Information for Professionals
James Hopkins Trust is a charity registered with and regulated by the Care Quality Commission & Ofsted.
We welcome referrals to James Hopkins Trust for Gloucestershire’s children under 6 who are life-limited or life-threatened. We offer day and night care in our purpose-built centre, Kites Corner, based on the outskirts of Gloucester City. Depending on the severity of the child’s needs we may be able to offer one to one respite in the family home.
Referrals are accepted from anyone but It’s important that referrals are discussed with the family before submission. We recognise it can be hard to know the right time to refer so we welcome an informal discussion enabling you to consider whether our services can support the family you are working with. Families often feedback that they wish they had been referred earlier in their child’s journey.
Applications for a referral to James Hopkins Trust can be found here.
The child/baby need to be diagnosed with a life limiting or life-threatening condition and have not yet reached their 6th birthday. Daytime respite generally finishes once the child reaches school age.
Our criteria for services
James Hopkins Trust is a palliative care respite service for babies and young children with life limiting and life-threatening conditions. In line with other current palliative care services, we have reviewed our referral criteria in line with Together for Short Lives as there is a rapidly growing number of children living with life-limiting and life-threatening conditions across the UK. We would expect that all children eligible would benefit from some elements of a palliative care approach and knowing about the support that is available from children’s palliative care services.
Categories of life-limiting and life-threatening conditions
There are a wide range of life-limiting and life-threatening conditions affecting children and young people, which can be categorised broadly into four groups. Diagnosis is only part of the process of identifying children who need support from palliative care services: the spectrum and severity of the disease as well as the needs/wishes of and impact on the child and family also need to be considered. The four categories can be defined as follows:
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
Children can have complex health care needs, a high risk of an unpredictable life-threatening event or episode, health complications and an increased likelihood of premature death.
This guidance is also used A Tool For Assessing ACT Category For Children for our assessment.
Usually, referrals are planned and carefully considered by the Nursing Management Team, but sometimes you may need to make an emergency referral, if this is the case it is best to phone and discuss this with the Nursing Management Team so we can respond as quickly as possible.
We will always visit the family at home or in hospital prior to them being accepted for respite.
We will always write to you as the referrer to let you know our decision.
Getting our timing right
Sometimes when we are approached about a child being referred, after we’ve assessed the situation, we may decide that it’s not the right time for the child to be accepted. Obviously, this can be distressing, but a decision to decline is never taken lightly and is usually made because at that point in the child’s disease trajectory there’s no clear evidence of a nursing or palliative care need.
Whenever we decline a referral, we always explain our reasons fully and discuss them in detail with the original referrer and family.
Every family is different, and we work hard to ensure the right level of care and support is offered.
