Dying Matters..... Heather & Steve Read Heather & Steve's story
Dying Matters – This week (18 – 24 May 2015) is Dying Matters Awareness Week (www.dyingmatters.org). The MND Association is a member of the Dying Matters Coalition, which has 30,000 members and works to help people talk more openly about dying, death and bereavement and to make plans for the end of life. We know that these issues are really important to people living with MND and their carers, and to people who have been bereaved, so during the week we are highlighting the stories of four people affected by the disease.
When Heather Smith’s partner Steve was diagnosed with MND they vowed to be open with each other and not shy away from talking about death.
Now, three years on from Steve’s death at the age of 51, Heather believes those conversations made it easier to plan for what lay ahead and gave her the freedom to contemplate a future without him.
She explained: “Steve was a scientist and from the moment he was diagnosed in August 2009 he was very pragmatic and understood what was likely to happen.
“We discussed various scenarios and what he wanted to achieve during the time he had left.
“We wanted to get those conversations out of the way and then enjoy the time we had together.”
Heather said that Steve would often make jokes about the situation, something that others around them sometimes found difficult.
She said: “It was never an issue for us as our personalities allowed us to have those conversations. It felt very natural.”
Heather is now a Campaigns Contact for the North Wiltshire group of the MND Association. During our recent General Election campaign she called on politicians to ensure that no one with MND would die without a voice.
Why are we highlighting end of life issues?
We know that when people living with MND are given the opportunity to talk about end of life care, they overwhelmingly find it useful (95% of those surveyed by us in 2012). However, we also know that around a quarter said they had not been offered the information about end of life care they would have liked, and nearly half said they had not yet taken steps to ensure their preferences were known, despite planning to do this. We’re working hard improve this picture.
How do I get involved in Dying Matters week?
Find out about events in your area and download resources by visiting www.dyingmatters.org/YODO. You can also participate on social media using the hashtag #YODO (which stands for You Only Die Once).
How do I get involved in campaigning?
As well as raising awareness of the issues, we actively campaign to ensure the right services are in place to support people with MND from diagnosis until the end of life. In the run-up to the General Election we secured commitments from all the main political parties to improve care at the end of life. Find out more here.
To get involved in our campaigning which spans a range of issues visit www.mndassociation.org/campaignwithus
How do I get more information about end of life care?
We provide a comprehensive and candid guide to help people with MND to plan ahead and communicate their end of life decisions to family and professionals. You can download the full guide or selected sections to meet your needs at: www.mndassociation.org/eolguide or you can order a printed copy of the guide by contacting our MND Connect helpline: 08457 626262 firstname.lastname@example.org