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 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.

How do you make an application?

Applications should be submitted by a member of the care team involved in the delivery of palliative care to the child before/at/after the child’s death.

If you don’t already have access to an application form, please complete the form here and an application form will be sent to you for completion with the family.

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 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.

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 or around 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?

Are parents able to apply to the fund directly?

No, all applications must be submitted by a professional involved in the delivery of palliative care to the child.

I am not a member of a children’s palliative care team, am I able to submit an application on behalf of a family?

We acknowledge that a range of professionals may support a child with a life-limiting or life-threatening diagnosis as defined in Together for Short Lives’ 4 categories:

Category 1:

Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.

Category 2:

Conditions where premature death is inevitable, these may involve long periods of intensive disease-directed treatment aimed at prolonging life and allowing participation in normal activities. Children and young people in this category may be significantly disabled but have long periods of relatively good health.

Category 3:

Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.

Category 4:

Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. Palliative care may be required at any stage and there may be unpredictable and periodic episodes of care.

To ensure that the Butterfly Fund reaches the intended beneficiaries, we ask that applications submitted by those who are not a member of a palliative care team/setting (such as a children’s hospice or children’s palliative care community or hospital team) include contact details of a palliative care professional known to be involved in the care of the child.

I am a member of a bereavement team at a children’s hospital, can I submit an application on behalf of a family?

Yes – if the child had received a life-limiting diagnosis and palliative care had been provided before their death.  Unfortunately, we are not able to accept applications in cases where the diagnosis was unknown and/or the child died unexpectedly.

I work at a hospice. Can I apply on behalf of a family who used the ‘cool room’, but no other hospice service?

A member of the palliative care team is able to authorise the application if the child had been diagnosed with a life-limiting condition before their death ie the application must meet the criteria of the Butterfly Fund.