Frequently asked questions about eligibility for a Family Respite Break at the Bluebells
Click on a question to reveal the answer.
1. Who can apply for a family respite break at The Bluebells? ↓
Sebastian’s Action Trust accepts applications for families of babies, children and young people up to their 19th birthday, who have life-limiting or life-threatening conditions. Referrals will be considered for families from across the UK.
2. What is meant by life-limiting or life-threatening? ↓
To meet our criteria the child’s condition(s) must fall within the NICE guidelines
These fall into four main groups and are described below:
Group 1 – Life threatening conditions for which curative treatment may be feasible but can fail. (e.g cancer, irreversible organ failures of heart , liver, kidneys.)
Group 2 – Conditions where premature death is inevitable. (e.g. cystic fibrosis)
Group 3 – Progressive conditions without curative treatment options. (e.g. Batten disease, mucopolysaccaridoses, muscular dystrophy.)
Group 4 – Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. (e.g. cerebral palsy, multiple disabilities such as brain or spinal cord insult.)
3. When allocating holidays, is there a set of criteria against which families are prioritised? ↓
In order to ensure families are allocated breaks on a needs basis, priority will be given to families where a child or young person falls within the following:
- Immediate threat to life
- Life threatened where premature death is inevitable
- Ongoing complex or palliative care
4. Who can make the initial application? ↓
We are happy to take applications from families directly, members of their healthcare team or other professional organisations acting in the best interests of the family.
Once the application form has been completed and received at The Bluebells we aim to send an acknowledgement of receipt within ten working days.
For those wishing to discuss a possible referral prior to completing the application form please call Lauren Harris at The Bluebells on 01256 391854.
5. Can a family request a specific date for a break at The Bluebells? ↓
Preferred dates can be requested on the application form but we reserve the right to offer breaks as availability and eligibility dictate- we simply cannot accommodate every request for the school holiday periods, for example. We aim to work with families to ensure breaks are provided at times that fit with each family’s commitments but there is the need for a flexible approach at times.
6. If my family cannot attend for the time offered can I rebook? ↓
If the cancellation occurs because of a change in the child’s condition we will try to offer an alternative date within the next 12 months.
7. How long are breaks at The Bluebells? ↓
Generally speaking breaks are offered from a Friday (10am onwards) to a Tuesday (departure by 1pm).
We also offer crisis breaks to families from a Tuesday (after 2pm) until Friday departure by 10am) where there is a desperate need for a break owing to a rapid deterioration in a child’s condition, recent discharge from hospital or other critical, unforeseen circumstances.
8. Is there a charge for a Bluebells break? ↓
It costs the Trust in the region of £3000 per week to fund The Bluebells alone, which is only part of the service provision we offer to families of seriously-ill children. As a charity that does not receive any statutory funding we work tirelessly to raise this sum, recognizing that many families are financially disadvantaged when struggling to cope with the enormity of their child’s condition.
We ask for a family contribution of £100 towards each respite break, which is only a fraction of the true cost borne by Sebastian’s Action Trust. We do, however, understand that for some this may be difficult to achieve and where necessary we will work with families to agree a reduced sum. We would never prevent a family from experiencing a break at The Bluebells because of an inability to provide a contribution.
There is no contribution request for midweek crisis breaks at The Bluebells.
9. Can bereaved families apply for a break at The Bluebells? ↓
We have had many families stay at the Bluebells after the death of their child. We try to reserve weeks so that Butterfly Families (The term we use for those who are bereaved) can use our house at times when other families are not staying, to ensure appropriate sensitivity to all concerned.
10. If I want to apply, what do I do next? ↓
Please complete the Bluebells’ application form, ensuring full disclosure of the child’s condition and details of a relevant health professional who can provide verification of the information given.