“We help people live their life as well as they can, for as long as possible”

I've been a Clinical Nurse Specialist (CNS) since July 2021. I worked on intensive care when I was a newly qualified nurse, which I really enjoyed.

Around 15 years ago, my mum and I nursed my dad when he was dying, which gave me a real passion for palliative care. My dad had a CNS called Janet who was incredible, and I remember thinking 'one day, that's what I'd like to do'.

I worked on intensive care for a few years after my dad died before joining a Hospice at Home team at a local charity. I did that for eight years. I loved it, but I knew I really wanted to push myself, so when this CNS role came up at Marie Curie, I decided to go for it.

Living well

I'm based at the Marie Curie Hospice, West Midlands  , but most of my time is spent out and about in the community and at people's homes. We work closely with the in-patient unit at the hospice, and often people will come into the hospice for support.

People get referred to us at different points in their journey, not just at the end stage of life. We get a lot of referrals from the hospital for complex cases, which might include uncontrolled pain or psychological distress.

We start off with a visit which involves a holistic assessment of the patient to see how we can help them. We look at people's symptoms and how we can control those to help people carry on living their life as well as they can, for as long as possible.

Amazing support

If we can't help directly, we signpost to other services such as occupational therapy, physiotherapy, counselling, or day services run through the hospice.

The amount of support available to people is amazing, and people are often quite surprised that within a week of seeing us, they are then in touch with lots of other people from Marie Curie who can help them.

As people become more poorly, we support them with end of life care, finding out what their wishes are, and trying to make them happen. We provide lots of support for people's families as well.

So rewarding

One of the most rewarding parts of my job is being able to make a difference to someone's life. If a patient's pain stops them from leaving the house or impacts their quality of life, and we manage to get their pain under control, they can start doing the things they want to do again.

I work with a young lady called Jyoti   who has pulmonary fibrosis. When I first met her, she couldn't leave the house because she was so anxious. Now, we've been able to manage her symptoms to a point where she is really living her life, despite being poorly.

I remember working closely with one man whose wish was to die at home. He told me he used to love going to the beach and that he was sad that he'd never get to go again. He needed a short stay in the hospice for symptom control, so while he was there I asked the therapy team if it would be possible to throw a beach party for him at the hospice.

The therapy team got some bits together and he took a liking to a seagull that we had put in his room. When it was time to go home, he asked if he could take the seagull home with him and it sat by his bedside until he died.

He got his wish to die at home, and at his funeral, the seagull sat on top of his coffin.

Cost of living

It's very rewarding when I help someone achieve a peaceful death in the place they want to die. To me, a good death is when someone is in the place they want to be, pain free and with their symptoms controlled, free from agitation, and surrounded by the people they want to be with.

Being a CNS in the community is a challenge because so many people live in deprivation  . There are also a lot of people who live completely alone and don't have anyone to look after them or even collect medication for them, which is hard to see.

The cost of living and the energy crisis is making it difficult for people to heat their homes  , which makes their symptoms worse and makes it harder for them to cope mentally. We put everything we can in place for people, and signpost where we can't, but sometimes that still isn't enough.

It's hard to walk away from someone who's in a freezing cold house at the end of a visit, and I think about it a lot.

Pulling together

It's a heartbreaking statistic that every five minutes someone in the UK dies without the care that they need. Our service is so needed; every day we get new referrals, and there's never a day where our referral box is empty. The amount of people that need care is only ever increasing. The more people donate to Marie Curie, the more we can help.

Marie Curie really pulls together to make things happen for people. Often people are in a crisis situation and without hesitation everyone at Marie Curie gets involved to make sure they're supported, either at home or within our hospice as an urgent admission. Everyone really cares, nobody ever says "I can't do that" even if it's not their job, they always find the person who can help.

In society, there's so much focus on when babies are born and getting that part of life right, and I think it should be that way at the end of someone's life because it's just as important. It's important for the dying person, and it's important for the people they are leaving behind.

Everyone deserves to be cared for at the end of life, but sadly one in four people won't get this care.

You can help every Jyoti, every dad and every beach lover, everyone, get the end of life care and support they need. Donate to the Great Daffodil Appeal today.

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