Can we help?

Hope House exists to provide hospice care in a child centred environment. Anyone can refer a child to Hope House whether they are a doctor, other health care professional or family member. All we ask is that the child’s parents or person with parental responsibility agree to the referral and that they are aware of our criteria.

Once a referral has been made we need to obtain written consent from the parent/person with parental responsibility. This enables us to request medical information from the child’s Paediatrician and General Practitioner for use by the Hope House referrals panel.

The panel is made up of the hospice medical officer, senior nurses and social work staff who decide whether or not a referral is accepted. They need to see that, in the opinion of medical professionals involved, the child or young person is not expected to live beyond early adulthood.

We care for babies, children and young people with a range of conditions:

• Group 1: Life threatening conditions but for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails. Children in long term remission or following successful curative treatment are not included. (Examples: cancer, irreversible organ failures of heart, kidney, liver)
• Group 2: Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. (Example: cystic fibrosis)
• Group 3: Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years. (Example: Batten disease, Mucopolysaccharidoses, Muscular Dystrophy)
• Group 4: Irreversible but non progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. (Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury)

What happens next?

It is very important to us that we build a close relationship with the child or young person and their family so we can best help them through the difficult times ahead. Once they have been accepted we are then able to plan a minimum amount of respite for the coming year.

Our service is flexible and the number, and length, of the visits to Hope House depend upon a number of factors, including the current health of the child or young person and the requirements of their family. We can care for a child while other family members take a much-needed break or work alongside the family to help with the daily routine. This support may also include skilled nursing care within the family’s own home.

No charge is made to the families who use Hope House.

The Care Team is made up of a variety of health and social care professionals to facilitate a multidisciplinary approach and enable true holistic care. The Medical Officer is a local GP with additional qualifications in palliative medicine.

Outreach Nursing

Experienced children’s nurses and trained carers are able to provide emergency and terminal nursing care within the family home.  This may be during a particular family crisis or when the child or young person becomes very unwell.  Occasionally it may be possible to provide planned respite within the home, though this depends upon the number of emergencies the Outreach Team are dealing with at that time.

Sibling Support

Building Bridges is our sibling support programme which includes a variety of age specific activity days and outings during which brothers and sisters can meet up and share concerns with others who truly understand what it is like to live with a life limited sibling.  We also offer individual work with children and young people.  Bereaved siblings are supported by specially trained staff either individually or in small, therapeutic groups.

Support groups are also run for parents using the hospice and small focused groups are organised periodically for bereaved parents.

Social Work Support

The Social Work Team provides advocacy, guidance and support to the children, young people and families who use Hope House.  They may also provide financial advice, help with housing adaptation applications and support with transition to adult services.

Bereavement Support

Bereavement support will be offered to all families following the death of a child for as long as the family needs it.  This support may be delivered by a variety of professionals within the care team and may range from formal family counselling to informal befriending.  Annual remembrance services are held and all families who have lost a child are invited to attend.

Counselling

A Family Counsellor is employed to offer support to all Hope House families.  This may be on an individual basis or in a family group, both pre and post bereavement.  Referrals for this service will also be accepted from families in the wider community who are affected by childhood bereavement, often in very traumatic circumstances.  Support for families may also be offered by specially selected, appropriately qualified and experienced volunteer counsellors.

Hope House Children’s Hospices is a registered charity with annual running costs of £3.5 million. A small percentage of our funding is met by the government but we rely on donations from the general public to continue these services.

To make a referral to Hope House or to discuss our services further  please call 01691 671999 or email care@hopehouse.org.uk