Frequently Asked Questions
To date, we have worked with over 200 families but a recent study has shown that there are as many as 1,086 children with life-limiting and life-threatening conditions living in North London who might be eligible for our services.
We are a holistic charity, meaning we work with the whole family, including the siblings of children with life-limiting and life-threatening conditions. Taking these siblings into account there are therefore approximately 2,000 children in our area who could benefit from our services.
Despite the usual misconception of a hospice, it is not always children suffering from cancer who use our services. Any child under the age of 19 with a life-limiting or life-threatening condition can be referred to us.
While a proportion of children within hospices do have cancer, the majority suffer from long term progressive disorders such as Duchenne Muscular Dystrophy, Batten’s Disease and Cystic Fibrosis.
We work on specific criteria outlined by Together for Short Lives
. Some of the criteria we work to include having a life-limiting and life-threatening condition and living within the five boroughs of North London – Barnet, Camden, Enfield, Haringey and Islington.
Life-limited means these children are not expected to live beyond 19 years of age. Life-threatened means that, as a result of their condition, their life is threatened but not necessarily limited.
Anyone can refer a child to us including the family themselves. Most of our referrals come from community nurses but we would like to raise our profile so that we get more referrals from GPs and consultant paediatricians.
While the NHS can offer families medical and practical treatment, there is inadequate provision for respite care or general day-to-day support. Often it is this type of support that a family desperately needs.
Caring for a sick child 24-hours a day is incredibly tiring and, especially if there are other siblings or family members also requiring time and attention, the stress can often be overwhelming for a parent or carer. We hope to make these difficult times a little easier to bear.
We work together with other local charities with fundraising efforts, e.g. North London Hospice, Cherry Lodge Cancer Care and Nightingale Hospice. From a Care and Family Support point of view, we try and work with as many other organisations as possible who may also be involved in the care of the child and family.
No one service can meet all the needs of the child and family, so it is imperative that organisations work together to meet all the needs of these families.
The Care and Family Support Team work with education, health and social services as well as other voluntary organisations.
We are an independent charity with a Board of Trustees. Memorandum and Articles are the governance documents which define the Charity’s aims and activities.
Children’s hospices currently receive little or no statutory funding – therefore we ourselves must raise the funds to build and run these essential lifelines.