Together for Short Lives
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The Butterfly Fund Q&A

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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

How do you make a referral?

Referrals to the Fund should be made on behalf of a family by a member of the care/support team involved in the delivery of palliative care to the child before/at/after the child’s death.

The referral form is available on our website.  If insufficient information is provided, we will contact the referrer for further details.

If the referral meets the criteria, the family will be sent a unique code and a link to a secure form by email to share their bank details.

When should I make a referral?

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

To whom is the Butterfly Fund payment paid?

Payments are paid to the account nominated by the parent or carer who had parental responsibility for the child at the time of their death.

What information is needed for the referral?

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

What information is needed for payment?

We will email the family with a unique code and a link to a secure form.  To make the payment we need the name on the account, sort code, account number and the address at which the account is registered.

If there are any problems verifying the details provided, our finance team will liaise directly with the family.

Payment details are kept in accordance with our privacy policy.

How is the money paid?

£300 will be made by BACS payment to the account detailed on the bank details 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 and families should receive funds within eight 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 and ethnicity) will be kept anonymously but used to inform funder reports and evaluation.

How will you contact families?

We will use the family’s email provided on the referral form to seek bank details from the family.

The family will be sent an email to notify them when payment has been made within 8 weeks. This email will include details of how to access support from our Family Support Hub and a request for them to complete an optional 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, referrals must be made by a professional involved in the delivery of palliative care to the child.

I have previously used an MS Word application form. Can I still use this?

No, all referrals must be made through our webpage.  If you have any problems in doing this, please email

Why have you changed the application process?

The Butterfly Fund is dependent on charitable donations.  When funds have been used, we will be able to close the Fund by updating the website.  The fund will be reopened once sufficient funds have been secured.

To minimise the need to share personal details and remain GDPR compliant, we have split the single process into two – a referral (professional) and then payment (family).

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 referrals 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 details of how the family are known to them (e.g. family support worker from a children’s palliative care charity)

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.