The Dying Matters Podcast

Tracey Bleakley, CEO of Hospice UK, discusses the issue of racism in palliative care with Dr Jamilla Hussain, and how the hospice and wider end of life care sector must work together to address this.

Hospice UK’s Web Editor Leila Hawkins talks to Dr Rachel Clarke about her new book Breathtaking – Inside the NHS in a time of pandemic, about her experiences of working on the frontline during the first wave of the Covid-19 outbreak. The palliative care doctor describes the unwavering dedication of NHS staff, the pain of being in the second wave of the virus, and her hopes for the future now there is a vaccine. “We had no treatments, no vaccines, it was a completely new virus. We didn't know if our PPE was going to protect us. We didn't know if we were going to bring Coronavirus into our houses and infect the people we love. We were frightened, but we wanted to help patients in need. We wanted to be where the need was greatest. “At the end of the day, I don't know what life is for if it isn't to try and help each other out when the need is there.”

"The most powerful thing I come away from the hospice with every single day is the realisation that every moment matters." Dr Rachel Clarke's new book, Dear Life, is a powerful memoir about how end of life care can be best approached. As a palliative care doctor at Katharine House Hospice, she works on the front line of end of life care every day. In this conversation with ehospice editor Leila Hawkins, Rachel talks openly about her experiences, and why hospice, palliative and end of life care is so important.

Kevin Toolis has spent much of his career dealing with death, formerly as a journalist reporting and making films from conflict zones, but recently he started interrogating death and dying in a very personal way. He used his experiences with death to write ‘My Father’s Wake’, and reflect on how embracing the Irish way of dealing with death might help us to face our own mortality without fear. Kevin's book: 'My Father's Wake' Dying Matters online Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112.

Greg Wise is well known as an actor and producer, but recently he took up another occupation: trying to get people to talk more about death and dying. In this podcast, Greg shares his experience of becoming a full-time carer for his sister, Claire, after she was diagnosed with cancer, and what he learned from sitting by her bedside as she died. Greg's book: 'Not That Kind of Love' Dying Matters online Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112.

What can you learn from watching thousands of people die? When Dr Kathryn Mannix asked herself that question, she realised that she had a lot to offer beyond the normal scope of her job as a palliative care doctor, caring for people at the end of life. With four decades of clinical practice, Kathryn is uniquely placed to tell us what it is actually like to die, and in her book 'With the End in Mind', makes the case for approaching death not with fear, but with openness and understanding. Follow Kathryn @drkathrynmannix Kathryn's book: 'With the End in Mind' Dying Matters online Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112.

Gary Andrews didn't expect to have to face the fact of death as soon as he did. He was away on a business trip when his wife Joy died suddenly, and he and his two children had to face grief head on. As an illustrator and an animator, Gary had already been working on a 'Doodle a Day' series to share with friends and family. After Joy died, the drawings became a way to for him to process his grief and chronicle his new life as a widower. They've been viewed by thousands of people on social media. Follow Gary: @garyscribbler Dying Matters online Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112.

For the first episode of our new season, we're talking to Dr Rachel Clarke, a palliative care doctor and former journalist who gained widespread notoriety as a leading campaigner in the junior doctors dispute of 2016. We chat to Rachel about what it's like to be a doctor who works with dying people every day, and why she believes it's so important for all of us to talk more openly about death and dying. Follow Rachel @doctor_oxford Rachel's book: 'Your Life in My Hands' Dying Matters online Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Find Dying Matters events in your area with our Awareness Week Map. Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

The theme of this year's Dying Matters Week was 'What Can You Do in Your Community?' It's a question we ask to challenge people to think about ways they can help the people in their lives to talk more openly about death and dying, and make plans for the end of life. Most Dying Matters events are structured with this goal in mind, but they will vary hugely depending on the community they take place in. Our guests this week are the organisers of one of the larger events in Dying Matters Week - the Pushing Up Daisies festival. Sue Robinson, Hannah Merriman, and Mary Clear are are all practicing death doulas: "lay experts" committed to accompanying those coming to the end of life, and their families. They started Pushing Up Daisies to help their community have more positive experiences talking about death and dying. Theme music is by Bernadette Ryan. Find out more about Pushing Up Daisies: www.pushingupdaisies.org Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

Most of us are more likely to only start talking about death and dying as we get older - as the prospect gets nearer, more familiar, maybe even more relatable. However, as we all know, death doesn't just come for us at the end of a long life. It happens to the young too. Our guests this week passionately believe that it's really important to include the voices of young people in conversations about death and dying. Lucy Watts was told that her health and mobility problems were life-limiting when she was seventeen. Ever since then, she has become an advocate for young people who need palliative and end of life care, arguing that they have specific needs that cannot be met by children's or adult's services alone. We dig into what those needs are, as well as Lucy's own beliefs around death and dying, and why she challenges other people in her life to think and talk about it in the same way that she has had to. We also hear from Debbie Young and Joanie Speers, who worked with Gentle Dusk in Islington to set up a death cafe just for young people, providing them with their own space to talk about death and dying. Theme music is by Bernadette Ryan. Find out more about Lucy Watts on her blog: http://www.lucy-watts.co.uk/ Find out more about Gentle Dusk: http://www.gentledusk.org.uk/ Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

If you've been to a hospice before, then you'll know that they are amazing places. Hospices don't just provide nursing care for the dying, or the terminally ill. Since the founding of the first modern hospice in 1967, their work has grown to encompass rehabilitative therapies, emotional counselling, and even bereavement support for families, alongside excellent clinical care. The mission of a hospice is to improve quality of life and wellbeing, so that every patient can enjoy whatever time they have left to the full. This modern incarnation of hospice and palliative care was the vision of one woman: Cicely Saunders. In the 1940s, Cicely was a nurse who believed that medicine was failing to provide adequate and compassionate care to people who were dying, and it was this belief that led her to pioneer new methods of palliative care that totally redefined how we care for the dying. Cicely died in 2005, but in this episode we're lucky enough to talk to a colleague of hers, Mary Baines, who worked with her, and witnessed the birth of the modern hospice movement. The story Mary tells is a story about how one woman's compassion and conviction brought about lasting and revolutionary change, and it's a great one. And for all the hospice staff out there - make sure you listen to the end! There's a song included, courtesy of the Swansong Project, just for you. Theme music is by Bernadette Ryan. 'Hospice Family': Written and recorded by Victoria Kent, Kathy Roebuck and Ben Buddy Slack at Marie Curie Hospice Bradford 25/09/17. Find out more about the Swansong Project at www.swansongproject.co.uk Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

Dealing with the death of someone you love is one of the hardest things each of us will ever have to do. Grief can affect us in strange and frightening ways, some so strange and frightening that it's incredibly difficult to talk about them, and if you can't talk about them, then it can feel impossible to find the help you need. Linda Magistris, our guest on this episode, wants to make it as easy for you to find help as possible. After the sudden death of her partner, Graham, Linda found it very difficult to get up to date information about what services and support was available to her. She didn't want anyone else to have to wait to find help, so she founded the Good Grief Trust - a charity that links up all the UK's bereavement support services under one umbrella. Theme music is by Bernadette Ryan. Find out more about The Good Grief Trust at www.thegoodgrieftrust.org/ Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

Have you ever pictured what your own funeral will look like? The stock image we're given in films and popular culture has all the mourners dressed in black, facing a coffin at the head of a church or standing around it in a graveyard. But funerals are becoming increasingly diverse, as people move away from the traditional models towards something that is much more bespoke and personalised. Jane Harris, one of our guests this week, realised that none of the options presented to her for her son Josh's funeral felt right for her and her family. Instead, they decided to do it themselves. Jane talks us through that process, and how her and her husband, Jimmy, were able to turn such a tragic occasion into something positive and meaningful with the film they made about the day. Today, Jane and Jimmy continue to explore grief and bereavement through filmmaking with the Good Grief Project. We also hear from Hasina Zaman, Director of Compassionate Funerals. Hasina set up her funeral business because she wanted her diverse London community to be able to access completely bespoke services that were appropriate for their personal preferences, religions, and cultures. The message Jane and Hasina have is clear: when it comes to organising a funeral, you can do it your way. Theme music is by Bernadette Ryan. Find out more about The Good Grief Project at www.thegoodgriefproject.co.uk Find out more about Compassionate Funerals at www.compassionatefunerals.co.uk Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

What songs do you want played at your funeral? Whether you have a full playlist already planned, or are planning on using a book of hymnals, we can all agree that music is incredibly important to us. This week, we talk to two people who are using music to help people at the end of life. Andy Lowndes is the founder of Playlist for Life, an organisation that uses music to help improve the care for people with dementia, and helps them stay connected with their families and precious memories. We also talk to Ben Slack, founder of the Swansong Project, who writes songs for hospice patients about their lives. We're even able to share one of them with you - make sure you listen until the end! Theme music is by Bernadette Ryan. 'When You're Gone, You're Gone': Written and recorded by Raymond Kemp and Ben Buddy Slack at Marie Curie Hospice Bradford 28/01/17. Find out more about Playlist for Life at www.playlistforlife.org.uk Find out more about the Swansong Project at www.swansongproject.co.uk Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice and palliative care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

What do you want to do before you die? Maybe you have a bucket list you're working through, or a set of goals you want to achieve before the end. But would those goals be the same if you found out you only had a few weeks left to live? What would really matter to you? Ian Leech, our guest this week, never expected to have to discuss that question. But when his daughter, Mel, received a terminal diagnosis, he found that he had to. In this episode, we talk to Ian about how the conversations he had with Mel helped their family prepare for what was coming, and how it inspired him to help other people have those conversations for themselves. Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.

Why should we be talking about death and dying? For the first episode of our new series, we talk to two people who have decided to spend their time helping others to have those difficult conversations. Megan Mooney, who runs a death cafe, and Barbara Altounyan, the Hospice Biographer, tell us about their work and explain just why having these conversations is so important for all of us. Theme music is by Bernadette Ryan. Find out more about death cafes at www.deathcafe.com Find out more about the Hospice Biographers at www.thehospicebiographers.com/ Dying Matters online: Twitter: @dyingmatters Facebook: www.facebook.com/DyingMatters/ Instagram: @DyingMatters Dying Matters is a part of Hospice UK, the national charity for hospice care. Registered in England and Wales No. 2751549. Charity registered in England and Wales No. 1014851, and in Scotland No. SC041112. VAT No 731 304476.