Care and Support Through Terminal Illness
When Estelle's mum faced her final days, she received palliative care from a Marie Curie nurse, "an angel in our darkest hour." Estelle recalls her surprise that non-cancer patients were offered such support and explains, as a Marie Curie Ambassador, how the charity provides support for anyone suffering a terminal illness.
My sister and I stood looking at each other, aghast, not quite understanding why our lovely District Nurse was suggesting we should consider a Marie Curie nurse for my mum's last days.
It wasn't the shock that my mum was near the end, we were only too aware of that. We were so taken aback because as far as we knew Marie Curie only provided care for cancer patients, yet my mum didn't have cancer - she had chronic renal failure as a result of polycystic kidney disease.
The fact was, up until this point, we weren't aware that Marie Curie offered palliative care to any other end-of-life conditions other than cancer-related illnesses. I am so glad they did.
An angel in our darkest hour
We were fortunate enough to have a Marie Curie Nurse. It's maybe a bit clichéd the way it comes across in the adverts, but Pauline, our nurse, truly was an angel in our darkest hour. We knew that mum was getting the best care possible and was where she wanted to be. It's not just the care of the patient but also the support she gave us as a family. If someone can make the saddest hours better, it is a Marie Curie Nurse.
My mum had been diagnosed with kidney disease some ten years previously and deemed unsuitable for a transplant. Between my dad, sister and I and our lovely NHS volunteer driver, Dennis, we managed to ensure mum made her regular visits to the renal unit. It was a huge strain on her, but she remained positive and was a fighter. Looking back, the way she coped with her illness was inspirational. I was fortunate enough to have a line manager who was very understanding of what I was trying to juggle and gave me the space and time I needed. For that, I am forever grateful.
Changing perceptions
A few years ago, Marie Curie supporters were invited to take part in a survey. The charity was looking to "rebrand" - in fact, to use the marketing parlance, to "undertake an extensive brand transformation programme which will include a new visual identity." The reason for this was to refresh how they were seen and understood, to alter perceptions of how they could help people, just as they had our family. I was desperate to help influence this and help them get it right.
The first change that was made was in dropping the words "Cancer Care" from the charity's name, to become simply "Marie Curie." To help change people's understanding, a new descriptive slogan was created: "Marie Curie, care and support through terminal illness" and this perfectly reflected our experience with my mother: The logo also changed. They were looking for something that would better reflect the work they were now involved in. Out went the mainly blue logo - and shining through as our new emblem came the lovely yellow daffodil.
Spreading the word
Following mum's death, I took part in several overseas treks in order to do much needed fundraising. I also then took the opportunity to get involved in speaking to local community groups such as Rotary Clubs, Women's Institutes, Guilds etc. People came mostly to hear about my overseas exploits, but I always made sure that they heard a little of what motivated me to do it, of the care and support we had and, importantly, that 33% (and that figure is now rising) of Marie Curie's work relates to non-cancer related palliative care such as Motor Neurone Disease, COPD, Alzheimer's etc.
People would come up and speak to me afterwards and say that they didn't realise this and would bear it in mind for their own circumstances. It's great to know that I am helping to spread the word. The statistics tell us that one in four people don't get the care and support they need at the end of their life. To me, this just isn't good enough.
Support is there
As a Marie Curie Ambassador, there is still work to be done. I highlight the reach of our work at every opportunity and still ask the question, "Who believes Marie Curie is a cancer charity?" Wherever I am, generally around half of the gathering will believe that is the case. Whilst in no way do we want to minimise the fact that cancer takes many of our loved ones, we do want to highlight the fact that there is support out there for other end-of-life conditions. In many cases, there is support there - it is knowing about it and how to access it that can be the problem.
It would thus be remiss of me not to mention the other services that Marie Curie offer. There are nine hospices across the UK staffed with palliative care specialists that provide tremendous support for patients, families and the primary care teams in our communities. Family members are supported and welcomed, day or night.
Companionship and support
They also have a Helper Service where volunteers visit homes offering companionship and support for up to three hours a week. They can help with making short trips to the shops, providing information on local services and even reading to the patient. There is also a Freephone support line which can offer practical information and emotional support, whatever the individual's situation - and keeping up with the digital age, you can talk with trained staff via the online chat service.
If you take one thing away from reading this, then let it be this: for anyone facing a terminal diagnosis, there is help, care and support available, both for the sufferer and their families.
It's something you cannot put a price on it - it is, quite simply, priceless.
Estelle Nicol
USEFUL LINKS
The Marie Curie website
Marie Curie Support Line (freephone): 0800 090 2309
