Breakfast Seminar

Simon Gillespie (CEO, BHF) and Hilda Hayo (Chief Admiral Nurse, Dementia UK) British Heart Foundation and Dementia UK
Simon Gillespie (CEO, BHF) and Hilda Hayo (Chief Admiral Nurse, Dementia UK)

April’s first Care Conversation heard from British Heart Foundation CEO Simon Gillespie and Dementia UK’s Chief Admiral Nurse Hilda Hayo on the challenges and opportunities of running a large charity

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“About 425 people will die today from cardiovascular disease (CVD), and more than 100 of them will be under 75,” said British Heart Foundation CEO Simon Gillespie, setting out the challenges faced by his organisation. “One hundred and ninety will die from a heart attack, and more than 500 will go to hospital because of one.”

The British Heart Foundation principally funded medical research, he said, with UK death rates from CVD falling by more than half since it was founded in 1961. “Yet coronary heart disease remains the UK’s single biggest killer,” he stated.

His organisation’s mission was to win the fight against CVD, he stressed, “and we’re reasonably global about it”. Key challenges in that fight included obesity and overweight, an aging population, and the impact of other long-term conditions, he said. Added to this were austerity measures, changing public expectations – with the last few years seeing declining levels of trust in charities – and a lack of awareness around cardiac issues generally.

Opportunities, however, included the ability to reduce risk and provide valuable support for health services, synergy with other organisations, and the possibilities offered by advances in technology. “But we believe the key to sorting out the problems with CVD is research,” he said. With his organisation’s size came significant responsibilities, the most important of which was to ensure the best value for money and biggest impact.

The strategy to 2020 was to accelerate translation and measure impacts more effectively, as well engage more systematically with other organisations, he said. “All of that takes money. If you have the dream that research is the answer to the problem, then you need to live that dream by funding that research.” The charity’s high street stores now generated around a third of its research programme budget, he told the seminar. “But it’s also about maintaining focus, making sure you stay externally focused on stakeholders, but also – whatever challenges come along – keeping a focus on the long-term.”

“We don’t get a penny from the government at all,” Hilda Hayo told delegates, “which is a great thing and a not-so-great thing. It means we have to fight for every penny we get, but it also allows us to say what we think about the current inequality in services and support for families living with dementia.”

“There are growing numbers of people with dementia, approximately 800,000 in the UK, and these figures are likely to double by 2025,” she said. The majority their own home, and a growing number of family members and other carers were also providing support that was estimated to save the government more than £17bn. Social care had been hit very hard by funding reductions, she added, with the areas that catered for older people tending to be less well-funded generally and local commissioning arrangements also leading to patchy service provision.

Admiral Nurses are specialist dementia nurses with a range of skills, she explained, working in partnership with families and other services. “Collaboration is key,” she stressed. “We have to all work together to make sure that the packages of care are appropriate for that individual.”
Some families could experience difficulties in coming to terms with a dementia diagnosis, which could affect relationships and the family dynamic, so her organisation provided bio-psychosocial support for both family carers and the person living with dementia. Admiral Nurses worked across the community, care homes, acute hospitals, home care and hospices, she said, as well as operating a seven-day helpline service.

“The very last place to be if you have dementia is a hospital. They can be very frightening and confusing places, and it’s not a suitable setting. The person can appear more confused due to the lack of familiar surroundings, the noise, the environment and routine. But 60% of people who go into hospital with dementia won’t have a care package at home and will go straight into long-term care, without having tried to live at home with an appropriate care package. “That’s something we’re trying to that must be addressed address.”

As both organisations were saving large amounts of money for the NHS, delegates wanted to know why they didn’t receive funding. “It is a hard time financially,” Hilda Hayo Simon Gillespie responded. “Some clinical commissioning groups get it, some don’t. Some commissioners are so cautious they commission the same thing over and over again, even if there’s limited effectiveness.” There was also something of a crisis in leadership in the NHS generally, she continued, as well as a reticence to look outside itself for solutions.

On the issue of whether charities should be merging, Simon Gillespie he acknowledged that “there’s an awful lot of duplication, and perhaps not enough duty on trustees to look at the benefits for their recipients rather than the organisation. There are too many large organisations, too many people competing for airtime and we do tend to define ourselves by our differences rather than similarities. Organisations need to be the right size for the job, and you need to be of a certain size when you’re dealing with global problems.” The Charity Commission could place a clear duty on trustees to make overtures to other organisations, he suggested.

Finally, on the question of whether the way forward was for charities to have a strong commercial element he stated that, “it’s a mixed economy and it’s important to have different income streams. You’ve got to be business-like, and I’m absolutely sure that every donor and supporter we have expects us to use that money to generate a benefit and an impact. So that enterprise culture is vital to ensure we make the best of what we’ve got."


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