With the help of the Scottish Government, we commissioned a ground-breaking piece of research that established, for the first time, the full scale of the number of children in Scotland with life-shortening conditions. It is from this work that we know three children die each week but the more compelling statistic for us was that we are reaching only one of these families. We are determined to reach out to them all.
The ChiSP Study is an internationally recognised and ground-breaking piece of research. Combined with a comprehensive consultation with families who use our service, it has been vital in expanding our knowledge of the needs of families in Scotland. Therefore, we will not only continue to develop our specialist care but also reach out to the significant number of families who do not currently receive our support.
The study highlighted that the greatest number of deaths occurred in children under one year of age. This is a heartbreaking time and we want to make these families a priority. When time is short, we want to make it fulfilling.
Families can be overwhelmed by the responsibilities of 24/7 care, experience financial hardship, lose touch with friends and become incredibly isolated. We will increase the psychological and practical support for the families, and we will help them enjoy special family moments, to help them relax, smile and connect.
Complex diagnoses and medical terms can be bewildering. Travel to and from hospital can be expensive, lengthy and affect the financial security of families leaving them unable to continue to work. We help families understand a complex diagnosis, unfamiliar medical terms and the care needs of their child. CHAS at Home brings our services to families’ homes throughout the whole of Scotland.
We want to work in communities and hospitals across Scotland with all families who have a child with a potentially life-shortening condition, and especially those who currently receive little to no support from CHAS.
We recognise that the scale of need for our services across Scotland is immense. Our ambition is that every family in Scotland who is living with the heartbreaking knowledge that their child is dying, will be supported, cared for and helped to make the most of that precious time.