Acorns provides a network of specialist palliative nursing care and support to babies, children and young people aged 0 – 18 years who have life limiting or life threatening conditions.
Eligibility for children is based on the four categories of life limiting or life threatening conditions as established by Together for Short Lives[i]:
Please do not use the phrase ‘terminally ill’. ‘Not expected to reach adulthood’ is preferred.
A holistic service meets the needs of both the children and young people and their families, including the bereaved. This includes short break provision; emergency and end of life care; therapeutic and psychosocial support; sibling services; and family support.
Acorns serve the areas of Birmingham, Coventry and Warwickshire, Walsall, Sandwell, Dudley, Wolverhampton, Worcestershire, Herefordshire, Gloucestershire, Staffordshire and Shropshire.
In the past year[ii], Acorns supported 704 children and 940 families across the organisation, including those who have been bereaved.
In the past year[iii], Acorns has supported:
In the past year[iv], Acorns has supported 1,557 individual family members, including children, brothers and sisters, parents, carers and grandparents.
On average, every month, four of the children Acorns cares for will die.[v]
42% of the children and families at Acorns are from ethnic minorities.
Approx. 3% of the children Acorns cares for have cancer.
The prevalence of life limiting conditions amongst children and young people in our region was calculated in a recent study led by Professor Lorna Fraser at the University of York[vi]. The research showed that:
The data suggests that much of the increase in prevalence may be due to improvements in life expectancy. The general trend is towards there being more children living longer, with more complex care needs.
Working with the family, Acorns undertakes a comprehensive holistic assessment, from which we are able to determine the outcomes the family needs to achieve for them and their child. Support is then delivered in response to the family’s requirements.
Care is tailored for each individual child which includes all their clinical, emotional, cultural, religious and spiritual needs. Acorns care can be provided in the hospice, a family’s home or elsewhere in the community.
Acorns has three children’s hospices:
The hospices are purpose-built with 10 specially decorated bedrooms designed to cater for children and young people from birth to 18 years of age. They are designed to be a home-from-home environment to help children enjoy their stay and make the most of every day.
On-site hospice facilities include hydrotherapy pools and spas, multisensory rooms, complementary therapy rooms, and play and activity areas with up-to-date IT equipment and games.
The hospices have landscaped gardens, designed to provide a safe and secure environment for children and families to have fun, reflect and enjoy the outdoors.
Designated wings for older children and teenagers ensure privacy and a managed level of independence.
Separate on-site accommodation for families allows them to stay with their child if they wish.
The hospices have ‘special bedrooms’ in a separate area within the building where children can stay after they have died. The ‘special bedroom’ can be personalised by families and are a place where they can pay final respects and make precious memories before their child’s funeral.
On acceptance to Acorns, every family receives an assessment of their needs from the Acorns Family Services team. This will be undertaken by a professional who has a health or social care background. A Family Services Team worker will work with the family to determine the services that will best meet their needs at the current time and agree a plan of care and support that may include: psychosocial support, advocacy, short breaks in the hospice or at home, sibling support and a range of support groups for all members of the family. End-of-life care and bereavement support will be available whenever is it needed and all families will have access to emergency support via the hospices, 24 hours a day.
In the past year[x], the Acorns Family Services team provided 22,091 instances of vital
emotional and practical support to family members, including siblings: face-to-face, via
video or over the phone.
In the past year, Acorns accepted 99 children referred to our services.
Each hospice has a team comprising:
Care is provided during a hospice stay (whether this is a planned short break, emergency or end of life care) including:
Sibling Workers provide support to siblings through focused groups, individual therapeutic based sessions and bespoke programmes, according to assessed need. In the past year[xiii], 237 siblings were supported at Acorns.
Acorns runs a programme of specialist support groups for:
These support groups bring together those in similar situations, reducing isolation and helping develop resilience, self-esteem and a sense of identity.
Acorns is an independent charity managed by an appointed Chief Executive and a senior management team who are accountable to a board of trustees.
A number of formal groups including parents, carers and young people provide regular feedback and input into how services are delivered and can be improved to better meet needs.
Care services are regulated and audited by the Care Quality Commission (CQC): www.cqc.org.uk
Acorns is registered with the Fundraising Regulator (FR) – the regulator for fundraising in the UK: www.fundraisingregulator.org.uk
Acorns is a member of Together for Short Lives– The UK voice for children and young people who are not expected to reach adulthood and their families: www.togetherforshortlives.org.uk
Acorns is a member of Hospice UK – the national charity for hospice care: www.hospiceuk.org
It costs around £10 million a year to run our care services in the hospices and community, providing care for the child and support for families.
It costs around £27,000 per day to run Acorns care services.[xiv]
It costs around £7,000 a day to run care services within one hospice.[xv]
It costs around £975 to provide a nurse-led 24 hour palliative care break for a child in a hospice.
Acorns relies heavily on the community to fund the majority of our activities. In the past year [xvi], the local community provided 60% or £6 million of the money needed to run our care.
Income from Clinical Commissioning Groups (CCGs) and other statutory bodies represents a contribution of around 35% towards the total cost of our care services.
Our last set of audited accounts[xvii] show:
Acorns participate in two lotteries: TLC in Birmingham tlclottery.co.uk and the Hospices Lottery in Worcestershire.
Acorns is part of Childlife, a fundraising partnership between four charities working with children, young people and their families throughout the UK: www.childlife.org.uk.
Acorns employs around 360 staff in its three hospices, network of shops and head office[xix].
Figures last updated September 2021
[i] Eligibility criteria (as outlined by Together for Short Lives)
Life threatening conditions for which curative treatment may be feasible but can fail. Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.
Examples: Cancer, irreversible organ failures of heart, liver, kidney.
Conditions where premature death is inevitable. There may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.
Examples: Cystic fibrosis, Duchenne muscular dystrophy
Progressive conditions without curative treatment options. Treatment is exclusively palliative and may commonly extend over many years.
Examples: Batten disease, mucopolysaccharidoses
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 injury, complex health care needs, high risk of an unpredictable life-threatening event of episode.
[ii] From 1 April 2020 to 31 March 2021
[iii] From 1 April 2020 to 31 March 2021
[iv] From 1 April 2020 to 31 March 2021
[v] In the year to 31 March 2021, 49 children passed away
[vi] Fraser L. K. et al (2020) Make Every Child Count: Estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom
[vii] In 2017/18 there were an estimated 11,079 children aged 0-19 with a life limiting condition in the West Midlands and Gloucestershire. This gives a prevalence per 10,000 of 68.4. This is slightly higher than the prevalence of 66.4 for England as a whole.
[viii] There were an estimated 4,154 more children in area with a life limiting condition in 2017/18 than there were in 2008/9. The equivalence measure for England is 46 percent.
[ix] It is estimated that by 2030, prevalence in the West Midlands (excluding Gloucestershire) will have increased to between 68.9 and 93.8 per 10,000. This amounts to between 891 and 4,384 more children with life limiting conditions in the region than there was estimated to be in 2017/18.
[x] From 1 April 2020 to 31 March 2021
[xi] From 1 April 2020 to 31 March 2021
[xii] This was a reduced service operating from October 2020 to March 2021. The service was suspended for the first part of the year due to Covid.
[xiii] From 1 April 2020 to 31 March 2021
[xiv] It costs around £9,090 per day, per hospice to run both in-house and community services. £27,000 per day is the total for the three hospices as a whole.
[xv] It costs on average £6,820 per day, per hospice to run Acorns in-house care and support services.
[xvi] In the year to 31 March 2021
[xvii] Financial figures are based on 2020/21 accounts as reported online at www.acorns.org.uk/publications
[xviii] In 2020 to 2021
[xix] As of 31 March 2021
[xx] As of 31 March 2021
[xxi] Volunteers may cross over different areas of the organisation.