National LGB&T Partnership joins forces with Dying Matters

Publish Date: 22/04/2014

The National LGB&T Partnership are joining forces with the Dying Matters Coalition to encourage and support people from lesbian, gay, bisexual and trans (LGB&T) communities to talk openly about end of life issues in the run-up to Dying Matters Awareness Week.

Members of the National LGB&T Partnership are actively highlighting to people they work with how they can get involved with Dying Matters Awareness Week, as well as the practical steps that individuals can take to make their end of life wishes known.

Dying Matters Awareness Week takes place from 12th-18th May and the theme for this year is 'You only die once', or #YODO for Twitter. During the week, Dying Matters will be encouraging people to take five simple steps to make their end of life experience better, both for them and those close to them.

These are:  

  • Write your will

  • Record your funeral wishes

  • Plan your future care and support

  • Consider registering as an organ donor

  • Tell your loved ones your wishes

…who knows what I want?  Who knows something as simple as what songs I want played?  How do I want to be celebrated and remembered? I’m trying to make the decisions for myself now, so they and other loved ones don’t have to agonise over it when I die.

- Read Claire's story at the bottom of the page

Sian Payne of the National LGB&T Partnership said: “We’re delighted to collaborate with the Dying Matters Coalition. We can often be afraid of talking about dying, but raising awareness of these issues among lesbian, gay, bisexual and trans* communities is vital to improving our end of life experience.

“Something as simple as having a conversation ensures that your personal wishes are known before you die and can offer some reassurance, for both the individual concerned and their loved ones. We encourage everyone who identifies as lesbian, gay, bisexual or trans* to start these conversations and make sure Dying Matters to them.”

The collaboration between Dying Matters and the LGB&T Partnership follows studies including ‘Open to All’ (http://dyingmatters.org/page/lgbt-people-let-down-end-life-care-services) which found that many LGB&T people do not feel that end of life care services are open to them and fear that they will face discrimination and a lack of understanding from health and social care providers when they are dying.

Chief Executive of the National Council for Palliative Care and the Dying Matters Coalition Claire Henry added: “Every minute someone in Britain dies but many people still feel uncomfortable facing up to their own mortality and discussing end of life issues. Although not always easy, talking about dying, death and bereavement is in everyone’s interests. That’s why we’re so pleased to be working with the National LGB&T Partnership, in order to ensure as many people as possible from lesbian, gay, bisexual and trans communities feel able and supported to make their wishes known.”

Watch a powerful short film about making those difficult decisions, called 'I didn't want that', by visiting http://dyingmatters.org/page/i-didnt-want-that.

Claire's story

My mum died at 9.27am on Thursday 23rd January 2014.  It was sudden.  Although she had been living with cancer for seven months, we only got the terminal diagnosis two days before she died.

I don’t know if she really had any idea she was dying.  I still think of her every day, and I cry a lot.  I miss her, but actually I don’t feel as if anything was left unsaid with her, or if we didn’t know how much we loved each other, and how much we meant to each other.

I often feel I prepared for her death much better than she did.  You can understand not wanting to talk about it.  It isn’t the cheeriest of subjects.  But we only knew two things about what she wanted to happen when she died: That she didn’t want to be buried, but cremated (just in case she wasn’t dead – she had a fear of being buried alive); and that she wanted ‘Spirit in the Sky’ by Norman Greenbaum to be playing when the curtains closed on her coffin.  And that was it.  I’d had one conversation with her in August 2013, just before she went into hospital for surgery, when we had a conversation about the songs she wanted played at her funeral.  And when it came to making the plans, I was so glad we had that conversation, because I knew we were doing what she had wanted.  It was something so simple, but I knew that it was her choice.

She didn’t leave a will, she didn’t want to talk about what would happen to anything, in particular.  We were lucky because she didn’t have any assets over a certain value, but if she had, it would have been more difficult.  You don’t think about that.  And you don’t realise how little you want to make decisions about money or possessions until you are in that place and you don’t want to reduce such an important person in your life down to a piece of jewellery or a pile of books.  

In the end, I couldn’t really get involved in a lot of the decision making after she died because I couldn’t hold it together emotionally for long enough, but my middle sister was brilliant.  We were lucky to have her strength in the first couple of weeks, because she got things done, made decisions with my dad, sorted things out.  I dread to think what would have happened if I’d been on my own, if we hadn’t been such a close family.  But it really made me think – who knows what I want?  Who knows something as simple as what songs I want played?  How do I want to be celebrated and remembered?

I still haven’t spoken to anyone about this, because I haven’t decided yet, but I will. What I have done is make sure my organ donation card is now in my wallet, and I have written a will so my family knows exactly what I want to happen to my house so they don’t have to think about it.

I’m trying to make the decisions for myself now, so they and other loved ones don’t have to agonise over it when I die.  Because I now know that they won’t be able to think clearly enough, and that if I’m not saying now, I’m putting them in the position of waking up one day, months after I’m gone, thinking ‘did we do the right thing?’.  I want them to know they are doing the right thing.

I will think about mum every day, but not with regret.  I prepared for her dying, and I did what I could to make sure that she died in the way she wanted to, as much as I could.  And I’m going to carry on talking about me dying.  Because if I don’t, who will?