Referrals at Rainbow Place and Next Steps
Caring for a child or young person with a life limiting illness can be difficult. Rainbow Place care provides support for families/whanau caring for a child with a life limiting condition. Care is tailored to each family’s unique situation.
Who can be referred to Rainbow Place?
Children and young people who have a serious life-limiting or life-threatening condition.
Children and young people affected by the serious illness of a close family member who is under the care of Hospice Waikato adult services.
Who can make a referral?
Healthcare professionals
Families, friends and relatives
Support is available at Rainbow Place, in the home or in other community settings, e.g., schools, Marae.
Please click here to submit an online referral form
Referral Criteria
Four broad groups of life-threatening and life-limiting conditions may be described below. Categorisation is not easy and the examples used are not exclusive. Diagnosis is only part of the process; the spectrum of disease, severity of disease and subsequent complications and the needs of and impact on the child and family need to be taken into account.
Identifying eligibility for Rainbow Place Services
When a baby, child or young person has a diagnosis of a life threatening or life-limiting condition, an early referral to Rainbow Place Hospice services can help manage this uncertainty by developing a flexible and parallel care plan to manage the eventual outcome.
Category 1: Life-threatening conditions for which curative treatment may be feasible.
Provisions of palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of threat to life. One reaching long-term remission or following successful curative treatment, there is no longer a need for palliative care services.
Example: Extreme prematurity, severe necrotising enterocolitis, congenital heart disease, irreversible organ failures of the heart, liver and kidney and cancer.
Category 2: Conditions where premature death is inevitable
There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
Example: Chromosomal abnormality, severe spina bifida, bilateral multi-cystic dysplastic kidneys, bilateral renal agenesis, cystic fibrosis, Duchenne muscular dystrophy.
Category 3: Progressive conditions without curative treatment options.
Treatment is exclusively palliative and may commonly extend over many years.
Example: Anencephaly, skeletal dysplasia, severe neuromuscular disorders, batten disease, mucopolysaccharidosis.
Category 4: Diseases with severe neurological disability, which may cause weakness and susceptibility to complications. While not progressive, these diseases lead to vulnerability and complications likely to cause premature death.
Examples: Severe hypoxic ischaemic encephalopathy, severe cerebral palsy, multiple disabilities such as the following brain or spinal cord injury, complex health care needs/high risk of an unpredictable life-threatening event or episode.
All referrals will be reviewed by our triage panel who meet daily. A decision to accept a family will be made on whether they meet our criteria.
All the children and young people who access Rainbow Place will be reviewed annually to ensure they continue to meet the Hospice Waikato criteria.
Review findings will be discussed with parents/caregivers before any final decision is made. If you are unhappy with this discussion, please email us detailing your concerns to our Clinical Nurse Manager at rainbowplace@hospicewaikato.org.nz
Next Steps
What happens after a referral?
Children and Young People
On-going Care - Children and Young People (0 – 18 Years Old)
Whilst your child/young person is still in the hospital, a Rainbow Place nurse will be allocated to your family for the duration of the care.
Your nurse will make regular visits, to develop a trusting and ongoing relationship, helping to develop a flexible and parallel care plan alongside you and the multi-disciplinary team. Your Rainbow Place nurse will play a key role in ensuring your goals of choice and location of care are adhered. This could include:
· Support around Advance Care Planning
· Support to Liaise with the medical professionals involved in caring for your child.
· Transfer home and ongoing care and support in the home
· Accessing additional Hospice Waikato family services team support (e.g,. counselling, social worker, spiritual care, music therapy and massage therapy.
· Respite Care
· Short Term equipment loan
· Symptom management care
· Transfer to the Hospice Waikato in-patient unit with appropriate RN care and support.
On-going care – Babies (0-6 months)
Whilst your baby is still in the neo-natal unit, a Rainbow Place nurse will be allocated to your family for the duration of the care. The nurse will make regular visits to talk with you and your family to develop a trusting and ongoing relationship to help develop a flexible and parallel care plan alongside the multi-disciplinary team. Your Rainbow Place nurse will play a key role to ensure your goals of care and location are met. This could include:
· Support around Advance Care Planning
· Support to Liaise with the medical professionals involved in caring for their child.
· Transfer home and ongoing care and support in the home
· Accessing additional Hospice Waikato family services team support (e.g,. counselling, social worker, spiritual care, music therapy and massage therapy.
· Respite Care
· Short Term equipment loan
· Symptom management care
· Transfer to the Hospice Waikato in-patient unit with appropriate RN care and support.
Care when you need it the most - End of life care.
Rainbow Place will support you throughout the end-of-life process, including:
· Ensuring your goals of care are heard with support in developing an end-of-life plan for your child/young person and this is shared with your multi-disciplinary team.
· Symptom management at end of life, in conjunction with paediatricians and neo-natologists.
· 24 hours on call nursing care and support for end-of-life patients either in your home or at the Hospice Waikato in-patient unit.
· Supporting families to make memories.
· Practical help for families including funeral planning.
· Continued bereavement support and care.
Referral to Rainbow Place does not mean automatic acceptance into Rainbow Place services. Our services are based on an assessment of need. Not all services are available in all areas.
