. They organised the purchase and fitting of the car seat which meant that we could maintain as much normality for our girls as possible.
In the past few years the charity have funded:
- Taxi fares to Great Ormond Street Hospital
- Trampolines, drum kits and bicycles for children with cystic fibrosis for exercise
- Special beds, chairs, car seat and, pushchairs for sick children
- Computers/laptops to help children who have missed days, weeks and sometimes years of schooling to communicate with family/friends whilst in isolation wards and to be “a window to the world” whilst being housebound
- Waterproof duvets, beds and washing machines/dryers for incontinent children
- Funeral costs
- Helping with rent, electricity and other household bills
Snowdrop believe that it is important to help families have enjoyable times with their child and organise a range of events that are suitable for children with a broad spectrum of needs in an environment where the children are accepted as they are, without being treated as unusual. They organise Christmas parties for the ‘Snowdrop Children’.
And an Easter party with a load of bikers and their Harley Davidsons. Where else would you find Snow White on a Harley?
They organise days out at venues suitable for disabled children, including somewhere where the girls could hold and stroke animals.
Their support in helping families make memories with their child is very underplayed but was one of the most important elements of support that we received, and those happy memories will stay with us.
Chestnut Tree House is the only children’s hospice in Sussex and cares for over 300 children and young adults from 0-19 years of age with progressive life-shortening conditions. Their care services extend to the whole family – not just the child, but mums, dads, grandparents, sisters and brothers. Their aim is to make every day count. The good days, the bad days and the last days. Chestnut Tree House costs approximately £3 million each year to run.
Chestnut Tree have a purpose built building that was designed to meet the needs of the children and their families in a home from home environment. The architect spent time with children to find out what was important and designed the building in response to this feedback, with some unexpected features such as many ceilings being the same height as a standard house as the children related high ceilings to hospitals and often unpleasant experiences.
The aim of the house is to provide respite care and end of life care to the children registered with them. Subsequently the house is not what most people expect the first time they visit. The house is bright, colourful, airy and often filled with laughter. There is a real sense of life and the value of life which leads to ensuring that the children have fun when they are at the house. All the children love going to the house and love the staff, who clearly feel the same about the children. For the parents, the opportunity to leave their children safe in the knowledge that every aspect of care will be met from their health needs through to reading their favourite stories at bedtime is invaluable.
Whilst staying at the house each child has one to one care from either a nurse or a care support worker depending on their needs. That named member of staff will look after their child, meeting every aspect of the child’s care,
Including their play and entertainment.
There are ten children’s bedroom, six in the younger children’s wing and four in the teenage wing. The bedrooms are all single rooms (although they facilitated both our girls sharing a room as that is what they wanted). All of the rooms are equipped with tvs and dvd players and the staff prepare the rooms to take into account the likes of each individual child such as the bed linen, books, toys and dvds. There was always a significant Disney theme in the rooms allocated to our girls!
Each room has its own small private section of the garden with access to the wider garden. The large windows and doors make each room very bright and airy.
The house has a range of facilities for the children during their stay, including a hydrotherapy pool and a Jacuzzi with multi-sensory facilities.
The staff ensure that the children are able to make full use of the swimming facilities supporting them in the water.
They have a messy play area,
And a Multisensory room.
The house has its own catering team who provide food for the children, catering for all their needs and offering a wide range of choices. They also provide food for any families that are staying and were even able to cope with all of my freak food needs!
The house has eight bedrooms so that families can stay with their children, should they wish to,
And a family lounge and kitchen. The family suites are on the first floor of the house and the children do not access this area. This allows parents to have a break whilst still being on site should anything happen. The opportunity to stay with the girls whilst all their care needs are met meant that we could spend some time doing ‘normal’ parent things rather than dealing with personal care, medication or feeding tasks.
Chestnut Tree House also provide an outreach service with a named nurse or care support worker. This team offers respite in the home, organises day care and activities at Chestnut Tree House
Including activities like a visit from Fr Christmas and his reindeer. They also organise daytrips from Disney on ice to England rugby games.
Chestnut Tree house provide play and creative arts therapy for children with illnesses and for their siblings to help the children cope with the tragic circumstances that they find themselves in. As you can see from the picture the therapist is a popular lady! Parents and grandparents are offered counselling or a bereavement support worker and there is a chaplain available should anyone wish to speak to him.
Chestnut Tree House offer end of life care support either in a child’s home or within the hospice. During those last precious moments the staff ensure that the child is as comfortable and pain free as possible
Helping families to make those last precious memories.
Chestnut Tree House have a bereavement suite that provides complete privacy for the bereaved family, with exclusive use of the kitchen / lounge area and private garden. It also includes a special adjoining bedroom for the child to lay at rest until the funeral. The staff provide as much or as little support in organising the child’s funeral as the family require.
The services that these charities offer are fundamental for families struggling to come to terms with the logistical, financial and emotional impacts of having a child who has a life limiting or terminal illness. I want to do what I can to ensure that families in a situation like mine have access to these services to enable them to not just cope with their situation but to be able to make the most of the precious moments that they have with their child.