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AN OVERVIEW AND UPDATE, AUGUST 2015 Our charity supports children and young people with life-shortening conditions and their families across Calderdale, Kirklees, and Wakefield. Our vision is for all of these children and families to receive the help they need. Towards this end, we offer both a Hospice at Home service and hospice-based services that are responsive to child/family needs and as joined-up with other services as possible. We are rated as Outstanding by the Care Quality Commission.

Some of the children we have cared for so far We currently support 150 families. Within this, 90 children and their families are supported by our wide-ranging Hospice at Home service, supplemented by day care, planned short breaks, 24/7 residential provision, and end-of-life care in our state-of-the-art hospice (Russell House, Huddersfield). A further 60 families have access to bereavement support for as long as required.

Russell House, with HRH Princess Beatrice

The ‘Hub’ – centrepiece of the hospice

We are having a significant impact on children’s and families’ lives. This is illustrated by ‘Jawad’s story’. Jawad is an 8 year old boy with a rare genetic condition, Carbohydrate Deficiency Glyco Protein Syndrome. Following an initial referral from a family liaison worker at his school, Jawad and his family have received much-needed support from the hospice. Jawad’s mum spoke about the difference this has made and continues to make – please see overleaf. Demand is expanding rapidly, reflecting that there are over 700 local children and families who would benefit from the service, according to recent University of Leeds research. In light of this, we will significantly increase the number of children/families supported over the next year. Page | 1


Jawad and his mum. Mum provided the following feedback… “The first few years were very hard. It was lack of sleep, tiredness, and I ended up shouting at the children. I wasn’t living a life, I just had to get through each day. I was tearful all the time. “Since we’ve had [the hospice service] it’s been brilliant. They do it in such a way that you don’t feel they’re taking over – they don’t do anything without asking you first. “When he goes to stay at Russell House he absolutely loves it. He thinks he’s going on holiday – we just pack his suitcase and he loves it there. It’s a lovely place. You feel like you can just be yourself with your family. We can ring at any time to see how he is; I sometimes ring at 2.00 or 3.00 in the morning. “They come to our home and help with bathing, dressing, giving medicines, playing, and activities. They are just lovely people – the children get on with them so well and look forward to them coming. It gives me time to do things I don’t get time to do, like spending time with my older children and doing homework with them. “Life was really hard before. Now my life is more organised and I look forward to the next day”. There is considerable opportunity to expand the impact we have on children’s and families’ lives. With this in mind, major developments going forward include:  continuing to reach more families with care that is valuable and meaningful to them and of the highest quality  ensuring our growing Care Team is resourced and supported to work effectively and efficiently  transforming our grounds into an enchanting place for children and families to enjoy. Of course, all of this costs money. We need to raise at least £3.8 million per year to sustain our service provision, let alone respond to rising demand, in order that we are always able to serve the needs of children and families. Currently some 5% of our ongoing running costs are funded from Government sources, so the generation of sustainable funds is a major focus. Many partners are supporting our high-impact work – could you join them? Further information:  Forget Me Not Children’s Hospice, Russell House, Fell Greave Road, Huddersfield HD2 1NH  ian.leedham@forgetmenotchild.co.uk / tel 01484 411040  www.forgetmenotchild.co.uk / Registered Charity Number: 1110457 Page | 2


Forget Me Not Children's Hospice Update Aug 15