Grampian Children's Respite Care
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Mission Statement
Charlie House is an Aberdeen-based charity (Registered as Grampian Children’s Respite Care) established in 2011. Our mission is to improve quality of life for babies, children and young people in the North-east of Scotland who have life-limiting or life-threatening conditions and to provide support to them and their families.
About This Cause
Charlie House (registered as Grampian Children’s Respite Care, Scottish Charity No. SC042643), started in 2011 to address the inadequacy of care and support available locally for children and young people with complex disabilities and life-limiting conditions, and their families in the North East of Scotland. The charity was founded by a local mum who, together with her husband, are parents to an able-bodied child as well as a child with severe disabilities and multiple complex needs who requires 24-hour care. When their son was born, the family tried everywhere locally to get support but there was none as his needs were too complex. Eventually, the family had to travel over 100 miles to the nearest support facility, and this continues to be the case today for many more families. Clearly there was a need for more support to be available locally so to address this they got together with other families in the same position and started developing the idea for Charlie House. An initial research project conducted by the charity in 2011 evidenced the need and has since been supported by additional research, both locally and nationally. The children we support are suffering from complex disabilities and life-limiting conditions meaning that there is no reasonable hope of cure and from which they are unlikely to live beyond childhood. Some of these conditions cause deterioration over time resulting in the child becoming increasingly dependent on parents and other family members for their care. Most are wheelchair bound and many are ‘technology dependant’ meaning they have a need for an array of specialist medical equipment to keep them alive and enable them to live at home, this might include pumps for administering medical nutrition, oxygen therapy, ventilation and home dialysis and suction. Common health issues experienced by the children include sensory impairment, seizures, gastro issues and communication issues and they require help with all areas of everyday life e.g. eating, washing. Caring for a child with complex disabilities and life-limiting conditions puts a great deal of pressure on parent carers and impacts on the whole family. It can be emotionally and physically exhausting and can have a detrimental effect on family relationships and their ability to provide the long-term care that is required. Many of the parents are unable to work as their child needs full-time care at home, throughout the day and during the night. Families report feeling isolated and excluded as their child doesn’t ‘fit’ with any mainstream activities or services. This can lead to feelings of depression and loneliness. Many cannot rely on friends or family for help as the medical needs of the child are too complex and siblings often inevitably become young carers. Having access to regular supported activities, short breaks, information and peer support is vital for parents to continue their caring role and to maintain positive family relationships. Our long-term dream is to have a purpose-built specialist facility in Aberdeen however, while we work towards achieving that dream there is a need to provide support for these special children and their families here and now. We developed a range of activities and services to provide practical and emotional support, this includes; a monthly Activities Club, Siblings Club, Parents Group, an annual activity short break and the provision of a Charlie House Community Team, which includes a Community Nurse,a Children & Families Support Manager and an Activities Coordinator. In addition to this, we host a private Facebook Family Community page which enables us to communicate with the families and for them to receive support and share information with each other at any time. Since the shutdown began, we have seen an 80% increase in requests for support from our families. Many families have been instructed to isolate for 12 weeks so are unable to receive carers into their homes at a point when they have additional demands with siblings at home in need of support and attention. We have changed from face to face support to online and phone support. We have also arranged delivery of 40 isolation packs which include sensory toys, games, arts & crafts and pamper packs; delivered disposable gloves and hand sanitiser; and made available pre-recorded informative videos and on-line activities and resources. Some costs can be met from restricted funding but as the services differ from our standard programme not all meet the funder criteria and therefore represent additional costs when we have no income. Our community nurse is continuing to support families on the ward at Royal Aberdeen Children’s Hospital, liaising with multi-disciplinary teams on behalf of families and offering telephone and video-call support. This is critical as families address concerns around the safety of hospital visits, cancelled appointments and limited access to medical care due to demands in other areas. As the lockdown continues, we anticipate support needs will grow and it’s essential we retain our two designated care workers and specialist nurse in order to meet demand.