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We have been Highly Commended in the Linda McEnhill Award 2018 (presented by the Palliative Care for People with Learning Disabilities Network).

Our partnership work with Centre 404, to ensure that people with learning disabilities are involved in advance care planning, has been Highly Commended in the Linda McEnhill Award, 2018. We have been delivering training for Centre 404 since 2014 and this has given staff the skills and confidence to approach difficult conversations about death and end of life care planning with sensitivity and assurance. You can read more about the Award and our entry here.

"After the Gentle Dusk training, I completed an end of life care plan with a service user who has a mild learning disability and who is recovering from an aggressive cancer. In the past he has been reluctant to talk about death but following a piece of advice taught on the course, I used an Eastenders storyline as a prompt. The next time I had a support session with hime he asked if anyone I knew had died. I shared the experience of losing my grandfather. He revealed to me tht no-one he knew had ever died before and that it was a concern of his. the fact that he now feels free to express his fears is a sign of real progress"

Matt, Senior Support Worker, Centre 404

Islington Dying Matters Festival 2018 - Lifting the Taboo, Making Space for Conversations

"We are proud to have involved young people and their communities in conversations about death, dying and bereavement through our 'Light behind Death' photography competition and online exhibition. The exhibition alone had 312 visitors. We also engaged in conversations with 236 people at our Dying for a Cuppa event at Angel Shopping Centre and Death Cafe and we talked and drew about people and things we had lost with people who have a learning disability"

Debbie Young, Senior Partner at Gentle Dusk

Please read the details of our events and their outcomes in our full report:

Dying Matters Festival Report

In the Media

We are delighted that the work of Gentle Dusk, including our Future Matters project and Dying Matters Week festival has been featured on Hospice UK's ehospice website. On August 01, 2018 ehospice writes about our 'Light behind Death' photography competion for young people and how we have engaged young people using the arts. On Dec 4, 2017 Joanie Speers, one of our Future Matters volunteers tells e-hospice how she enjoys helping people think about the end of life they would like.

We also enjoyed being part of Episode 7 of The Dying Matters Podcasts. In this episode Debbie Young and Future Matters Volunteer, Joanie Speers, talk about how we set up and facilitated a Death Cafe just for young people, providing them with their own space to talk about death and dying. Our part of the discussion starts at 18:00 mins.

Our 2016 Dying Matters press release covering death, dying and bereavement and promoting our 'Tea and Death' events was published in the Islington Tribune and the Islington Gazette.

Our awareness raising poetry evening which we organised for Dying Matters Week 2014 was also featured in the Islington Gazette.

Our Future Matters programme has been covered in the Dying Matters Autumn 2013 Newsletter and
Dying Matters August 2014 Newsletter and in the NCPC Inside Palliative Care December 2013 Magazine.

A more personal story from Mireille Hayden featured in the Ham and High on May 19th 2011.

Planning Your Journey

Just imagine going on the longest journey you’ve ever been on; to a faraway distant land with no plan to ever return. Would you consider not getting anything ready for it? Not telling your friends and family about your plans? And not organising anything, not even your passport? You’d just never do that would you?! Or would you?

How about your final journey? The one where you take your last breath and leave this world? Why is it that every single of one of us makes that journey yet the majority of us have made no plans for it, haven’t shared our wishes with our loved ones and think we’re too young to do so?

Let me tell you a personal story…
I’ve been working in “End of life Care” (as they call it) for a number of years. One of my main concerns has always been the lack of openness in society around death and dying. Campaigning for greater awareness, open discussions and better planning for people’s own end of life is very important to me. If people can talk about their wishes for their last days, their funeral and all the issues related to those, it would make the last journey a little less difficult, especially for those left behind.

To practice what I preach I approached my mum about a year ago to find out whether she had thought of her end of life, what she wanted, whether she had made any plans. She laughed. She said she was way too young for all that. And of course she was. As a 65 year old, she was young, fighting fit, with no medical problems and a very busy life looking after her husband, her 6 grandchildren, walking the dogs everyday, looking after the 2 cats, having friends for dinner nearly every week. It was exhausting just looking at her! So I never brought the subject up again.

On the 10th October 2010, I got that call. The one that comes out of nowhere and changes your life forever. Mum had had a severe stroke in the night and hadn’t been found until the morning. We were told she was going to die. How could she? She’s so young. She’s so fit. What do we do?

At the moment she’s still in hospital. She’s unable to walk or talk. Her left brain is completely dead. She will never recover. She will never be able to talk again. I don’t know how long she will live. I don’t know what she wants for her funeral. I don’t know how she wants to share out her possessions. She hasn’t made a will. She never talked to us about it. Right now, it’s just a worry too much. What I know for sure is that in this time of great sadness, mum would have never wanted us to worry and struggle because she never put her final plans in order. But she can’t do anything about it now. When she dies, I won’t know what we’ll do.

What can you do?
You can start thinking about what you would want for your end of life. You can talk to your GP about any particular medical wishes you have. You can start looking into your funeral arrangements. If you haven’t written a will, you need to sort that out. You can start a conversation with your close ones.

Don’t put it off to another day, start today. 10 days before her stroke, my mum had a conversation with a friend; she told her she really needed to sort out her end of life care plans. She didn’t do it. In those 10 days she didn’t find the time.

Practical Help
There are a range of organisations that offer help and support.

Age UK has a great LifeBook where you can record all your details (financial, vital documents, possessions, funeral wishes). When I looked through it, I couldn’t help but think what a relief it would have been if mum had written one of these. Call Age UK on 0845 685 1061 and quote re ALL025 to obtain your free copy.

You will find good tips about how to start the conversation with your close ones and further support in

For me it’s all too late but for you it’s not. Make the most of that.

Mireille Hayden
Senior Partner & Daughter of a Loving Mother


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