4 July 2018
On 31st December this year I will have been in the NHS for 40 years after having started my career as a student nurse at Great Ormond Street Hospital. It was a fun time to be in London in 1978 but suddenly I was immersed in this incredibly regimented world of nursing. I remember wearing a pink stripy uniform, a plain white hat, a hyper-starched apron and a collar that was so stiff with starch that by the end of a shift you couldn’t turn your head it scratched so much!
At Great Ormond Street, the children were very sick, just as they are now, but many of the children we look after now just wouldn’t have been alive then. For example, at that time, cystic fibrosis (CF) was only a childhood disease as CF patients would not live out their teens.
We received a letter recently from a mother of a 43-year-old man who was born with transposition of the great arteries (TGA), a congenital heart defect. He had corrective surgery as a newborn but at that time the surgery was very precarious. I am proud that he was cared for here as a baby, and he is still alive and well now, and still attending clinics here. Babies today have far better outcomes and are most often diagnosed before birth.
Support for education
I came to Royal Brompton in 1991, starting as a staff nurse on Rose Ward, the children’s ward. I didn’t have a degree at that stage – nurses just didn’t do that in those days. But I was keen on further training and I came here predominantly because of the support there is for education. I completed a fast track degree in physiology then completed my masters in 1997 among other training opportunities.
We are supported by the Trust itself and, in paediatrics, by a fund for nurse education set up by Lord and Lady Borwick, whose children were cared for at the hospital. I was also attracted to working here because it’s a specialist hospital and I knew I would be working with highly trained, highly motivated people.
I was on the ward for about 18 months and then I went to work in the paediatric respiratory department as a research and family support nurse, which developed into a clinical nurse specialist (CNS) for children with severe respiratory diseases. I was the point of contact for families, which I think is incredibly important and is the core of the CNS role today.
Need for depth of knowledge
There was a lot of resistance in those days to there being nurse specialists. I think some of the consultants in the past found it threatening that there should be nurses with any expertise, as opposed to nurses who would just do as they were told. In those days, some of them couldn’t understand why the medical advice that they give in a clinic wouldn’t be enough for a family.
But, with the increasing complex conditions of the children we were seeing, especially those with long-term health needs, the families needed a point of contact with the hospital team, they needed that continuity and, in turn, as a CNS you needed a real depth of knowledge to support them fully.
The medical advances I’ve seen are amazing. Twenty years ago, diagnosis was in its infancy – now over half of children with cardiac anomalies are diagnosed in utero (in the womb before the baby is born), which is fantastic as it means we can ensure their birth is safe, that they are near the specialist heart centre they need to get to, and that both mother and baby can get the care they need.
I’m really proud that I helped to create the inherited cardiac care team here. We looked at children with inherited conditions and said "whole families are affected by this, let’s treat them together". So the initial team was set up with an adult and two paediatric nurses working together.
Heroism and reward
Our biggest challenge in paediatrics is that in order to ensure we have really good, safe care for our children, we need wonderful, well-trained nurses who are motivated and feel rewarded and recognised for what they do.
Recruitment is an issue. There are so many nurses who are travelling a long way to get here, who don’t get paid that much. There is a huge amount of heroism, people doing un-sung work.
We can’t offer them more money (I wish we could!). But we can do other things. We have put in place staff appreciation cards and people write the most touching things on them. We want staff to feel valued.
We’ve had some difficult times in paediatrics. None more so than when the department was under threat of closure. You try not to take these things personally, but they are very personal, and you think of the amazing teams and people doing extraordinary work, and the idea that it could be destroyed. That was heart-breaking.
I am glad that there are now plans for the future which will keep these world-class teams together. I will have retired by the time the future developments come to fruition, but with the amazing strength, expertise and resilience of my younger colleagues I believe the work at Royal Brompton Hospital will continue to get even better, wherever the service resides.
Funding the NHS
I dearly hope the NHS lasts. I’m doing the job I’m doing because it’s the NHS, because I think it’s the finest public service in the world. And there is no better system for funding it than through taxation. Those who are most able to pay, pay their portion; and those who most need it, get the care. It’s a morally fair system. With any other way of paying there will be significant losers among the most vulnerable in society.
I hope as I grow older there will be an NHS there to help me if I need it.
Multi-disciplinary working bringing improvements
One of the biggest changes that I’ve seen in my career is the birth of multi-disciplinary working. It used to be very didactic, now it’s collegiate. And the CF and paediatric teams were forerunners in this at Royal Brompton and Harefield hospitals.
We now see the genuine pulling together of physiotherapy, dietetics, nursing, medicine, psychology teams – bringing all that together with the aim of improving the lives of these children has been hugely significant.
From the beginning I’ve worked with parents who really knew about their child’s condition, and I have always been pleased to share as much knowledge as I can with them. But people also need advocacy. Even the strongest of people, when faced with awful situations, will find it difficult to advocate for themselves.
I remind staff whenever I can that, for them, it’s easy to become accustomed to being in what is an extraordinary situation. It risks becoming ordinary. Even when someone is coming here for an outpatient appointment, we might think it’s not a big deal, but for the child and the family it almost certainly is. They have to think about what is happening with their health. Are decisions going to have to be made? Are they going to hear bad news? Most people are coming here with very heightened emotions, and we always need to be aware of that.
I know that most people don’t ask for much, they don’t complain easily, they really don’t. It is entirely reasonable to expect to be fully involved in their care or their child’s care, and to have someone take the time to explain the situation to them, which may be quite complicated, in a way that they understand. Families should always be involved.
Making it easier for patients
It’s lovely when you hear feedback and learn that people are being met with real kindness when they are treated here. The little things that we can do to make it easier for people to be here are really important. The environment for example – when you walk into the place, how does it feel? Does it make them feel safe and secure, and that they will get the best possible and safest care?
I think we’re good at this, and we’ll continue to get better – we must never be complacent. It’s an incredible place to work and I feel really lucky that I have worked with some amazing people, doing amazing things.
I’ve been at Royal Brompton for 27 years now, and I don’t intend going anywhere else.