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Memorial trusts: Power of a Name

By Indira Das-Gupta, Third Sector, 24 January 2007

A charity set up in someone's name, usually as a memorial, can be a powerful force for good. But it can also cause conflicts and bring media pressure.

All too often, the tragic news of yet another victim of crime or fatal illness hits the headlines, throwing family members into the spotlight.

Such deaths are nothing new, but bereaved parents or partners often seek to deal with the aftermath nowadays by setting up memorial charities such as those named after Stephen Lawrence, Jonathan Zito, Lucie Blackman, Anthony Nolan, Damilola Taylor and - most recently - Tom ap Rhys Price.

Why do they do it? Ann Viney, chief executive of Cruse Bereavement Care, says that when parents set up a charity in the name of a deceased child, it often addresses the problem that led to the death.

"For example, the charity might call for more research into a particular medical condition or be about crime prevention or education," she says.

"Stephen Lawrence's parents set up a charity to help young people fulfil Stephen's dream of becoming an architect. It's a very natural desire to do something, to have some sort of control over the mission and change things for the better."

Viney says some of these charities can be amazingly effective and a powerful force for change. For instance, the Zito Trust, set up by Jayne Zito after her husband Jonathan was murdered by a mental health patient who hadn't taken his medication, campaigns for better mental health treatment.

"However, what some families might not realise is how much administration is required in setting up a charity, and that a lot of their time will be taken up by bureaucracy," Viney says. "That's why it might make more sense for them to work with an existing charity that can handle that side of things."

Some of these charities can attract a degree of media attention that many bigger voluntary sector organisations can only dream of.

But not all publicity is good publicity, as Lucie Blackman's father, Tim, found out this year. His decision to accept a 'condolence' payment of £450,000 from a friend of Joji Obara, the man on trial for his daughter's murder, stirred a media storm. Lucie's mother, Jane Steare, regarded the decision to accept the payment as an "utter betrayal", even though it was widely reported that part of the payment will go to the Lucie Blackman Trust.

The Suzy Lamplugh Trust is another memorial charity that often attracts headlines. It celebrated its 20th anniversary in 2006, which makes it one of the oldest charities set up by parents in memory of their child.

Julie Bentley, chief executive of the trust, says: "We got a lot of media attention in the early days, and we still have a high profile for a small organisation. But the name has also been a hindrance. People aren't sure what we do, and because it's a girl's name it can pose a challenge when we are trying to work with young men.

"We thought about dropping the 'Suzy', but felt it would be wrong to change the name at this time because we knew there would be renewed media interest 20 years after her death.We did, however, rebrand to clarify what we do and to show that our emphasis has changed. We used to be very much about the safety of women in the workplace because Suzy disappeared while at work, but our range is much broader now."

Although it is understandable for parents to want something good to come of a child's death, why do the Lamplughs not simply ask sympathetic members of the public to donate to existing charities?

Dealing with loss

"Suzy's parents, Paul and Diana Lamplugh, set up a charity because people kept sending them money and they felt under pressure to do something," explains Bentley. "When they did it, it was still unusual, but now it seems to have become quite common. People see that there's a recipe to follow that will help them deal with tragedy. I think setting up a charity can also delay the grieving process."

Karen Ross and her husband Sean set up Rosie's Helping Hands in memory of their 16-year-old daughter, who was stabbed to death in Birmingham in 2001. She supports this theory, saying: "Having the charity definitely made it easier to deal with Rosie's death. It gave us something else, something positive to think about. I do sometimes think it might be easier to move on if it wasn't there. But I don't know if I would want someone else to run it - it's like my baby.

"The local press, which has been very supportive, wants to speak only to us. We once had a volunteer helping with press enquiries, but the reporters wanted quotes from us."

Nevertheless, Ross believes that parents should think carefully before setting up a charity. She says: "Initially, we set up a memorial fund to raise money for Birmingham City Hospital's A&E department, where Rosie was cared for before she died. At the funeral, we asked for donations to go there instead of flowers. The response was tremendous.

"Our solicitor advised us how to go about it and we set up what was essentially a disaster fund. But after 18 months we knew we had to choose between becoming a proper charity and closing the fund down.

"People in the area kept saying we should keep the work going, and we knew that was what Rosie would have wanted. Our solicitor helped us apply for charitable status, but we weren't really prepared for the amount of paperwork and administration. I was still working three days a week, as well as running the charity. It became too much, so I eventually asked the trustees if I could become a part-time employee of the charity.

"I would advise people in the same position thinking about setting up a charity to give it a go, but to be prepared for it to take over their lives."

Should the Rosses eventually decide that they want to hand over the running of the charity, their successor will face a difficult challenge, according to Bentley.

"It's never easy to take over from founders, especially when there's such a strong emotional connection," she says.

"Suzy's father is still on the board of trustees, and when I decided to remove Suzy's picture from publicity material it created some tension.

But he respects that I'm the chief executive and that I have the best interests of the charity at heart."

In the name of the founder

As well as charities established in someone's memory, there are those founded by individuals in their own names. These face a unique set of challenges: as the charity grows, the founder must inevitably delegate at least some of the decision-making, which often leads to clashes.

Sue Ryder set up the Sue Ryder Foundation, now Sue Ryder Care, in 1953.

She became so set against the direction it was taking that in 2000 she set up the rival Bouverie Foundation. She reportedly accused the charity's trustees of hijacking the organisation and locking her out of its offices.

Steve Taylor, director of marketing and communications at Sue Ryder Care, says: "There's always an issue of 'founder syndrome'. As a charity grows and starts to behave more like a business, it can be particularly hard for a founder.

"Sue Ryder was reluctant to see the charity develop in the way that the board and the senior management wanted. Supporters who had met Sue and associated the charity with her felt at odds with the idea of the charity as a business. We had to work hard to reassure them that modernising was right."

The Roy Castle Lung Cancer Foundation also had a well-documented difference of opinion with the entertainer's widow.

Mike Unger, chief executive of the foundation, explains: "The charity was originally called the Lung Cancer Fund. Following Roy's death it was renamed the Roy Castle Cause for Hope Foundation (Lung Cancer Fund) in recognition of all the work he had done for the charity. Later, it adopted its current name.

"Silvia Ingham, a former chief executive, left, feeling she had been unfairly treated. Roy's widow, Fiona, took her side, and about four years ago said she wanted us to stop using his name. She actually had no legal right in the matter, although you could argue that she had a moral right. She had never been a trustee and, even if she had, the board of trustees would have had to vote on the issue, so she would have been outnumbered.

"We looked into it very carefully and commissioned some market research, which showed clearly that we had a strong brand, dependent on Roy Castle's name. Even among younger generations and people living abroad who did not know who he was, the name worked well. Our name humanises our work and makes it more personal. Although we said no to Fiona's request, it wasn't a flippant refusal. We kept her up to date, and let her know when we commissioned and published the research. In fact, we are now very much on speaking terms and it's no longer an issue."

When it emerged in August that Leonard Cheshire was considering changing its name, it caused such alarm that the charity was forced to issue a statement. Judith Barnard, head of communications at the charity, says: "At the end of 2004 we set out a new 10-year plan to clarify our mission, and we are consulting ahead of our relaunch next year.

"We are considering improvements to our name, because it doesn't say anything about disability. We have not said we are dropping our name, but we are considering ways to enhance it and communicate what we do in a better way.

"Part of the problem is that name recognition is very low among young people. Only one in five people under 35 has heard of us, whereas 80 per cent of over-65s know who we are.

"It's a crowded marketplace. We have found that when we pitch for charity-of-the-year partnerships we don't do so well if it is decided by employees' votes, because people are not sure what we do."

Nevertheless, none of the charities Third Sector spoke to would consider completely changing its name. Nick Partridge, chief executive of the Terrence Higgins Trust, says: "Our name has been a great help because it has humanised a fatal illness that was initially viewed with fear and surrounded by prejudice.

"Our 2006 public awareness poll showed that 51 per cent of people had heard of the Terrence Higgins Trust and 70 per cent of those understood what the charity does. So we would never consider changing the name. It has become a well-known brand, related not only to HIV but to sexual health generally."

Steve Taylor echoes this sentiment. He says: "When we rebranded in 2000, we deliberately kept the 'Sue Ryder' part of our name because it's part of where we come from and where we are going.

"Every charity set up in someone's name probably has a discussion about whether to drop the name, but in our case it just wasn't an option."