Marking Dying Matters Awareness Week, research by Dying Matters shows that people in the UK do not have end of life plans in place because they are unaware of what to do, and unsure of how to talk about it. Launching on Monday 10 May, the campaign encouraged families to talk about their wishes and ask: Are you #InAGoodPlace to die?
The PICS specialist Palliative Care Service and team of Advanced Care Planning Nurses have been sharing reflections on how involving the community services around you can make all the difference.
Mother and daughter prepare to spend final months and minutes at home
PICS patient Clare was diagnosed with cancer and died in December 2020, leaving a child aged 11 and six-year old twins in the care of her husband, family and local Mansfield community. Clare’s Mum, Janet Grady talks about how her daughter planned her end of life, and how the care for her daughter extended to the family and community.
Janet (top right of the photo) says: “My daughter was ill for three years and she had decided that she wanted to die at home. In the last few months the consultant said we need to get palliative care involved, so we called them. I don’t know how long these things are meant to take. My mother passed away 10 years ago and it seemed to take ages to get a bed and kit so she could stay at home. But when Jo, PICS Palliative Care Nurse, came to see Clare, she just sorted everything out. Whenever I rang up, the things that we needed were there the same or next day.
There was a team of staff who would come at different times, including Vicky, Amy, Jo and Kirsty, and they were all absolutely brilliant. We could talk to them and tell them everything. When we had any questions they’d sit and listen and talk us through it. Every time we needed them, they were there within 10 or 15 minutes. It was a help to me and the rest of the family, especially Clare’s husband. I just thought they were absolutely fab.
When we had the funeral we asked for donations instead of flowers and we wanted to spend it on something worthwhile. Towards the end, Clare had syringe drivers (which help to manage symptoms more comfortably) and I remembered that the District Nurse had said that getting them is quite hard, so we wanted to put money towards that. We never thought we’d get what we did (over £6,500). But Clare was very well known and of course everyone wanted to support her.”
Assistant head teacher Nik Shively and deputy head teacher Paula McCay, at the children’s school, St Philip Neri with St Bede Catholic Voluntary Academy, led the community to rally around the family. Inspired by the funeral donations going to help more patients at the end of their lives, they raised thousands of pounds from sponsorships to shave their heads, in memory of Clare.
Nik told the local paper, Mansfield Chad: “Clare was a vibrant and well-loved mum to three young children at our school. Working with the family taught me how a family can survive the most heart-breaking, life-changing time with strength, determination, humour and courage. Clare was brave and strong in her long fight against cancer. We wanted to remember her. The whole community has been so supportive of the family and the PICS team.”
Jo Egbury, Clinical Nurse Specialist in the Palliative Care Team explains how the service works: “We provide specialist care for patients and their loved ones, making each day and night as comfortable as possible. We think it’s really important to support families to live well as they spend their last weeks and days together.
“It had been incredibly heart-warming and overwhelming to see how the community has come together for the Grady-Lennon family. Clare was an absolute pleasure to know and look after. She has had an impact on a lot of people, myself included, and I will never forget her.”