Lisa Younge is an Inflammatory Bowel Disease (IBD) Nurse Consultant working at London North West Healthcare NHS Trust. Alongside her clinical work, Lisa is working with Crohn’s & Colitis UK on their campaign called ‘More IBD Nurses – Better Care’. She recently won the British Journal of Nursing Award 2020 for developing two IBD services as well as her contribution to research. We caught up with her to find out more about her career path and her current projects…

1. Can you tell us your career path, and how you became a Consultant Nurse for IBD at London North West Healthcare NHS Trust?

I started my training as a nurse in 1991 at Whittington Health NHS Trust. After qualifying, I worked on a gastro-intestinal (GI) ward and that's where my interest in GI nursing came about. Interestingly, on the wards we had a mixture of medical and surgical patients, which isn't common practice anymore. But it helped me be able to see the whole journey for people that had inflammatory bowel disease (IBD). I realised then that these were people that were trying very hard to live with a chronic disease and there's definitely something that nurses can do to support them.

A job came up at St Mark’s Hospital for a specialist IBD nurse, so I took that work and set up the IBD nursing service. I then went to the Royal London to set up the nursing service there too. More recently I have come back to St Mark’s where I am in a consultant nurse post supporting and helping to manage a team of 11 nurses.

2. Why did you decided to specialise in IBD nursing?

When I went to learn how to do endoscopy training, they asked if I would like to join the team which was a real opportunity to get my teeth into how I could support people with long-term GI conditions. At the time I set up an advice line to make sure that we were available and accessible to the patients when they needed to get hold of us. And so, really quickly I got more and more passionate about how I could help these IBD patients live their lives.

3. In 2019, you joined Crohn’s & Colitis UK as Project Manager working on the campaign ‘More IBD Nurses – Better Care’ with an aim to increase IBD nursing throughout the UK, to standardise training and to offer support for nurses that are working in post. How has the campaign progressed since you first started?  

This has been phenomenal. Firstly, a massive thank you to Crohn’s and Colitis UK for recognising the importance of the IBD nursing role and specialist nursing role in particular. Certainly, in terms of the specialist IBD nurses, they have done so much to promote the work that we do that can quite often be invisible in healthcare services. So now we are in a position where we undertake national audits to see whether hospitals have got IBD nurses, and whether patients have easy access to them.

When I first started, some hospitals had no access to IBD nurses and so our aim was to improve that. Now, most UK hospitals have at least one IBD specialists nurse which is great. However, just filling in a post and saying that somebody is an IBD nurse specialist isn't fair on the patients – and so we felt that it was quite important that, if you say you are a specialist nurse in IBD, you have a certain skill set so that a patient knows what to expect in terms of level of education and knowledge.

4. Crohn’s & Colitis UK have recently released their first Nurse Specialist Programme, to annually fund 10 Master programmes in advanced nursing practice and recruit 10 MSc qualified nurse specialists to complete RCN Advanced Practice Credentialing. Why do you think it is important to encourage institutions to offer these programmes, and encourage students to specialise? 

The aim of the campaign is to support nurses who are working in specialist nursing posts to fund their Master’s training in advanced nursing practice so that we can help get nurses working at a high level. It's challenging because there are many experienced nurses who've been around for a very long time and have a lot of skills but don't have that specific academic qualification, but I think going forward, we should try and bring nurses up to a minimum standard so that patients can trust what it says on the badge.

5. You recently won the 2020 British Journal of Nursing Award ‘Gastrointestinal/IBD Nurse of the Year’. Firstly, congratulations! This prestigious title was awarded to you for setting up two IBD services, as well as your contribution to research. Can you tell us what the aim of the IBD services are and how these services will contribute to IBD patient care?

The IBD nursing service is very much around patient education, patient support, and service accessibility. We know that IBD is a lifelong condition and that often diagnoses happen in people that are quite young. There is a whole lot for people to get their head around, so what we try and do as part of the multidisciplinary team is to help patients understand what it is that they've been diagnosed with and understand what that means for them. It is individual from one person to the next and so we want to help them to develop coping mechanisms and self-management skills so that they can be that person who just happens to have IBD rather than being completely defined by their condition. And then part of that is giving them freedom – so, we are moving towards more self-management, education about medication, and trying to improve how patients can access services.

Most specialist nurses will do clinics to follow patients up, and to help support their self-management.  And, if patients are admitted to hospital, which is never nice for any of us, then it's quite nice to have a friendly face. There is a lot of advocacy as well, because we know our patients very well, we can represent them at meetings and in situations where they're not able to be there themselves. We can be their voice for them, which is really powerful, and really important to get right.

6. You have conducted a lot of research throughout your career – is there a project that you feel was the most instrumental within the development of your career? 

Probably my dissertation on how older people with IBD access services. At the time, it was the beginning of email contact with hospitals and self-management apps and changes in how to get hold of us – this was a real move from the sort of traditional model of long-term care. And I think doing this study helped shape my thinking in my career. It reminded me that one size doesn't fit all and that sometimes the reason that things have been done for so many years are because there are good aspects as well as aspects that can be improved, so you don't have to throw it all away. It also helped open my eyes to patient engagement, and the importance and power of the patient voice. It also got me thinking about what patients really think and try to make sure that we're delivering services that are appropriate for them.

7. How engaged in research are patients with IBD, and are there key questions that patients often ask about in relation to diet that need further research in order to answer?

Absolutely – firstly, patients with IBD are fantastic with getting involved. They have great networks amongst themselves and share lots of knowledge and experiences, and I've been fortunate enough to work in a couple of large centers that have access to research departments and patients are always willing to get involved and do their bit to try and help their own cause.

A few years ago, the James Lind Alliance did a project looking at what the priorities were for research in IBD. This project was something where patients, clinicians, nurses, and charitable agencies were all involved. One of the biggest subjects that came up across the board was diet. That means everything from what a patient eats affecting their condition to patients eating something to make themselves feel better. It's always a topic that patients are really interested in, but also amongst clinicians and researchers as well. The biggest challenge is, a bit like IBD, diet is very individualised and so there isn’t a simple answer like “eat this and this'll happen”. Thus, what makes it challenging, also makes it interesting.

8. You recently co-authored an article in Frontline Gastroenterology on ‘Organisational changes and challenges for inflammatory bowel disease services in the UK during the COVID-19 pandemic’. How do you think IBD services and patient care in the UK have been affected by the pandemic? Can you share some of the key messages from this article?

There isn’t one single person who hasn't been touched in some way or another by the pandemic. And I think for people with long-term conditions, it is really a frightening time. We watched the news and the government were trying to reassure us by saying there is no need to worry about the pandemic unless you are old or have an underlying health condition – well I’ve often been quoted for saying “but what if we are old and/or have an underlying health condition, then what?”. And that was certainly the case for our patients. And so, there was a huge, understandable increase in contact from patients to their IBD services, which was great because it shows how much trust and faith they put in their services, but it was challenging to meet the volume, and also because we didn't necessarily know the answers to the questions we were being asked.

Another big challenge of the pandemic was that many services started shutting down, like endoscopy, blood tests, stool sample testing and faecal calprotectin – it was a lot harder to get hold of these which made monitoring people really difficult.

The main message from our survey was that there was not one IBD service in the country that wasn't affected by COVID in terms of what happened to their staff and their services. So, the IBD medical and clinician community came together and recognised that access was absolutely fundamental for patients and they had to be able to get hold of us otherwise they were going to flare and make uninformed decisions about medication and self-management. I think doing the article and doing the survey was really helpful to show how important patient care is at this time.

9. What does a typical working day look like for you? And how have you had to adapt during the COVID-19 pandemic? 

I currently work part-time at the hospital and then I also do a day a week working with Crohn’s and Colitis UK. Two quite different jobs, but the charity job has been a fantastic learning curve for me. My day-to-day clinical work would involve meetings with the team at the beginning of the day to plan the day and then help out on our advice line. I review patients that have been referred for high-cost drugs and iron infusions. So quite office and telephone based at the moment, which really makes me miss face-to-face contact with patients.

10. What do you do in your free time?

We got a dog about three years ago and he's quite a big old fella and needs to go for walks, so that's been good to get us out and about. On the weekend, as a family we tend to go out and have nice walks in the countryside which I think is great for mental health. I am also a big reader – losing myself in a book which I would definitely recommend is far better for you than doom scrolling. But, in saying that I am also a big binger of box sets as well! If we are ever allowed to go away again, I love going on holiday, seeing new places and experiencing different cultures.

Posted: 17/08/2021