CVSC - Tŷ Gobaith Eng

Tŷ Gobaith Children’s Hospice provides care and support for terminally ill children all across North Wales. The new key working service was supported by the Clocaenog Forest Wind Farm Fund, and the monies enabled them to support 7 local families over a year.

Key workers act as a dedicated point of contact for families providing regular, proactive, emotional and practical support, coming to know the families incredibly well and offering an invaluable additional level of care in between hospice respite visits in families’ own homes and communities. Tŷ Gobaith trained key workers in resilience and communication skills to increase their confidence and develop their skills, particularly around difficult conversations and challenging situations.

Tŷ Gobaith’s key workers have organised and attended appointments alongside teenagers moving into adult medical care services, helping to reduce both the “administrative” burden faced by families in this position and the anxiety that can come with such a big change. They have organised and co-ordinated school attendance during hospice respite visits (something which did not happen previously – if the child attends school, they previously had to take time away from their education to stay at the hospice) and arranged additional respite care for parents who are unwell and need time to rest. Having one dedicated work for each family means that they come to know the families incredibly well and can provide highly individual, tailored support.

Regular contact with families means the key workers have been able to identify families in need of additional support, advocate for them and book them in for additional respite stays – for example, when parents need time to recover from COVID vaccinations or siblings need more support at home while sitting exams. Families are allocated a set number of respite stays per year and many will not reach out to ask for more, either because they are unaware that they can or because they feel uncomfortable doing so. The proactive support from key workers means they are able to easily identify these families and provide more respite care as and when it is needed, having a huge impact on the mental and emotional welfare of the whole family (in Tŷ Gobaith’s Family Voices survey, 94% of families identified respite as the most essential service and the main service they wanted more of).

“Recently, a family were supported extensively by their key worker following a significant deterioration in their child’s condition which required admission to PICU, after which the child sadly died. The child was transferred from hospital to our Snowflake Suite for care after death and the family stayed in the hospice alongside their child during this time. The key worker arranged for the family to have hand and footprints taken to create beautiful silver memento jewellery and also supported them to make arrangements for the funeral. Supported by our deputy head of care, the key worker continues to work alongside the bereaved family following their child’s death and has referred them to our counselling team for specialist bereavement support”. – Tŷ Gobaith Trusts Officer.

One family said: “The key worker has been a ‘listening ear’ which is always vital when you have a challenging set of circumstances”.

Thanks to the funding, Tŷ Gobaith have been able to pilot key working for their families all across the Clocaenog area of benefit. This means they have been able to spend a year finding the best ways of working and proving that the service makes a huge difference for the families in their care, meaning that key working has now become a core hospice service.