Frequently Asked Questions
Q: What does Rainbows do?
A: Being told your child will die before you do is every parent’s worst nightmare. But that nightmare is a reality for an estimated 20-25,000 families across the UK. Some of these children will die when they’re very young; others will deteriorate slowly over a number of years. In most cases, full-time care falls to the parents – 24 hours a day, seven days a week.
The families affected are under huge emotional, physical and financial strain. Rainbows helps children and families in these situations to deal with the emotional and physical challenges they face and to make the most of life. Rainbows offers specialist respite, palliative and end of life care to children and young people with life-limiting conditions. We welcome the whole family for a break in friendly, homely surroundings and provide practical help in people’s own homes. We offer a wide range of services including specialist care, telephone support, advice and information, and bereavement support for all family members. We are an independent charity that relies on donations from the public to continue our work.
Q: What kind of care does Rainbows offer?
A: Rainbows aims to meet all the needs of children and their families -
physical, emotional, social and spiritual. Care is provided by a team of specialists from a wide range of professional disciplines who work closely with each other and with others involved in supporting the family.
Providing short breaks forms a large part of the work of Rainbows. Sometimes families may ask hospice staff to care for a child in the home. Even a couple
of hours of home care gives parents or carers the opportunity to spend quality time with their children or leave the house to get some shopping done. At other times, the whole family will stay at Rainbows for up to a fortnight at a time, using the comfortable family rooms and living areas.
We also provide:
• Therapies for children, including play and social activities
• Help with symptom control
• Enjoyable activities for the brothers and sisters of children being cared for
• Advisory support to families and professionals
• End-of-life care
• Pre- and post-bereavement support for all family members.
• highly specialised clinical care
• day care
• residential short breaks
• telephone support
• bereavement support
• terminal care
• emergency care
• music therapy
• multifaith chaplaincy
• sibling support
• complementary therapies
• occupational therapy
• physiotherapy
• play therapy
• contact or key worker support
Q: How much money does Rainbows need to provide its services?
A: With all 12 beds open it will cost £4.1 million to run the hospice.Q: What geographical area does Rainbows cover?
A: Rainbows supports families throughout the East Midlands region.
Q: Is Rainbows a sad place?
A: No. Rainbows is a place for living and enriching lives. The hospice helps children and young people reach their full potential and get the most out of their short lives.
Q: What is palliative care?
A: Palliative care is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on the enhancement of quality of life for the child or young person and support for family and friends and includes the management of distressing symptoms, provision of respite and care through death and bereavement.
Q: Who uses Rainbows?
A: Children and young people from birth to 30 years of age and their families, friends and local community support agencies. This currently includes approximately 225 children and their families. Using an average factor of 5 beneficiaries per family eg siblings, parents etc, this equates to 1125 beneficiaries. The hospice also supports 165 bereaved families.
Q: Who sets the rules and standards for care?
A: The Department of Health set the rules and standards (Care Standards Act 2000). These are monitored by the Healthcare Commission who inspects hospice services.
Q: What are the current facilities at the hospice? (need to merge these questions/answers now
A: 14 single bedrooms fitted with intercoms and call bells
• Adapted bathrooms with multi-sensory equipment
• Accommodation for the whole family, including 4 double bedrooms with en-suite facilities and a separate parent sitting room/kitchenette
• Sitting room and dining room for the use of children, young people their families and staff
• A large enclosed garden with play equipment adapted to meet all children’s needs and Eco garden
• Remembrance garden
• Multi-sensory room and portable equipment
• Soft play room
• Music room
• Teenage computer room with 5 computer workstations – two of the monitors are touch screen
• Multi-sensory bathroom
• Play/activity room
• Quiet room – a suite of rooms for children/young people who have died and their families
• Complementary therapies room
• 2 minibuses used to take children/young people on outings and 2 cars adapted to take single wheelchairs
• 2 hospice cars (on loan)
• Hydrotherapy facilities
• 2 therapy rooms – an occupational/physiotherapy room and separate complementary therapy room
• Social areas e.g. sitting room for young people
• Llibrary and resource facilities
• Training and education facilities
• Specialist bathrooms
• A counselling room
• Family/staff kitchen
• Young peoples’ sitting room/activity room
• Quiet sitting room
• Large social room/cinema/meeting room
Some facilities will be upgraded and extended. These will include:
• Soft play room
• Multi-sensory room
• Music room
• Office and storage facilities
• Bereavement suite
• Larger children’s sitting room
• Training rooms/facilities
Wherever possible, facilities will be flexible and adaptable to enable the hospice to respond to anticipated future demands on the service.
Q: Which children and young people does Rainbows support?
A: Rainbows provides care to children and young people who have an incurable condition or a condition which means they are unlikely to live far into adulthood.
Many have a progressive, degenerative condition such as Muscular Dystrophy or Cystic Fibrosis. Some will have a severe neurological disability which makes them more susceptible to health complications which may cause unexpected deterioration. Examples of this include severe cerebral palsy or multiple disabilities following a brain or spinal cord injury. We also support children with a wide variety of other conditions including complex heart conditions, irreversible organ failure of the heart, liver or kidneys and progressive condition for which there is no treatment available such as Batten’s Disease or mucopolysaccharidoses.
Q: Who can refer a child?
A: Referrals are accepted from any source including the family themselves. All that is asked for is the parent’s permission to be given at the time of referral. Once a referral is received, the hospice will usually obtain more information about the child from hospital consultants and / or general practitioner etc. This is then reviewed by a panel of hospice staff including doctors, and if the child meets the hospice service criteria they will be offered whatever support and care is appropriate.
Q: How long can a child and family receive care for?
A: Rainbows offers care and support from the moment of diagnosis onwards. Children and families often build relationships for many years before their condition enters the final terminal stages. We also provide care to families and friends after the child has died through specialist bereavement support.
Q: Does anyone inspect the hospices to ensure they are safe and provide a high quality service?
A: Residential care environments such as Rainbows are registered and inspected by the Healthcare Commission in line with National Care Standards.
Q: What group does the term “young people” cover?
A: Defining this group is problematic. The ages of 13 and 24 have been taken as the lower and upper boundaries with the intention of covering adolescence and young adulthood. However, young people with cystic fibrosis, duchenne muscular dystrophy and juvenile Batten disease, for instance, increasingly are surviving beyond 25 though still dying young. It is also recognised that intellectual age may not coincide with chronological age.
Q: Do young people over 18 years of age use adult hospices?
A: Yes. Most young people over 18 who are dying and have not previously used a children’s/young person’s hospice would use an adult hospice for palliative care and end of life support. However, there are young people over 18 who have had life-limiting illness for all, or most, of their lives. These young people and their families have often used the services of a children’s hospice and may prefer to continue to receive care from these specialist units, where care delivery and staff are familiar to them and their illness and are used to caring for their complex needs.
Q: What is the average spread of ages that a children’s hospice will care for?
A: The spread of ages of the children supported by UK children’s hospices services:
Age range % of children supported
0-4 19.9%
5-11 39.3%
12-15 20.9%
16-17 9.7%
Transitional Care (18-30) 10.1%
[Source: Children’s Hospices UK, 2007]
Q: What are the average source of referrals?
A: The sources of referrals to UK children’s hospices are as follows:
Source of referral and Percentage of referrals from this source
Community Paediatric Nurse 25.1%
Social Worker 18.1%
Family member 13.5%
Consultant 12.4%
Clinical Nurse Specialist 4.6%
Community Palliative Care Teams 4.4%
Health Visitor 3.6%
GP 1.5%
Teacher 0.7%
Other voluntary organisation 0.6%
Other 15.3%
[Source: Children’s Hospices UK, 2007]
Q: What are the types of condition treated?
A: The conditions of the children supported by UK children’s hospices fall into the following four broad groups:
Diagnostic Group and Percentage of children supported with this type of condition Life-threatening conditions for which curative treatment may be feasible but can fail. When access to palliative care services may be necessary when treatment fails (Examples: cancer, irreversible organ failures of heart, liver, kidneys) 13.5%
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 (Examples: cystic fibrosis) 8.1%
Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years (Examples: Battens disease, mucopolysaccharidoses, muscular dystrophy) 35.7%
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 insult) 42.9%
[Source: Children’s Hospices UK, 2007]
Q: Can young people over 18 share the same facilities as children and young people under 18 and be in the hospice at the same time?
A: Most facilities can be shared, for example social facilities such as the dining room, computer room, hydrotherapy pool, therapy room etc. These social facilities may be used at different times for different age groups to ensure activities are age appropriate. Some facilities for young people over 18 have to be kept separate from young people under 18, these include sleeping and bathroom facilities.
The only exceptional circumstance for under 18 and over 18 year olds to be in the hospice at the same time at present would be in an emergency/end of life care situation.
