Care for families who have children with life-shortening conditions brings challenges and rewards, says Babs Henderson
One of the most frequently asked questions about the CHAS at Home service is what does it do? It is a relevant question, but given the complex nature of the care we provide there is no single answer. Like our hospices, the home care service provides support to families who have children with life-shortening conditions, but CHAS at Home supports the families in their own homes – it is, and needs to be, a flexible approach to meet the needs of each individual family.
Recently, for one young mum and her three children it meant a short break to Wemyss Bay Holiday Park. Without the provision of a CHAS at Home nurse, who provided care and support for the daughter who has a tracheostomy and is ventilated, the family holiday would not have been a reality. However, the service meant that the four could get a much-needed and deserved break, with support for the young girl, and time for her mum to relax and rest.
For a young boy we work with who has Duchenne muscular dystrophy, a muscle degeneration disease affecting boys, it was an opportunity to fulfil his dream. A keen and gifted artist, he has always wanted to host his own art exhibition, and again, the CHAS at Home nurses supported him to bring this to fruition. The team also organise fun days out to events such as Truckfest and Belladrum Music Festival, pirate treasure hunts and a circus-themed day involving the clown doctors.
As with our hospices, part of what we do is about preparing young people and their families for end-of-life discussions. Caring for children, young people and their families is at the heart of all that we do and our nurses help to ensure that, with end of life, the wishes and respects of the young people are met and that the family are supported through it.
CHAS at Home first started in 2000 after it was recognised that there was a need to support families in their own homes and operated from the charity’s first hospice, Rachel House, in Kinross. In 2004 the Inverness service was set up at the city’s Highland Hospice for adults. Our third home care team was developed in 2008 at Robin House in Balloch, and most recently in Aberdeen in 2011.
The CHAS at Home service supports more than 100 families a year. The support and skills offered are varied – from nursing care when a child is ill; supporting the family in times of crisis; symptom and pain management; support following a long stay in hospital or end-of-life care.
It can also provide help to those living in isolated areas between their scheduled visits to Rachel House and Robin House. The priority is to ensure we make it as easy as possible for families to access our service and we are able to meet their individual needs regardless of where they live.
The service helps to deliver our vision that children and young people will have access to palliative care when and where they need it. We cannot do this on our own, and we are grateful for the various partnerships we have with other charitable organisations to help us deliver our service.
An example of this is our work with Marie Curie Nursing Service on a project called “Rest Assured” to support over-16s who would like to receive end-of-life care at home. By working together, both CHAS and Marie Curie Nursing Service help the young person achieve their wish of end-of-life care in the comfort of their own home.
Reaching this point has taken nearly 15 years of hard work from our CHAS at Home team and the fundraisers who make everything we do possible. I am proud to be a part of this incredible team, and thank every person that goes above and beyond on a daily basis to care for and support babies, children and young people who have a life-shortening condition, wherever they live in Scotland.
• Babs Henderson is director of care at CHAS