Q Why is there now a children’s hospice in Cumbria?

There are around 300 families in Cumbria who have a child with a terminal or life-limiting illness. The day care facility offered by the hospice went some way to help some of these families but did not meet all their needs.   In June 2005 the hospice launched the £1Million Jigsaw Appeal to convert and extend the children’s unit at the hospice into a full five bedded children's hospice.

Work started in November 2006 to build the new hospice which was completed in July 2007 and became operational in December 2007. 

Q What is children’s palliative care?

The following widely used definition of children’s palliative care provides the philosophical framework that underpins all children’s hospice services:

• “palliative care for children and young people with life-limiting conditions is an active and total approach to care, embracing the physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement.” (act/rcpch 2003,p6)1

Q. How many children within the UK have life limiting conditions?

Current information on the epidemiology of children with life limiting conditions suggests that 12 in every 10,000 children aged 0-19 years in the UK are affected by a life limiting / threatening condition of which about half will require active palliative care at any one time.
(act/rcpch 2003)2

the number of young people aged 13–24 ‘living under the threat of death who require symptom management and daily care’ is estimated at between 6,000 and 10,000 with this number set to increase as improved techniques, treatment and management of terminal conditions leads to life limited young people living longer. (thornes,r 2001)3

meeting the needs of these children and their families takes place in a variety of settings, in which children’s hospice services play a key role.
 

Q. Is Eden House Children’s Hospice suitable for teenagers?

Eden house has facilities that have been developed to support teenagers and young adults. Team members will work with young people who are in this transitional period and provide support and encouragement to help them become as independent as possible and have more control of their lives. Facilities include access to computers, games, music systems and other activities that young people enjoy.
 

 

Q. What models of care does Eden Valley Children’s Hospice provide?

The hospice services offered to the children and young people include a rich array of specialist children’s palliative care, which is delivered currently through specialist respite day care, telephone advice/support, befriending, bereavement support, and hospice key worker contact/visits. (befriending, bereavement support and sibling support is provided to the immediate family and extended family).
 

Q.  For how long can the children’s hospice offer support?

The children’s hospice aims to support a child and family for as long as service is required or appropriate. Sometimes this can mean from diagnosis onwards and sometimes it can mean for many years, depending on the medical condition of the child. The type of support offered will also depend upon the specific needs of the child, parents and siblings at any given time and will be adapted as necessary to best support all family members.
 

Q. Who can refer a child to Eden house?

Any professional can refer a child and family to a children’s hospice if they feel that they are eligible for care. The family or relatives can self refer (with consent from the parent or young person). Referrals from friends will also be considered.

Upon receipt of the referral and with the family’s permission, the children’s hospice will contact the child’s gp and hospital & community paediatrician and other individuals and agencies involved in the child / young person’s care to obtain further details about the nature of the child’s condition and diagnosis. A member of the nursing team will then contact the family to arrange an assessment visit.

If we feel we are able to offer support to the child and family, a detailed plan for the care of the child will be agreed with parents, based on the child’s own special needs and how they are cared for at home. The team works closely with the parents and with other colleagues who are involved with the child, either in a hospital or in the community setting. Most hospice visits and specialist respite stays will be planned well in advance and at each visit the team will take time to review the child’s needs, so that care is always up to date.
 

Q. How does the children’s hospice staff work with other professionals and members of the multi-disciplinary team?

Children’s hospices aim to work in partnership and collaborate with all of the staff and services that provide care to referred families. They work to the same codes of practice regarding confidentiality and data protection as statutory sector services, and have the same requirements for ensuring human resource management policies and procedures are in place for the safe recruitment of staff.

Eden house children’s hospice is a member of local and regional children’s palliative care networks, which embrace all professionals from different service providers and work together to achieve the best care pathways for children and their families. The children’s hospice care team includes qualified nurses who are directly responsible for the delivery of all nursing care. The care team works closely with community professionals i.e. Community nursing team, physiotherapists, speech and language and occupational therapists, teachers, social workers, counsellors, play staff and other staff with specific skills in working with children
 

Q What is a life limiting / threatening condition?

Life limiting conditions are those for which there is no reasonable hope of cure and from which children or young people will die. Some conditions cause progressive deterioration resulting in the child or young person becoming increasingly dependent on their parents or carers.

Four groups may be delineated:

group 1
life threatening conditions for which curative treatment may be feasible but can fail and 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, liver, kidney.)

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.
(examples: batten disease, mucopolysaccharidoses, and 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, brain or spinal cord injury.)

 

Q. How is the children’s hospice service funded?

Eden house is part of Eden valley hospice, a local charity and is funded by the hospice in general.   It costs in the region of £2million a year to fund the work of the hospices. Around 25% of this is met through statutory funding by Cumbria primary care trust (NHS) leaving the hospice the challenge of finding around £1.5million a year to fund its operation from charitable donations. 

Q.  What about standards in the children’s hospices, governance issues and links to the NHS and specialist services?

The children’s hospice services are subject to the care standards act 2000 and is subject to close external scrutiny, inspection and regulation by the healthcare commission.
In addition, the children’s hospice has in place a clinical governance framework. The clinical governance committee includes representation from hospice trustees and hospice staff.

The governance arrangements in the children’s hospice services are also subject to regulation by the charity commission.
 

Q. What about quality of services and quality assurance?

Children’s hospices provide a high quality service that is greatly valued by the children and families who use them, as is evidenced by a wide number of independent research evaluations. (bradshaw, and webb, 1997; nash,1998; phillips and burt, 1999) (act/rcpch 2003)

the association of children’s hospices has undertaken pioneering work to develop a quality assurance tool for use across the children’s hospice sector. The quality assurance package,’ are we getting it right?’ (ach 2004) is unique in that it has been built from the views of children, parents and staff working in children’s hospices as to what is valued within children’s hospice care. It aims to promote consistent standards of care in all children’s hospices. The association of children’s hospices benchmarking group enables children’s hospices to work together to identify ‘benchmarks’ of good practice against which children’s hospices can assess various aspects of their services.