ACROSS Greater Glasgow and Clyde Marie Curie has been supporting people to die well at home for more than 20 years.
But as the demand for palliative care has grown, our services have shrunk, with real time cuts to services reducing our impact.
Over 13,000 people each year die across the health board; with over half of these at home, or in a care home.
These funding cuts mean the number of people Marie Curie has supported has reduced, year on year, at a time when the need has never been greater.
So, we’ve been asking people to tell us their stories because care towards end of life is such a priority.
It is not always straightforward and can challenge patients and those who care for them.
The middle of the night is a scary time and, when you are running on empty, with a huge amount of stress and not enough sleep, even the small issues can feel overwhelming.
Maureen told us recently: “My experience as a carer was not a good one. There are numbers to call, but services are stretched. People are not actively dying during office hours. There needs to be more help and respite for carers of people at end of life at home.”
But supporting a loved-one to die at home can be the most incredible experience; spending time together, appreciating the life that has been shared, talking about things that matter.
Our job in Marie Curie is to build up those opportunities and reduce the tough times.
Jacquie said: “When my mum was in her final days we had great support from local palliative care nurses, including out of hours.
They helped manage pain, helped my sister and I care for mum better than we could have done without their support. Also looked out for us as carers, genuinely concerned for our wellbeing too.”
When end of life care goes well, what a difference it makes.
Linda mentioned: “For my husband being able to stay in our home until the very end allowed us all to be together as a family including our dog.
“Marie Curie, with our GP and district nurses, enabled this to happen. I will be forever grateful.”
She goes on to say: “I find it really distressing that other families in the future will be denied this.”
END OF LIFE CARE FUNDING
THIS week The Scottish Sun revealed that NHS Greater Glasgow and Clyde has axed end of life nurses.
A care-at-home deal the health board had with Marie Curie was ended, which forced the charity to let go of 11 employees.
The move has sparked fears patients will be left to die alone while overwhelmed families will be left to cope solo with traumatising end of life care.
Our current health and social care provision is really stretched and so while the intent may be positive, decisions are made that will undoubtedly change the way people are cared for at home around end of life.
We believe we need to do better for the people of Glasgow.
Many of us have friends or family members who have known calm and dignity at the end of life because of a Marie Curie Nurse or the help of a local hospice.
Across Scotland, Marie Curie Nurses have been welcomed into the homes of thousands of people every year.
This is why it’s heartbreaking that after 20 years in the Greater Glasgow and Clyde area, Marie Curie has been told by the health and social care partners it will no longer be providing overnight care and support to people in their own homes across the area.
FUTURE-PROOF WORKFORCE
We know how important it is for people to have access to high quality out of hours palliative care and we know our partners in the NHS appreciate this, too.
We will continue to work with partners across Greater Glasgow and Clyde to look at how services can be adapted and shaped to support care for people in the right place at the right time, and we remain committed to the people of Glasgow and Clyde.
There is only one chance to get end of life care right and, alongside increased support for community services, we’re calling on the Scottish Government to deliver a sustainable, long-term funding plan, that includes ways to future-proof the workforce, so that whatever your illness, you can rely on good care right to the end.
Radical reform is a must. We cannot afford to wait — the time to fix end of life care is now.
If you’re living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309.
