What is Hospice to Home?
The hospice to home team brings all of the services offered at the hospice into the family home in order to offer choice to children/young people and their families.
The team is led by Lesley Fellows along with a team of highly skilled registered nurses and health care support workers (HCSW) who are dedicated to supporting families in their own homes. The team has access to the play specialists, physiotherapists, music and complementary therapists to provide holistic care.
The team are based at Claire House and a satellite base in Liverpool from where they outreach to children and young people from Merseyside, Wirral, Cheshire and parts of North Wales.
Home respite care
The hospice to home team offers sessions of respite care at home to respond to crises or emergencies that may arise. This could include step down care from hospital following surgery or a period of illness; acute illness at home i.e. chest infection; social crisis; end of life care and other unplanned situations.
The respite we offer at home is planned on a week to week basis depending on the needs of the case load and we try to respond to all that require care where and whenever we can.
Following a child or young person’s death, the team will continue to support the family. Should the family wish for their child to be transferred to the Butterfly Suite at Claire House where a child can stay as an alternative to a funeral home, we will help to arrange this. Should the family wish to stay at home with their child we are able to work with local funeral directors to enable this wherever possible.
Helping families at this difficult time will be very individual and can range from practical support such as registering the child’s death and funeral planning to emotional support such as collecting mementoes and supporting siblings through memory boxes.
Following a child’s funeral, we will continue to maintain contact with the family through cards, telephone contact and home visits and will refer to the counselling and/or complementary therapy service where appropriate.
Family support and one to one counselling is available from the point of referral and can continue through bereavement and beyond. Dedicated counsellors can offer support and counselling to the whole family. Person centred bereavement support is offered to all families who have experienced the death of their child, this can be on a one to one basis and/or as part of a group with other bereaved parents. All bereaved families are also invited to the annual ‘Memory Day’ celebration.
The session’s main aim is parental peer support. There is opportunity for parents to join in the activities but just as important, they can have a chat over a coffee with other parents.
Nurses are at hand at all times to help with any clinical care needed but are also a source of information and advice.
Often many of the children/young people accessing Claire House spend prolonged amount of time in hospital whether it be Alder Hey Children’s Hospital or the local district general hospital. We recognise that this can be a very stressful and difficult time for both the child and the family.
The Hospice to Home team visit Alder Hey and other DGH’s in the Claire House footprint regularly to support children and families that are inpatients and to keep abreast of the child’s clinical care. When we can, we often offer to sit with the child or young person for a few hours to give parents a little break from the ward, whether it be to get a meal, take a shower or pop home for a few hours as we are aware how difficult it is to leave their child.
The team can also attend any clinic appointments should a parent wish for some additional support and be a source of advice or information.
Symptom management and step down care
Many of the children and young people accessing Claire House services may experience some difficult symptoms throughout their lives, whether that be pain, nausea, respiratory difficulties, seizures, spasms and will require assessment and management.
The Hospice to Home team are able to work in partnership with the child’s consultant and other professionals involved to assess symptoms, implement any symptom management plans and review how effective they are.
Step down care (help leaving hospital) following prolonged hospital admission or major surgery (e.g. spinal rods) can also be arranged to support parents prior to going home.
In addition to conventional medical and pharmacological approaches, with agreement from the child/young person’s consultant we can offer complementary therapies i.e. reflexology, aromatherapy, reiki etc. to aid symptom management.
Advanced care planning
Sometimes families worry about what might happen if their child suddenly or unexpectedly becomes unwell. Talking through what might happen can help reduce some of these worries and concerns and having such discussions documented in an advanced care plan often reduces how often these difficult conversations are needed.
End of life care at home
When end of life approaches, the hospice to home team feel that families should have the choice and be empowered to continue caring for their child at home if that is what they wish. In order for this to happen, the hospice to home team offer a 24 hour on-call service where one of the senior nurses can be contacted any time of the day or night for telephone advice or home assessment visits to manage symptoms. This service works in partnership with the specialist palliative care team from Alder Hey and the child/young person’s local community nursing teams.
The on-call team are specialist nurses who have undertaken palliative care, advanced clinical skills and non-medical prescribing courses which enables timely assessment and management of end of life care symptoms.
During end of life, the team are able to offer help and support around personal care and some home respite care to allow parents to take a short break from caring, whether it be to catch up on some sleep, take a shower or spend some quality time with siblings.
We strive to make a difference to the child and family during this extremely difficult time by helping families create lasting memories. We can arrange wishes and dreams on behalf of families and gather mementoes such as hand and foot prints, perfect charms and professional photographs.
Once a child has died at home, we offer bereavement support whether that be transferring to the Butterfly Suite at Claire House or supporting parents at home arranging personalised funerals.