The Butterfly Fund Q&A

The Butterfly Fund has always been dependent on income received in the form of charitable donations.  At present, we have funds that are restricted to particular geographical areas.

We know how valued this Fund has been for those families whose child dies of a life-limiting or life-threatening condition.  We remain committed to the ethos of the Butterfly Fund and so will continue to seek funding with the aim of re-introducing the fund to all UK families in the near future.  Updates of the Fund’s status will be communicated in our e-bulletin and on our website.

The Butterfly Fund from Together for Short Lives provides a one-off cash grant of £300 made following the death of a child with a life-limiting or life-threatening condition. Applications to the Butterfly Fund are not means-tested.

The fund is open to families whose child was identified as having a life limiting/life threatening condition (as defined in Together for Short Lives’ 4 categories) and has died before their nineteenth birthday. This includes neonates where a life-limiting diagnosis had been made and palliative care had been provided prior to the death of the baby.  To discuss if a case meets the fund criteria, please email butterfly.fund@togetherforshortlives.org.uk.

At the moment, applications are only accepted by authorised referral agents who are involved in the delivery of palliative care to the child before/at/after the child’s death.

If you work in one of the listed areas and are keen to support a family that meets the criteria, please email butterfly.fund@togetherforshortlives.org.uk.

Applications to the Butterfly Fund must be submitted within 8 weeks of the child’s death.

Families who are applying for for statutory funding to support funeral costs should apply to these first, so that the Butterfly grant doesn’t effect those applications. Being in receipt of other grants will not affect applications to the Butterfly Fund. If you would like more information about what statutory funds are available, please contact our helpline on 0808 8088 100 or using the Live Chat button at the bottom of the page.

Applications should be made on behalf of a parent or carer who had parental responsibility for the child at the time of their death.  They should include details of the bank account to where the payment will be made – this may be a joint or an individual account.  If you are not sure who the beneficiary should be, please email butterfly.fund@togetherforshortlives.org.uk.

We will need to have the contact details of both the recipient (parent) and professional supporting the application. We also ask for the child’s date of birth, date of death and their primary diagnosis.

To make the payment we need the name on the account, sort code, account number and the address at which the account is registered.

For monitoring purposes, we ask the family’s intended use for the Fund, the ethnicity of the child and consent for us to contact them about the payment. A professional must verify that the stated details of the child’s age and diagnosis are accurate.

£300 will be made by BACS payment to the account detailed on the application form. The named person must have parental responsibility for the child.

BACS payments are made on or around the 15th and 31st of each month so families should receive funds within three weeks of the application being approved.

Personal information will be kept in line with our privacy policy. Bank details will only be kept for payment purposes and to satisfy auditor requirements. Information from applications (geography, child’s condition, child’s age at death and intended use of grant) will be kept anonymously but used to inform funder reports and evaluation.

Families will need to provide all information required for the professional to complete all fields on the application form, including an email address. Families do not need to keep receipts on how/when the money was spent.

The family will be sent an email to notify them when payment has been made. This email will include details of how to access support from our Family Support Hub.

We want to develop a picture of how families chose to spend the money. We are also keen to learn of what, if any, impact, the £300 made to recipients. This information will inform the future phases of the Butterfly Fund’s roll out and attract ongoing funding.

For this reason, Together for Short Lives will contact recipients by email and ask them to complete a short survey to capture:

• How did they spend the money?
• What difference did the grant make to their family?
• Would the family be willing to speak further with Together for Short Lives to share quotes and case studies to help grow the Fund?

No, at this time, all applications must be submitted by an authorised referral agent professional involved in the delivery of palliative care to the child.

At the moment, applications are only accepted by authorised referral agents who are involved in the delivery of palliative care to the child before/at/after the child’s death.

If you work in one of the listed areas and are keen to support a family that meets the criteria, please email butterfly.fund@togetherforshortlives.org.uk.

At the moment, applications are only accepted by authorised referral agents who are involved in the delivery of palliative care to the child before/at/after the child’s death.

If you work in one of the listed areas and are keen to support a family that meets the criteria, please email butterfly.fund@togetherforshortlives.org.uk.

At the moment, applications are only accepted by authorised referral agents who are involved in the delivery of palliative care to the child before/at/after the child’s death.

If you work in one of the listed areas and are keen to support a family that meets the criteria, please email butterfly.fund@togetherforshortlives.org.uk.