"We only have one chance to get it right" - interview with Dying Matters' Claire Henry

Claire Henry, chief executive of Dying Matters and the National Council for Palliative Care

Thinking about death can be tough, but Claire Henry, who leads Dying Matters and the National Council for Palliative Care, believes we’d be better off if we did. In an exclusive interview to mark Dying Matters Awareness Week, Sarah Brealey meets her.

“I get told: ‘You’re surprisingly jolly for someone who works in end-of- life care’,” says Claire Henry, Chief Executive of the National Council for Palliative Care and the Dying Matters coalition. “But it is not all doom and gloom – you can have fun discussing, for example, the music for your funeral.”

Certainly, when I meet Claire, she’s full of smiles, but is clearly driven to improve things for people near the end of their lives, and those around them. She says this drive comes from two events early in her career. “On a personal level, the biggest thing was the death of my granddad, who I was very close to,” she explains. “He died very suddenly, of a heart attack, and that had a big impact on me. I remember seeing members of my family who needed support.

He died very suddenly, of a heart attack, and that had a big impact on me

“Then, when I started my nurse training in the early 1980s, I was working on a surgical ward. There was a lady who was immaculately cared for in a physical sense, but no one had told her she was dying. That experience made me think: ‘We can do better.’”

Claire did see better end-of-life care on other wards – the difference was a patient-centred approach. “It’s so important to talk to people, to get to know their values and aspirations and how we can learn from them,” she says.

The National Council for Palliative Care (NCPC) is the charity for all those involved in palliative, end-of-life and hospice care in England, Wales and Northern Ireland (the Scottish equivalent is the Scottish Partnership for Palliative Care).

Dying Matters Awareness Week

Dying Matters Awareness Week runs from 9 to 15 May 2016.

This year’s theme is The Big Conversation: aiming to support people to start a conversation and then take action.

There are events around the UK to mark the week. find a Dying Matters event.

Talk about it

In 2009, NCPC set up Dying Matters to promote public awareness of dying, death and bereavement. It is a coalition with more than 30,000 members, including the BHF and members of the public, who can join for free.

Claire wants to get people talking about these issues. “It’s not about death,” she says. “It’s about care wishes, funerals and digital legacy [see box, below]. It’s like an insurance policy – if you have got these things written down and sorted then you can get on with your life.”

She acknowledges that this isn’t, and shouldn’t be, compulsory. “Some people never want to talk about it and we have to accept that,” she says.

Dying is the last thing on most of our minds, but Claire stresses that’s no reason to put off planning. “When we are well, people think ‘It is not going to happen to me’,” she says, “But it does. I had a friend who died suddenly of a brain aneurysm. She hadn’t expected anything to happen – one minute she was there and then she wasn’t.

“We only have one chance to get it right and if we don’t, that can lead to problems for the people left behind. That can make their bereavement more difficult. People want to know they have done the right thing.”

Quality care for all

Claire Henry, chief executive of Dying Matters and the National Council for Palliative CareClaire wants to see good services for all terminally ill people, not just those with cancer. A report published by Marie Curie last year showed that 88 per cent of those receiving inpatient palliative care in specialist units (mainly hospices) in 2012–13 had cancer, even though it only accounted for 29 per cent of deaths in 2012.

Claire says: “I think there are still inequalities, although it’s getting better. Hospice care started in supporting cancer patients. That’s changing now, but… there is room for improvement for people with heart disease, definitely.”

She’s seen this first-hand, including during her work as a Macmillan nurse in Glenfield Hospital, Leicester, in the early 1990s. “I set up the palliative care service there,” she says. “A lot of my time was spent supporting people with heart problems, which I wasn’t supposed to be doing as a Macmillan nurse! I realised they needed our help too.”

The BHF has worked jointly with Marie Curie in Glasgow on the Caring Together project to improve end-of-life care for people with heart failure, which Claire praises as “excellent” for its work to give heart failure patients more equal access to treatment, more choice about where they are looked after, and more joined up services. Because of the uncertain course of heart failure, patients are often not identified as approaching end of life, so have no chance to discuss it and are not referred for palliative care.

Claire also praises Difficult Conversations (a free booklet aimed at healthcare professionals talking to people with heart failure about end of life), created by the BHF in partnership with the NCPC. Claire says people waiting for heart transplants need particular support – because of the shortage of donor hearts, they could die before one becomes available. “I really want to see palliative care and different specialities such as cardiology learn from each other,” she says. “It is about looking at people’s particular needs and thinking how we can work with patients and families to support them.

We believe that everyone approaching the end of life has the right to the highest quality care and support, wherever they live, and whatever their condition

“We believe that everyone approaching the end of life has the right to the highest quality care and support, wherever they live, and whatever their condition.”

Supportive role

End-of-life care isn’t just about the person dying – their loved ones need support too, including after a death. Claire is keen to see more support in the workplace. A 2014 survey from NCPC and Dying Matters found 32 per cent of people who were bereaved while employed didn’t feel their employer treated them with compassion. Dying Matters offers a support programme for employers. Claire believes all employers should have a bereavement policy setting out the support employees are entitled to, and is keen for the government to explore the feasibility of statutory bereavement leave.

“A big part is being aware of when someone needs support, and showing flexibility,” says Claire. “Often people don’t want to go off sick, they want to carry on working because that helps them. Some employers are really good and really supportive, while some people say they are lucky if they get a day off for the funeral.”

In December, the National Institute for Health and Care Excellence (NICE) issued new guidance on care for the last days of life. The previous guidance, the Liverpool Care Pathway (LCP), had attracted criticism for, among other things, water and medicines being withdrawn from the dying person, and some people being classed as dying who went on to recover. The NICE report said: “These were not necessarily a direct consequence of following the LCP, but often happened because of poor or indiscriminate implementation and a lack of staff training and supervision.”

Claire says: “The LCP scared a lot of people. Like a lot of things, education and training is the key. When it was used well, it was individualised care and when it was used badly, it wasn’t.

“The new NICE guidance is very helpful. Key to it is people being assessed as individuals. It is good to have guidance about pain management and food and fluids. The critical part is how you make it local and individualised. We need to make sure staff are supported, and have ongoing training in communication skills.”

Claire believes quality of end-of-life care is “patchy” across the UK and there is still a lot to do. “There is no room for complacency,” she says. “We still have inequalities between age, conditions and geography. This is something we need to get right – if we get it wrong, we can’t go back and correct it.”

Find out more

Digital legacy

As we do more online, from socialising to banking, what happens after death is a growing issue. Claire says: “Digital legacy is a huge area. People may have online bank accounts with passwords instead of paper statements. There may not be a passbook in the drawer any more. If it is all electronic, how do you find the details after someone has died?

“It’s important to leave a record of what online accounts you have. If you’ve lost a loved one, contact their bank, building society or other institution to let them know – you’ll need to provide a death certificate and your own identification.”

Some people want to shut down the social media accounts of loved ones after they have passed away, but different companies have different requirements before they will agree to do this. Facebook allows accounts to be ‘memorialised’ so friends can still view them and post messages.

There are also online memorials for loved ones. The BHF’s Gift of Hope allows you to create a personalised fund page with messages, diary and photo album, while making donations in your loved one’s memory to fund our vital research. Visit.

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