Past, Present and… Future Matters

Mireille Hayden set up end of life care training company Gentle Dusk following family disagreement about what was best for her mother, who died suddenly without having made any end of life plans. Mireille now devotes herself to ensuring others don't have to go through what her family did.

Right: Mireille (standing) delivering a Gentle Dusk workshop. 

It was nine years ago that I started working in end of life care for North Central London Health Authority (remember those? Way before CCGs and PCTs). In those days it was all about the Gold Standards Framework and Liverpool Care Pathway and getting implementation right. Then the job just seemed to get bigger and bigger (commissioning training for care homes; working on a hospice tariff; quality standards in contracts etc).

A lot of progress was made and I do believe we made some positive steps towards improving the quality of care for people with life-limiting conditions. But there was this big gap: we could only improve contracts and train professionals to go so far; if members of the public didn’t want to talk about death then how could we address it with them? How could we provide the right services? How could we ensure they got a good death? I felt I had gone as far as I could with offering services to professionals. It was time to tackle "People, Society and the Taboo"!

At the very same time as I had arrived at this conclusion in my professional life, my personal life was to give me a very painful experience that would seal my path and give me the shove I needed to leave the NHS and focus my time and efforts on Gentle Dusk. 

Four years ago my wonderful mum (pictured left with Mireille), a fighting fit 67-year-old, sent me a text on Saturday 9 October (the dates and details will remain sealed in my brain forever) which read: "Why don’t I take the kids for half-term and give you a bit of a break?” It was so kind and sounded like a great plan. But on the morning of Sunday 10 October, I got a call. It was the type of call that makes everything crash around you, the one where you can hear the words but can’t actually bear to register their meaning. “Your mother has had a severe stroke… it seems she had it when she was going to bed last night… she wasn’t found until this morning… she’s not expected to make it through…” I can still feel the pain in my chest now. And everything after that is a blur of pain and disaster, with the family falling apart and complete disagreement on care, end of life care, the funeral - you name it, we disagreed on it. My mother had no power of attorney, no advance care plan, no will. And we all had very different views on what was best for her. 

That story has no happy ending but it has spurred me on to make a better ending for others.

So what do I do now? Work tirelessly in my professional life to raise awareness of the need to plan and prepare for end of life and encourage open discussions about death and dying.

One of the main programmes of work is the Future Matters programme. This started five years ago when my colleague Debbie Young and I ran a training session for third sector organisations. It was received with such enthusiasm and positive feedback that it encouraged us to develop a whole programme, linking with the voluntary sector, to train Future Matters volunteers in end of life care planning so that they could cascade the information to their families, friends and communities. A pyramid scheme but for the good. And it worked! We trained over 30 volunteers from a range of backgrounds and they went on to arrange activities reaching 433 members of the public, as well as publishing leaflets, newsletters and articles. One volunteer wrote an article for the British Heart Foundation newsletter which goes out to 1.2million people.

Our training programme has developed and improved since then (over the last four years we have delivered the training eight times and trained 110 volunteers). We are currently running the programme in Islington in partnership with Age UK Islington and are getting stronger and more focused on our outcomes - something the commissioners are happier with! In the last year, we have trained 34 Age UK volunteers and within a 12-month period they have delivered 38 workshops, reaching 712 members of the public, as well as delivering 199 individual consultations resulting in 76 end of life care plans being put in place. With funding already secured for the continuation of the programme, we are now looking to further expand to other CCGs (anyone interested?). 

Am I doing all this to heal myself? Maybe. But in the meantime if I have made things better for everyone who has been reached, then all the better. On a personal note, my children and my husband now know exactly what I want. My advance care plan, my funeral plan and my will have all been sorted, and my eldest, now 10, has made it very clear she is after my pair of pearl and gold earrings!

Mireille Hayden

• Email: info@gentledusk.org.uk
• Website: www.gentledusk.org.uk
• Twitter: @gentledusk