Together for Short Lives
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The Butterfly Fund Q&A

When a child dies from a life-limiting or life-threatening condition many families are plunged into financial difficulty. Our Butterfly Fund provides a one off grant of £300 to help ease the burden.

The following Q&A gives more detail about the fund.

What is the Butterfly Fund?

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.

Who is it for?

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 palliative care had been provided prior to the death of the baby.  To discuss if a case meets the fund criteria, please email

How do you make an application?

Applications should be submitted by a member of the care team who supported the family at the time of the child’s death or are well known to the family. If you are a professional or a parent carer of a child who has recently died and would like to apply to the Butterfly Fund, please submit an enquiry through the form on this page.  We will contact you to discuss next steps.

When should I make an application?

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.

To whom is the Butterfly Fund payment paid?

Applications should be from 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 there payment will be made – this may be a joint or an individual account.  In cases where parents are estranged, it may be possible to split the fund between two accounts.  In these, or similar, instances, please complete a web form and we will respond on a case by case basis.

What information is needed for the application?

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.

How is the money paid?

£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 the 15th and 31st of each month so families should receive funds within three weeks of the application being approved.

How will you keep the data you collect?

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.

What information do families need to share with Together for Short Lives?

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. Families will also be told to expect a further email after a couple of months.

Will you contact grant recipients in future, after they've received a grant?

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 a couple of months following payment 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?

How long is the fund open for?

Our intention is not to set an end date for the Butterfly Fund. However, should available funds drop too low we may need to ‘close’ access to the fund until further funding is secured. We will update our website accordingly should we have to temporarily close the fund.