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Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
We have nearly 32,000 members, and are actively enlisting those that are committed to supporting changing knowledge, attitudes and behaviours around dying, death and bereavement.
Since his daughter Melissa’s death from non-Hodgkins Lymphoma in 2008, Ian Leech has worked to raise awareness of end of life and bereavement care.
Melissa was diagnosed the day after her 20th birthday and died less than a year later. Since then, Ian has raised more than £20,000 for the Lymphoma Association, and become a spokesperson for the National Council for Palliative Care and Dying Matters, and a Marie Curie Expert Voice. In 2010 his campaign to change the benefits law for students diagnosed with long-term illnesses was partly successful, and he continues to campaign on this.
Ian recently took up a post as Community Engagement Officer at Staffordshire's St Giles Hospice, a role, he says, that everything he has done since Mel’s death has led to. In 2012 Ian was chosen to carry the Olympic Torch through his hometown of Burton, where he lives with his wife, Julie. He has one other daughter, Becky, who lives and works in London.
Why did you decide to champion end of life care and bereavement support?
Having had a good personal experience of end of life care, I wanted to make a difference to those who hadn’t had such a good experience.
It was only after Melissa’s death that I realised her end of life care wasn’t average, as I didn’t have anything to compare it to. From the moment Mel was diagnosed to the moment she died and beyond, we were surrounded by good people who knew how to communicate with us and with each other, and who made us feel part of the team. They told us what was happening, and why, and encouraged us to let them know if there was anything we didn’t understand or felt uncomfortable with.
When I started attending meetings about end of life care and bereavement support I tended to feel the odd one out, almost shyly saying, “Actually, ours was a very good experience.” But hearing about bad experiences, about people who’d been completely shut out of their loved one’s care and not told anything, made me determined to help ensure everyone could have a positive experience. I want to see everybody getting the same quality of care as Mel. It shouldn’t be dependent on any one consultant, hospital or area.
How did you become involved with Dying Matters and NCPC?
Two years after Mel died I joined the Lymphoma Association, working for them as a Trust, In Memoriam, Tribute and Legacy Fundraiser. But I was seeking an outlet for my passion for improving end of life care and bereavement support. I Googled 'end of life care charities' and NCPC was the first one to come up. I spoke to Jo Black [Dying Matters and NCPC Community Involvement Manager] and she asked me to get involved.
Dying Matters and NCPC have helped me in several ways: by listening; by encouraging me to share my experience; by giving me confidence; and by helping me make a difference for Melissa. The volunteer work I do for NCPC and Dying Matters I probably wouldn’t be able to do through other charities.
How important is Melissa’s story in raising awareness of end of life care issues?
Hugely. In the beginning I thought I had just one story to tell, but I soon appreciated there were many different aspects to our story that could impact on different areas. I’ve spoken about bereavement support to bereavement groups; breaking bad news to junior GPs; financial issues to financial organisations; end of life care to nurses. I’ve spoken to NFU Mutual, to schools pupils and staff, WIs and Rotary Groups - the list goes on.
Lots of people help charities by making donations, which are of course vital, but equally important is the gift of time. Just by sharing your story you can make a huge difference to people. They realise they’re not alone.
Are you working with any particular sectors at the moment?
In my community engagement role, I have been working recently with health and social care students at a local college. Care assistants are the people you’ll see most regularly in the ward. They might be the ones at the bedside when relatives have questions, or when the dying person decides they want to talk, and they have to be able to deal with these difficult conversations. If they don’t feel comfortable, it’s going to show.
What made you want to launch the Student Benefit Campaign?
I began the campaign in November 2007 after we discovered that Melissa wasn’t entitled to any immediate financial support after she suspended her studies to recover from her illness. Her initial prognosis was good, and she hoped to return to university after a year out to recover.
We applied for Income Support (now ESA), Incapacity Benefit and Disability Living Allowance (DLA). At the time it was assumed that because Melissa was a student, she had drawn on her student loan. She hadn’t. We were refused Incapacity Benefit because she was a young person and hadn’t paid enough into the system. DLA was applied for, but we had to wait three months before we could apply, then it took a further three months to process.
Melissa was told to give up her studies or draw on her student loan. Basically, she was taking out a loan to recover from cancer. The fact she had years to pay it back was mentioned, but is totally irrelevant. The principle and morality of the situation were wrong.
My campaign has been partly successful, in so much as students are now not deemed to have drawn on their loan and are assessed on an individual basis. However, students cannot claim ESA unless they are receiving DLA, and many students, despite having long-term illnesses, do not pass the criteria laid down to be awarded this benefit. The fight goes on, and has been in the hands of Iain Duncan-Smith for nearly a year. As yet there are no changes to the system and currently if a student suspends their studies to recover from cancer or any long-term illness they may struggle to receive financial support.
Together with your wife and daughter, you cared for Melissa at home. What particular issues did you face?
We cared for Mel for nine months, but some carers do it for years or even decades. I didn’t even consider myself a carer until I came to an NCPC People in Partnership meeting. As far as I was concerned I was a parent doing what any parent would do, and if somebody had labelled me a carer I would almost have rebelled against it. To me, a carer was someone contracted to come into the house and look after someone.
I’m much more carer aware these days. I feel strongly that hospitals need to do more to support both patients and carers. Sometimes they don’t see supportive care as medical, as part of their remit. We often found out more about what help was available by talking to others in similar situations in the waiting room than being offered information by the professionals.
Have you seen any improvements in attitudes towards death, dying and bereavement?
I think these subjects are still very taboo. People shy away from talking about them but I find that, once they start, the floodgates open and they can’t stop. Mel talked about what she wanted in terms of her end of life care and her funeral. Knowing what she wanted made organising things so much easier. I remember our GP asking Melissa about resuscitation and her immediate response was to say that she didn’t want to talk about it but, anyway, she wanted to be resuscitated, she wanted to live as long as possible. Eight days later, with her condition having deteriorated somewhat, she changed her mind. That initial conversation was so important. There may never be a good time to have these conversations, but it is important they are had.
What are the biggest challenges in delivering good end of life care currently?
I find it hard to believe that end of life care communications training is not currently mandatory for every healthcare professional. We need to communicate well. This is a huge challenge. I remember giving a talk to a group of community nurses and one of them said that she tried to avoid having Do Not Resuscitate (DNR) conversations as she found them so difficult. If you’ve got community nurses who don’t want to have DNR conversations, something is very wrong with the system.
You fronted our Awareness Week 2014 launch event. Was this a big step for you?
If someone had told me five years ago, when I was working as a civilian in the police, that I’d be chairing a national conference in London on end of life care, I’d have said “On your bike!” But NCPC gave me the confidence to do it. Yes, I was a bit nervous, but then I think of what Mel went through and it puts everything into perspective. I often think, what is the worst that could happen?
How can people support you?
By supporting you! I want to ensure that the "4 c’s" afforded to Melissa are afforded to everyone: care, compassion, communication and common sense. To ensure change we need to work together, no one person can do it alone. We need the support of others, and to work with people who know what they’re doing, organisations like NCPC and Dying Matters.
Ian is raising funds for the Lymphoma Association on 21 June 2014 by walking 42 miles across Wales in a day. To sponsor him, visit: www.justgiving.com/walkingacrosswales
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66