Deborah Alsina MBE, now the chief executive of Bowel Cancer UK, was supposed to be an opera singer. She studied music at the University of East Anglia and at the Royal Guildhall School of Music in London, majoring in performance. But during her late teens, doubts started to set in. An interest in the developing world began with a visit to Kenya at the age of 18.

“It was the start of an opening up of a different consciousness,” she says. “I became more interested in international relations and social injustice. Covent Garden dropped off
the agenda.”

She didn’t start working in the voluntary sector straight after graduation, but progressed through a series of jobs before becoming a fundraiser at Chatham House. Then, in 1996 she became a fundraiser at the Refugee Council.

“It was just as the government was first making asylum seekers destitute and tabloids were starting to say: ‘Let’s get rid of these people, how dare they come here and ask for help’. That made me very cross.”

Alsina stayed at the organisation for six years, before leaving to become deputy director of the Panos Institute, which focuses on issues affecting developing countries. At this stage, Alsina thought her future might involve working abroad in the development/refugee sector, but her life was about to be pushed in a different direction.

Close to home

In 2003, her husband Rogelio was diagnosed with leukaemia, two weeks after their wedding. “He’d not been well. We went away for about a week after our wedding, to Scotland and he couldn’t walk up Arthur’s Seat without stopping. This was someone who’d always
been fit [he was in his early 40s]. He was barely eating; and he had this cough that wouldn’t go away.”

Following their return home, Rogelio was given his diagnosis. “The next day he was on chemotherapy. It was a huge shock. For a while, we say now, we lost the ability to dream – because you just didn’t know what was going
to happen.”

The experience gave Alsina an insight into what every cancer patient and their family goes through following a diagnosis. “You’re putting your loved ones in someone else’s hands; and they’re speaking a language you don’t understand,” she says.

She is referring to technical, medical information, but in Rogelio’s case she found herself playing an advocacy role, because although he is fluent in English, it is his second language (he is Cuban) and he sometimes found it difficult, during his illness, to communicate with the doctors and nurses treating him. Alsina was often the person who asked questions when the bureaucracy governing the care her husband was receiving didn’t make sense, or didn’t seem to be operating as it should.

Serious concerns about Rogelio’s future hung over the family for the next few years, while the couple continued to bring up Alsina’s two small children from a previous marriage. Thankfully, he is now in drug-controlled remission. But his illness effectively ended Alsina’s plans to work abroad.

Instead, she became a consultant, and for six years worked with a range of development and refugee-related charities, often on strategy, planning, communications and/or fundraising.

In 2007, having worked with the Welsh Refugee Council as a consultant for two years, Alsina served as its interim CEO, enjoying the experience so much that she began to consider a possible return to permanent employment.

A silent killer

That same year her father was diagnosed with bowel cancer. He died just six months later. Researching the disease, Alsina discovered that it is the fourth most common cancer in the UK – more than a quarter of a million people in the UK today have been diagnosed with it – and the second biggest killer among cancers in the country, leading to about 16,000 deaths every year. Yet she had barely heard of it.

She looked up the two bowel cancer charities that existed at the time, Beating Bowel Cancer, and Bowel Cancer UK; and contacted the latter, offering her services, initially on a pro bono basis. By June 2008, she was its director of services and strategy. Just over a year later, in July 2009, she was appointed CEO.

“I got sucked in,” she says. “I didn’t think I could be as passionate about another cause as I was about refugees, but I was wrong.” For a decade she has endured five hours of commuting, four days a week, travelling into London from the home she and Rogelio share with their three children in the Cotswolds, to work for that cause.

In 2009, the charity had just under 20 staff and an income of about £1 million. “The charity suffered from what you might call ‘small charity-itis’: it was trying to do too much with too little,” says Alsina. “It lacked people, strategy and skills. It had big ambitions, but hadn’t put the building blocks in place to deliver them.”

As CEO, she launched a comprehensive change programme to create those foundations and the charity went from strength to strength. In 2016, it was named Charity of the Year for the £1 million to £10 million category at the Charity Times Awards. Awareness of the disease is undoubtedly greater now than was the case a decade ago. The charity has also supported a great deal of medical research, following work with universities, scientific institutions and patients to identify critical research gaps.

Joining forces

Throughout this period, Bowel Cancer UK and Beating Bowel Cancer had continued to operate separately, with the latter, slightly smaller charity, focused on care provision. Alsina says she had hoped for years that the two charities would eventually merge. In 2017, both boards of trustees decided that a merger would indeed be the best way to serve their common cause.

The charities merged officially on New Year’s Day 2018, but a long, complex transition process has continued throughout 2018, including, during recent weeks, integration of its two completely separate databases.

The new organisation is still relatively small, with an annual income of about £4 million and 60 staff, so it could not hire in outside help to complete the transition; and it has continued to deliver a full programme of work throughout the year. Alsina’s own role in the charity’s success was acknowledged by another award, for Charity Principal of the Year.

The charity now undertakes four key activities: providing information and support services to patients; enabling and supporting research; campaigning for access to early diagnosis and best practice treatment; and public education about the disease. It also runs training courses for health professionals.

A tough environment

The current fundraising environment is, Alsina says, “very tough”. The work of medical charities has also been hampered by the impact of politics on the NHS. “I understand devolution, but four nations and four health policies is tricky,” says Alsina. “I sit on national health committees in different nations and I just see the same conversations happening and think, ‘could we not just do it once?’

“In England, the restructuring of the NHS has caused ongoing havoc. The arms’ length bodies do not work well together. There is a lack of transparency in decision-making. It causes problems for the people who need care and it means that driving change is ridiculously hard in a way it should not be.

“There’s a lot of smoke and mirrors, because politicians want to show they are friends to the NHS. It’s great there’s a new funding settlement, but is there going to be enough money? We already know there are gaps in training budgets.”

She is also concerned about the impacts that Brexit may have, on staffing in the NHS and on the research needed to improve prevention, detection and treatment of bowel cancer. Above all, she says, politicians need to remember the people who feel the impact of these decisions.

“I speak to people who are dying every day,” she says. “What’s most harrowing about that is this is a disease that can be prevented, or cured. We are missing those opportunities because of a lack of investment and action.

“I meet people, who are costing the NHS thousands of pounds, because the disease wasn’t spotted early, and then you think about the cost to their families, the loss of employment, lost taxes – it doesn’t make sense at all. We could absolutely transform this. This is a health issue we can do something about.”

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