Anaphylaxis UK: February 2026

Name and type of organisation(s): Anaphylaxis UK, previously Anaphylaxis Campaign (registered charity no 1085527)  

Fundraising method: Digital – social media and platforms, Event fundraising  

Code themes examined: Misleading information, use of restricted funds, on- behalf of volunteer fundraising  

Code breach? Yes   

The complaint  

The Fundraising Regulator launched an investigation into Anaphylaxis UK following a complaint from a member of the public. The complainant told us that after their son Owen’s death in 2017 from anaphylaxis, with the charity’s support, the family raised funds for a memorial fund in their son’s name - the Owen Carey Memorial Fund. The family held several public fundraising events and made individual donations to the fund. The complainant said they believed the family would have input into how the fund would be used.

However, in 2022, the complainant and their family discovered that donations to their son’s memorial fund had not, as they believed, been held as restricted funds pending their input on their use; instead, the funds they helped raise had been used to support the charity’s overall objectives. The complainant raised their concerns with the charity's new Chief Executive (CEO) at the time and requested that the charity either reallocate the amount raised for the memorial fund (from its general funds) to a specific cause, agreed upon by both parties, or work with the family to support their campaign to change the law. 

The CEO acknowledged that, while they understood why the family might have believed the money had been set aside, this was not the case, and no funds appeared to be ring-fenced or restricted. The charity informed the complainant that it would be happy to recognise the family's work through its training materials and supporting video.  

The complainant brought their complaint to us because they were unhappy with the charity's response to their concerns. They told us that they believed the money donated to the memorial fund had not been used for the purpose for which it was given.

What happened?

We reviewed all available information from the period during which the fundraising occurred, including, but not limited to, correspondence exchanged between the parties, fundraising materials used by the family, and contemporaneous records supplied by the charity.

Since the fundraising took place, the charity has undergone a complete staff change; therefore, we were unable to speak directly with the fundraising team that supported the family. 

Our decision

Volunteer fundraisers  

We recognise that the charity may not have initially considered the complainant and their family to be "on behalf of" fundraisers, as they approached the charity independently and were not formally instructed. However, given the evolving relationship, the charity's oversight of the family's fundraising materials, and its knowledge of the family's activities, we consider it inaccurate to claim that the family acted independently.  

We concluded the family was acting as volunteer fundraisers "on behalf of" the charity, which made the charity responsible for ensuring their compliance with the code. We acknowledge that many charities often struggle to distinguish “in aid of” from “on behalf of” fundraisers, and we consider that the charity was likely unaware of its responsibilities, meaning the complainant was not properly informed before they began fundraising for the charity. On this basis, we consider that the charity breached the standard which is related to providing volunteers with the appropriate information and support.  

Treating donors fairly

We considered it important that, regardless of the complainant's relationship with the charity, they contacted it less than three weeks after their son’s death. When receiving donations from those recently bereaved, charities should recognise potential vulnerability. We expect charities to offer the same consideration to volunteer fundraisers who may be affected by the cause.

We considered whether the family had enough information to make an informed decision. The correspondence exchanged showed they understood they would influence the memorial fund's final use (in line with the charity’s objectives). Early exchanges revealed confusion about how the funds could be used, likely due to the charity’s evolving relationship and sensitivity regarding the family's loss.  

The code in effect at the time of the fundraising clearly stated that donations must be used in accordance with the conditions attached to the donation, which may arise from the donor’s stipulations or representations made by the charity as to the uses of the funds. The charity's communication with the family inadvertently introduced an undocumented condition (that they could have input) regarding the use of funds. On this basis, we found that the charity failed to provide sufficient information to enable donors to make an informed decision.  

The JustGiving campaign page, established and managed by the charity, references the memorial fund but does not specify that the funds raised are for a specific purpose. It was stated on the page that it was set up in Owen’s memory and that the family were “raising money for the Anaphylaxis Campaign and raising awareness of severe allergies, particularly in young adults." Although the page also details that the family aimed to raise awareness among young adults about carrying EpiPens, it lacked any specific details on how this would be achieved or what the family's role in the decision-making process would look like. The fundraising poster designed and signed off by the charity and used by the family on social media also references that the money raised was “intended to be aimed at the 18- 25 age group, specific work being as yet undecided.”

If the materials had not mentioned "young adults," the request would likely be seen as general fundraising. Charities should be aware of the implications of specifying how funds are used. Phrases such as "young adults" may unintentionally limit donors' understanding of how their contributions will be used. The charity's annual reports at the time show some engagement with young adults; however, it appears to have mainly focused on school-age children. Therefore, while some of the funds may have been used to raise awareness among young adults, it is difficult to determine the extent.

Based on the wording of the JustGiving campaign and the charity’s confirmation that the funds were allocated to further its charitable objectives, we consider that the implied restrictions set out in the JustGiving campaign and the fundraising poster (concerning raising awareness among young adults) were not adhered to. On this basis, we found that the charity did not use donations for the purpose they were given.  

Based on the fundraising communications we reviewed, we found that at the time of the fundraising, the charity genuinely intended to collaborate with the complainant and their family. Unfortunately, due to a complete change in leadership and the lack of documentation supporting this decision, the funds were used for other purposes. On this basis, we did not find that the charity breached the section of the code related to misleading communications.  

Code sections considered 

Code of Fundraising Practice, version 1.3   

• Standard 1.2 e) i) -  breach
• Standard 1.4 c)    -  breach
• Standard 2.2.12 a) - breach
• Standard 5.2 e) - breach
• Standard 5.2 h) -  no breach  

Our recommendations 

We understand the challenges this complaint has posed to the charity, especially in light of the changes in its senior leadership and strategic direction.  

The complainant has requested that the funds be recovered from the general fund and allocated to a project for which they can approve or, at the very least, have some input. However, we consider that the condition set by the charity regarding the involvement of the complainant and their family was unrealistic and potentially unachievable. This is because trustees ultimately have the final say on how funds should be utilised and retain the right to veto any suggestion made by a donor that they feel does not align with the charity's objectives or is not in the best interest of the charity.  

Based on our findings, we recommend that the charity undertake the following actions: 

1. Review the current interactions with "in aid of fundraisers" to ensure that fundraising staff can accurately categorise volunteers and provide appropriate information to those fundraising on their behalf. As part of this review, we recommend that it amend its volunteer policy to emphasise the importance of "on behalf of” fundraisers acting in accordance with the code. 
    
2. Assess and improve the communication strategies it uses with donors who may be in potentially vulnerable circumstances. It is critical to understand that even when information is communicated clearly, both donors and volunteers can misinterpret verbal messages. Therefore, it is important to maintain accurate records of meetings and decisions related to the use of funds. 
    
3. The charity trustees review whether accumulated funds raised via the JustGiving campaign were spent on activities aimed at raising awareness among young adults. If the funds were not used for this purpose, the trustees should seek legal advice on whether they can refund donations made via the platform, in accordance with charity law. To support this decision, the charity trustees should also review the Charity Commission’s guidance on ‘Accepting, refusing and returning donations to your charity’. 
    
4. Based on our findings and the expectations established with the complainant, the charity’s trustees should consider whether it is appropriate to involve the family in deciding on a project that aligns with its current charitable objects. Alternatively, if legal advice confirms that it is possible, the charity may consider refunding the donations. Additionally, it is important to ensure that all decisions, including whether or not to issue a refund, are properly documented and that the Charity Commission is consulted if appropriate. To assist in its consideration of this recommendation, we suggest the charity’s senior leadership team and trustees review the regulator's new support guidance, Documenting your fundraising decisions.   

Outcome 

Before we completed our investigation, the charity appointed a new CEO who advised that, although the charity is not in a position to refund or reallocate money, they would be happy to meet with the family to explore the possibility of reaching a compromise.   

Note: Published case summaries are usually anonymised however, in this case we have included names at the request of the Carey family.