Our generous supporters make our work possible and are central to us achieving our mission, which is to provide help for today and a cure for tomorrow.

This policy relates to all the relationships between TSA and our supporters, regardless of the financial benefits, and extends to include any third parties we may work with who interact with supporters. Third party agencies working on behalf of TSA are considered to be an extension of us and are therefore expected to align with our values and treat all our supporters with the integrity and respect they deserve.

TSA’s commitment

All fundraisers (both at TSA and third-party agency partners) should be alert to indicators of potential vulnerabilities in every interaction they have with supporters. We should always abide by our values of respect, integrity and accountability, and be open, honest and transparent with all our supporters to ensure they fully understand what their support involves. We will always strive to provide them with the best possible experience in their relationship with TSA, and recognise that our supporters are key to us carrying out our work.

Our commitment to our supporters and as a member of the Fundraising Regulator, means we will adhere to the Code of Fundraising Practice Requirements (1.2 e):

Fundraisers MUST take all reasonable steps to treat a donor fairly, enabling them to make an informed decision about any donation. This MUST include taking into account the needs of any potential donor who may be in a vulnerable circumstance or require additional care and support to make an informed decision.

1. Fundraisers MUST NOT exploit the credulity, lack of knowledge, apparent need for care and support or vulnerable circumstance of any donor at any point in time.
2. If a fundraiser knows or has reasonable grounds for believing that an individual lacks capacity to make a decision to donate, a donation MUST NOT be taken.

• A donation given by someone who lacked capacity at the time of donating MUST* be returned. (this is a legal requirement defined by law).

What is vulnerability?

The TSA recognises that vulnerability is complex and changeable and may, at some stage in life, affect any individual. If an individual lacks the mental capacity to make an informed decision, then they are in a vulnerable situation. The Mental Capacity Act 2005 states that this can be defined as an impairment of the functioning of the brain leaving that person unable to make a decision, for example dementia.

The Fundraising Regulator guidance Treating Donors Fairly states ‘an individual does not have to have any medical, physical, or mental condition to be in a ‘vulnerable circumstance’. Something could have happened in their life that makes things difficult for them, meaning that it is harder for them to make decisions, or they are experiencing particular stress or anxiety. The TSA therefore understands that vulnerability can be a temporary situation defined by significant life events, such as times of extreme stress and/or anxiety.

It is important for all staff and representatives of TSA to remember that there is a wide range of potential vulnerabilities, which can affect different people in different ways. It is important to consider each supporters circumstance individually and refrain from making judgements.

The TSA also recognises that there are times where an individual may have capacity to make a decision, but circumstances mean they may require extra support in making that decision e.g. if someone is bereaved.

Identifying someone in a potentially vulnerable situation

Examples of situations which could lead the TSA to believe that an individual does not have the mental capacity to make an informed decision, is in a vulnerable circumstance, or needs additional support could include:

• Physical and mental medical conditions
• Disability
• Learning difficulties
• Times of stress or anxiety (e.g. bereavement, redundancy)
• Financial vulnerability (where a gift from a donor may impact on their ability to sufficiently care for themselves or leave them in financial hardship)
• English not being the donor’s first language
• Influence of alcohol or drugs.

Due to its nature, it is not possible to provide a comprehensive set of indicators, so these serve as guidance and fundraisers are advised to always remain alert to the potential for vulnerability.

If a fundraiser has grounds to believe a supporter is in a vulnerable situation, or lacks the capacity to make an informed decision, then the interaction with the supporter should be ended in a polite manner protecting their dignity.

When would TSA not accept a donation

This policy only refers to situations where the supporter may be in a vulnerable circumstance, and no other situations where refusing or refunding a donation may need to be considered, for example, if a supporter has changed their mind.

When TSA has reasonable grounds to believe that a supporter lacks the mental capacity to make an informed decision, including temporary circumstances, about their giving we should not accept the donation.

When TSA has reasonable grounds to believe an individual has the capacity to make a decision, but might need additional support in doing so, TSA will not accept the donation at that moment. It may be considered appropriate to send the supporter a form and advise them to discuss their donation with friends and family before returning it.

When TSA should return a donation

If a donation has been made and it is found that at the time of donating the supporter lacked the capacity to make an informed decision about their giving, the donation is deemed invalid and should be returned.

We’re here to help If we can be of any assistance, or if you would like more information about this policy, please contact our team on 0300 222 5737, or email us at admin@tuberous-scelrosis.org or write to Tuberous Sclerosis Association, c/o Nightingale House, 46-48 East Street, Epsom, Surrey, KT17 1HQ.

Keeping our Vulnerable Supporters Policy up to date

We regularly review and update this policy to make sure it is accurate and simple to understand. This policy was last updated in October 2019 . Registered address amended October 2021.