Refer a Patient
Caring for a child with a life limiting condition carries with it an emotional and physical burden for the whole family. The network of Children's Hospices now established throughout the country goes some way towards meeting these families' needs for an active and total approach to care. Butterwick House is an important part of the 'menu' of service provision available locally for life limited children and their families.
Butterwick House is a modern, purpose built Hospice which maintains a 'home away from home' environment, caring for families who have a baby, child, teenager or young adult (age 0 - 25) with a life limiting condition.
Paediatric Palliative Care has been defined as:
"Palliative Care of Children and Young People with a life limiting condition is an active and total approach to care embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support to the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement."
ACT and The Royal College of Paediatrics and Child Health 2003
Packages of care are provided on a case by case basis, which may include the option of residential respite care, day care, complementary therapies for both children and parents and a family support service. There is a categorisation system in place which is:
- For children with changing or deteriorating health care needs
This category is used for children who have unstable health care needs, which may stabilise in the future, or children for whom this is their place of choice for end of life care.
- For children with stable health care needs
Although stable, these children may need a considerable level of care.
- For families who have an additional pressure: e.g. parental illness, new baby
The child and family's needs are reviewed at least once each year and the level of care can be changed at any time as the circumstances dictate.
An individual package of care may be negotiated in special circumstances.
If a child becomes less well, whilst resident at Butterwick, there is a policy of active treatment unless there is a specific protocol in place for supportive treatment only. Such a protocol will have been drawn up in negotiation with the parents, the child, if appropriate, and their wider care team. The protocol is subject to regular review.
- The Care Team consists of the Clinical Lead, Senior Hospice Physician, Sick Children's Nurses, Learning Disabilities Nurse, Nursery Nurses and Health Care Assistants who aim to meet the child's physical, emotional and spiritual needs. Children's Nurses are always present and are able to provide care to children who need a considerable level of nursing expertise.
- The Family Support Team offer counselling, advice and liaise with other services.
- Qualified Complementary Therapy practitioners provide a range of therapies to ease sleeplessness, stress and symptoms. The service can be accessed either as part of a booked stay or as a day care service.
- Medical cover is provided by the Senior Hospice Physician. The Paediatric Department at North Tees Hospital, which is in close proximity, provides emergency back-up.
- The whole team works towards providing an environment where children and their families can feel safe, play, make choices, have fun, be listened to and feel supported. Most importantly each child and family are recognised as being unique and special.
Butterwick House mainly cares for children from Teesside, Wearside, County Durham and North Yorkshire, children from outside this area will be considered if it is the family's chosen place of care. Children referred will have a progressive, life limiting or life threatening illness. The unit cares for young adults until their 25th birthday.
Referrals can be initiated by family members or professionals.
Families wishing to refer their child to Butterwick House should contact the Clinical Lead on 01642 607748 who can advise them on the correct procedure in their area.
Any healthcare professional can initiate a referral to Butterwick House by contacting their local continuing healthcare nurse or social worker
End of Life Support
Professionals can make a referral for end of life support by contacting the Clinical Lead on 01642 607748
As a guide, children would be expected to fall into one of these categories:
- Diseases for which curative treatment may be feasible but may fail.
- Diseases in which premature death is anticipated but intensive treatments may prolong good quality life.
- Progressive diseases for which treatment is exclusively palliative and may extend over many years.
- Conditions with severe neurological disability that although not progressive, lead to vulnerability and complications likely to cause premature death.
These children will have a progressive or life limiting conditions and will benefit from an environment which can meet their physical, emotional and psychological needs and support their family.
Families may wish to consider the service for end of life care/support.
For all new referrals the child's health and social needs are considered by a multidisciplinary panel of which the Hospice is one part.
Early referrals are welcome for children who have a condition where increasing health care needs can be anticipated. At times of change children and families are more comfortable with known services and familiar faces, therefore early discussion and referrals are encouraged. If you are unsure whether a referral is appropriate, please phone to discuss the case.
Communication and review pathways are maintained with the child's local team. We participate in the established local review systems where possible.
An annual review is undertaken with each family to ensure that Butterwick continues to be the appropriate place of care and that the appropriate category of care is being provided.
Death and Bereavement Services
Inevitably, each year some of the children using the service will die and every effort is made to offer end of life care and support, in accordance with the family's wishes. After a child has died, whether in the unit or at home, there is a facility, known as the Sunflower Room, suitable as a place of rest before the funeral takes place.
Bereavement support is also offered, either via the Care Team or a Family Support Worker.
For more information about this service do not hesitate to contact us by telephoning the Children's Clinical Lead on 01642 607748 or email [email protected]
Butterwick House is registered with the Care Quality Commission and is subject to inspection. You will find a link to our latest inspection report here.