'We want the world to know what it's like to be us'

When a TV channel wanted to make a film about young people with a terminal degenerative condition, their college was interested but wary - it was the students' enthusiasm that swung the decision.

Stuart Wickison
Stuart Wickison

In early October, Five broadcast a documentary as part of its Extraordinary People series. The film followed 19-year-old Stuart Wickison, who has Duchenne Muscular Dystrophy, a degenerative condition that progressively weakens all his muscles and will lead to his early death.

Despite the fact that his life expectancy does not stretch much beyond 20, Stuart is determined to study art at university. The documentary shows him studying for his A-levels at a residential college for the severely disabled and making the break from his current accommodation, which provides round-the-clock services, to a new environment where much less can be taken for granted.

Much of the documentary was filmed at Treloar's, a college for disabled people in Hampshire that Stuart attended. It is run by the Treloar Trust, a charity. The documentary offered unprecedented exposure for the trust's work, but the decision to allow the film to be made was not an easy one and caused the charity to think carefully about its relationship with the media.

The initial proposal from production company Granada was to focus on five boys from the college with Duchenne's. It was only when filming began that the director decided to concentrate on Stuart's story, although the others did appear in the film. Tony Reid, chief executive of the Treloar Trust, says: "I had to ask myself if this was really all right for our boys and what emotions it would bring up in them as they went through the filming process. And what about talking about dying early?

"I did ask myself whether we could find the right support for our students, not just when they went through the process, but also post-screening. As we went through, it became apparent that one student would receive more exposure than the other four. How would they react?"

The college also had to consider the effect on other students. The college has 180 residential students, aged 16 to 20. Ten have Duchenne's, but the vast majority have cerebral palsy. The filming was scheduled to take place during the summer term when many were studying for exams, giving Reid other dilemmas to wrestle with. "Was it likely to be intrusive for other students?" he says. "We were filming five students, so we had to ask ourselves what that would be like for the other 175."

What swung the decision was the visible enthusiasm of the film's potential subjects. Treloar's has always encouraged its students to have a voice. When one of the college's physiotherapists put the original proposal to them, they had no qualms. "She was amazed by the overwhelming response," says Reid. "The reaction from the boys was: 'We want the world to know what it's like to be us.'" Reid put his misgivings to them, but they were sure they wanted to go ahead with the project.

Filming put severe demands on the charity. When Five commissioned Granada to make the documentary, filming began almost immediately. There was no time to get Criminal Records Bureau checks for the film crew. This meant they had to be accompanied by a member of staff for the entire time they were there. That duty fell to newly installed head of appeals and communications Kate Walker. It was not merely a case of blocking out a couple of weeks of her diary: filming lasted for three months and, for the first month, members of the crew were at the college almost every day (they shot 50 hours of footage in total). The production team usually consisted of only two members - a director, who was also the cameraman, and a sound man - but occasionally others would join them. If the crew wanted to split up, another member of staff had to accompany them.

Walker also had to set boundaries. Reid commends the documentary's director - John Joe Bardsley - for his sensitivity, but there were instances when the demands of the film-makers conflicted with the wellbeing of Stuart and the other students. On one occasion, the crew wanted to do a morning shoot with Stuart after two intensive days of filming, but he needed to revise for an exam the next day and Walker decided he needed some rest.

Towards the end of filming, Stuart agreed that his farewell party for friends at college could be filmed, but then changed his mind. "The crew were very respectful of that," says Walker. "We were fortunate in that we had a director who did understand the complexities, and we worked together. If he had been more pushy and less willing to compromise, it could have been a problem."

The charity was allowed to see the final version of the film before broadcast, but only to correct any factual inaccuracies. It didn't need to, and was extremely happy with the result. "I have been through experiences in the advertising world where things haven't gone to plan," says Reid. "The best moment I had was at the end when, having seen the film, Stuart said: 'That's exactly how I wanted it to end up.'"

According to Walker, the subject could easily have been sensationalised. "It might have shown the young people as victims or in a way they weren't comfortable with," she says. "But this film demonstrates that it is possible to communicate the issue in a sensitive way."

But the broadcast of the film did not end the demands on the charity. Anticipating an unprecedented surge of public interest in its work, Treloar's set up a special helpline to cope. "We set aside members of staff to deal with queries because we were so concerned that it should not intrude on college life," says Vanessa Casey, director of external affairs at Treloar's. "We did quite a lot of preparation. We talked to the college senior staff meeting so we could tell staff where to direct calls. We knew who our official spokesperson was going to be. We knew which calls were going to be routed through to whom. Senior members of staff made sure their diaries were clear on the following days so they could be available."

In the event, such preparation was unnecessary. Five initially agreed to broadcast the helpline number, but changed its mind a week before broadcast because it didn't want to be seen to be favouring one particular charity. Most of the public inquiries that followed the documentary came by email, routed through the charity's website, which saw 600 to 700 more hits in a day than was normal. Enquiries ranged from expressions of support for Stuart and his friends to offers of volunteering help at the college.

Media interest was as strong as expected. The Daily Mail, The Observer, the Times Educational Supplement, BBC Breakfast News and Radio 4 all previewed or followed the documentary up. The college was invited to comment on a separate news story because of the coverage generated by the documentary. BBC Five Live even asked Treloar's to comment when it ran a debate about a disabled man who went to a Spanish brothel to lose his virginity.

The charity has not yet reported any quantifiable increase in donations, but says raising funds was never the motivation in the first place. "We made it very clear to the students that this wasn't about fundraising," says Reid. "We weren't going into this to raise money. If there was a benefit to Treloar's, it would be that more people would see what we do. It was an excellent profile-booster to a wider population, but seen through the eyes of the students."

<h2>The seven lessons Treloar's learned</h2>

  • Make sure your beneficiaries really want to do it. Are they aware of the demands and the intrusions that a TV documentary will mean? Could it be damaging to them? Do they still really want to tell their stories to the world?

  • Be confident that your charity is strong enough to be put under the microscope. A documentary will expose any internal divisions or weaknesses and you can never guarantee that your beneficiaries will say nice things about you.

  • Sign a contract with the TV company. Ensure that both sides know what they can expect. For example, Treloar's framed the contract so that it had the right to see the final version of the documentary to correct factual inaccuracies.

  • Build a good working relationship with the film crew, but retain the right to say 'no' if you feel the wellbeing of your beneficiaries could be undermined.

  • Be under no illusion about the work involved. A documentary will be a disruption for your charity both during and after filming.

  • Be prepared for media interest after broadcast. Have official spokespeople primed and make sure staff know who to refer journalists to.

  • Make the most of any fundraising opportunities. Fundraising should not be your main motivation, but public awareness can be used to generate funds. Treloar's is launching a direct mail appeal using the story of the students in the Five documentary.

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