International Nurses Day is observed around the world on 12 May (the anniversary of Florence Nightingale's birth) to honour the contribution that nurses make to society. To mark the occasion we hear from Chloe Poole, a Metabolic Clinical Nurse Specialist at Bristol Royal Hospital for Children.
Thanks for fitting us in Chloe, we know you're busy! Can you tell us a bit about your role at the hospital?
My job was created following an opportunity to expand our metabolic nursing team, to allow us to provide more support to the children here with neurometabolic conditions. The team covers all different kinds of metabolic disorders, including mitochondrial diseases. So my role is quite broad. There are four nurses in our team, and we each focus on developing the service in specific areas. My area includes mitochondrial disorders.
The main part of my job is family and patient support. We're helping them deal with the difficulties of diagnosis and the uncertainties of mitochondrial disorders. When a parent is told their child is one of nine people in the world with that particular disorder, and there isn't a lot of information about it, it's our job to help them work through that journey in their mind. We answer what questions we can, or signpost them to a specialist where appropriate.
What's it like being the first line of support when a child is diagnosed?
Sometimes it means being very honest with people in some quite difficult situations. When a child is diagnosed, families understandably want answers, to know how we are going to fix it.
And we have to say we don't have an answer, we can't fix it, and instead we need to focus on the child and support them the best way we can. Here in Bristol we are lucky enough to have a children's hospice, where families can get extra support, so we might refer them there or to another hospice in the Southwest. Sadly, we sometimes need to refer families to community based end-of-life care, if it looks like that's the path they're on.
Currently there is no cure for mitochondrial diseases (although we are working to change that). What sort of care options are you able to provide?
It's so frustrating that we don't have a cure or treatment to offer our patients. We can offer medications in the form of a vitamin compound, or something like a gastrostomy so the person is able to get the nutrition they need when they can't take food orally. But mainly we are treating symptoms, not the disease itself. We're monitoring the condition and then working reactively when something changes. We can't be proactive, because every child has different medical needs, depending on the disease and the organ system that is affected. We can refer them to specialists to get a better idea of what's going on, but we can't say 'go to this person and they will fix it'.
Are you offered psychological support to help you in your work?
As a team we get support from other nurse specialists within the hospital, and from our matron. For example I may go to a colleague in a similar front-facing role, who can provide advice in difficult times. We also have a psychologist within the team. Her main role is to support the families, but she's also available for us as professionals. For instance, we have a session coming up on supporting teenage patients, and how their mental health issues might impact us personally. Which is helpful for us, and also means we can provide better support for those young people when they are really struggling. For example I might have a teenager with a diagnosis who is feeling desperate and in a very bad place mentally, so it's important I know how best to respond when faced with that and how to look after myself following these difficult conversations.
Do you work with charities like The Lily Foundation to support families?
We have a close working relationship with The Lily Foundation, and I'm in personal contact with Alison and Liz from their team. They offer a lot of things to help us support families. We refer people to them for support, and for accurate information about their condition. We have the Lily info packs that we give out, and using Lily funding we've had little emergency contact cards made, which we give to patients. The card says 'I have a mitochondrial disorder', and has a contact for our team, in case the person has a seizure or another type of medical emergency.
We are looking forward to the Lily Family Weekends starting again, and to try to get our families to go along to those. It's hard for families to meet in person, so those Lily events are brilliant. I'm keen to get involved to support our families, and hope to attend the next one myself. Lily also funds short respite breaks at Centre Parcs for families who need them. One or two of the families we support have benefited from those.
How has the Covid pandemic affected your work?
During Covid we weren't able to bring families into the hospital easily, so that was challenging. In the early stages of the pandemic, we had instances where we had to give quite distressing news via a video appointment, and that was very hard for all involved. But usually we will have at least one in-person appointment, so families know who I am and what I look like when they phone. Some of it is quite emotional news. The types of disease we are dealing with can be hard to understand even for us as professionals, let alone the parents.
The hardest thing is when a parent is crying and you want to give them a hug, but can't because you're on the phone. I find that the biggest issue is the distance. We cover a big area, so many families are far away, and not all of them can travel with sick children. The pandemic has made people much more comfortable using virtual platforms for things you'd normally prefer to do in person, like psychological support. It helps when you've had a bit of face-to-face time already, then you can get the virtual stuff going from there.
Is it important to keep raising awareness about mitochondrial diseases?
Absolutely, I think it's so important that mitochondrial disease is up there on the agenda. Not just with the general public, but with the government and NHS England too. Even when you look at it in practical terms it makes sense, because while mito is a rare disease, these children are requiring a lot of input and resources from a lot of areas of medicine. If there was a way to stop it early on, by investing in research, then we could hopefully try to find a cure or a way to prevent deterioration.
The families we support are so inspiring, how they get involved in fundraising and research. A lot of them read the information on The Lily Foundation website, these big scientific articles. Once a dad came up to me on the ward and showed me an article about gene therapy for mitochondrial conditions. He said it's probably not going to be ready in time for my child, but it may help someone else's. When you see families who think like that, who want to be involved in fundraising, clinical studies and trials, even though there's nothing out there for them at the moment, it's quite incredible. They are so selfless.
What does International Nurses Day mean to you?
I feel that as nurses we are really overlooked, particularly in the current climate of funding cuts. We are working so hard and fighting to get better pay. Often it's the small things that really get to you, like having to pay for parking at work, the canteens and refreshments. It affects us and it affects patients too, ultimately. In the early stages of Covid nurses were the heroes, but now it feels like all that appreciation has moved on, and meanwhile we are all still going through it. In hospitals, Covid is still very much a reality.
I'm really proud to be a nurse. It's an incredible job, and I'm proud of the colleagues I work with and the benefit we're able to provide for patients. But we do feel we're a bit overlooked by the government. Sometimes you have an awful week, with patients taking their anger out on you, and you think, I can't do this anymore. We are the readily available people who answer the phone to patients, and that's because we want to be there for them, but it does put us in the firing line.
What do you enjoy most about your job?
The families, and the relationships you build with them. When you're sat on the floor playing with a child, and all thoughts of hospitals and appointments are gone, you're just enjoying that moment. That's when you remember what it's all about. We hear a lot of people on the down days, so when we see them on a good day, when things are going well, it gives everyone a bit of a boost, and shows you that all that work is actually making a difference.
We love it when families send photos of their children. We stick them up in the office, and whenever you're having a hard day there's a smiling face there to cheer you up. Recently a family sent me a lovely video of their child learning to walk, with him running around a field in a walker, and that was brilliant. That is what makes all the difficult times worth it, it inspires the whole team. The other day a mother called just to tell us that her child had gone a day without vomiting. She wanted to tell us because it had been weeks of work with the team, trying different feeding regimes and treatments, changing things to see what worked, so to get that positive result was amazing. It's those little wins that we celebrate.
All views and opinions are Chloe’s own.
We're working with nurses like Chloe to support mito patients. Can you help?
The Lily Foundation is working with the NHS to improve care for mitochondrial patients and their families. We're making a real difference, every day – but we can only do this with your help. Please donate today, and help us improve the lives of people with mitochondrial disease.