The Big Interview – Nicola Lewis

Nicola Lewis has been a DSN for nearly 19 years and had lived and breathed diabetes in her professional life. However, she was forced to deal with it personally, when her young daughter Olivia was diagnosed with type 1 diabetes.

Here, she tells The Diabetes Times how the diagnosis has affected her work life and how she approached diabetes as a parent and healthcare professional. 

What has been your biggest achievement in diabetes care?

This is a difficult question!  In my 19 years as a DSN I have learned so much and been involved in every aspect of diabetes care from adult community to paediatrics to setting-up pump services and even working as a pump nurse specialist.  I am proud to have been involved in these different challenges.  

Within my first role I set-up a new PDSN service for the locality. I was mentored by an excellent senior DSN – who recognised the need for children and because of my dual qualification – brought me in “through the back door”. I was able to shape the service around the needs of the children and families with diabetes.

I developed a local support group enabling people to get together and meet. This led to me taking 30 children with type 1 away on weekend activity camps, days out and evening events.

I also started a small number of children on pumps which was a very new initiative for the time. This was a great time for me professionally and I am so pleased I was given the opportunity to make a difference to so many children and their families.

More recently within my current role as lead DSN for an acute trust – I have helped to re-shape and develop the service from where it was when I started.  We run a nurse led service with a growing team of DSNs, some of which joined the team with little diabetes experience.

It has been a privilege to support and watch them grow within the speciality they love. Diabetes is now at the forefront of people’s minds throughout the Trust.  We are involved in staff education and healthcare promotion, sub-specialties such as antenatal, acute footcare and renal services and acute services. We still have a long-way to go, but I am sure the care of in-patients with diabetes has improved greatly because of this service which I feel is a huge achievement.

Your five-year-old daughter was diagnosed last year with type 1 diabetes, what happened?

I’d had my suspicions that Olivia was developing diabetes for quite some time – even years if I’m honest. I’d regularly check her urine for glucose and it was always negative. I spoke to a close friend and a colleague when she was three- years-old expressing my concerns. However, she had no overt symptoms.

She was often very grumpy and difficult. She would erratically wet the bed. She had recurrent tonsillitis and had a tonsillectomy which improved things a little, but not completely. There was nothing conclusive. Her growth and development were perfectly “normal”.

She started school in September 2015 – which she found extremely difficult. She became increasingly difficult to manage at home but again there was nothing specific. In mid January 2016 she developed a nasty cough and cold – and that was “it”.  It was like the switch had been turned on. The thirst, bed wetting and extreme grumpiness coupled with tiredness came.

But it was not as obvious as I would have thought my experience would have taught me. I put some of her symptoms down to her viral infection. I put off testing her for four days. I think I knew what it was going to show and I didn’t want it! I tested her urine again on Thursday, January 28, 2016.

I took her to my office to check her blood glucose.  It was 31.1mmols!!  My poor little girl – she must have felt so unwell. I chose not to take her to our local hospitals or the one at which I work – for many reasons. Mostly because I wanted her to go straight onto pump therapy. So I phoned a friend – and took her to their A&E.

It was the hardest day of my life.  When they attached her to the IV infusion I cried for hours. I knew that she’d be attached to insulin for the rest of her life.  It was a huge shock that diabetes had come into our lives so completely.

As a parent how did that change the way you approach your care to patients and also to your child?

In work – it has made me even more passionate (if that were possible!) than I was before. The desire to improve the care of people with diabetes for me is immense. It has to get better. I used to think that I was quite a “good” DSN. That I understood. But I really didn’t! Not until now.

The people and families that manage diabetes everyday deserve commendation. Not judgement or criticism. I cannot begin to imagine how a family manages the new diagnosis if they have no previous knowledge or understanding.  It must be so difficult to learn all the aspects that are needed. They have my upmost respect.

I would like to think I have become more compassionate and understanding when I deal with my patients. I also like to share with them some of my experiences and “real” knowledge – the bits that make a difference – the things that you only learn when you deal with it 24/7.

How has the diagnosis changed your life?

For some time I felt that diabetes had betrayed me. After so many years looking after “it”  and dedicating my life to “it” – I felt as though “it” had stabbed me in the back! Like it was a person or a being!

It has taken time for me to adapt and accept her diabetes. At times I’m not sure that I have!

The work and dedication that goes into looking after Olivia is immense. It is relentless. It doesn’t give you time off. It allows few errors.

I have had to significantly reduce my working hours and take a small step back from work. This has led to financial changes.  All of these things have a big impact on life – which takes time to adapt to. I considered leaving diabetes completely. However, it’s my professional love and I couldn’t stop doing diabetes!  It is ironically my personal hate now too – which is really strange!

I’m sure in time – the reason for this will become evident. Maybe it will give me the leverage to make more change. Allow me to spread the word within my profession about living with type 1. About how it really is and how as professionals we support people more constructively. I can only hope that some good can come out of her diagnosis – that it makes more sense.

Do you have any advice for parents with children diagnosed with diabetes?

Firstly – that it gets easier. On a day-to day basis – you learn to deal with new situations and challenges. You grow in confidence and you become expert in your child’s diabetes. It is easier to predict what may happen.

Sadly the wish that it would just go away, that your child could be free from the hard work – that doesn’t diminish.

Has your insight, experiencing diabetes first hand, helped your colleagues at work in any way?

My team would be better answering this I’m sure! I’m not sure it has helped them, but they have been amazing in the support they’ve shown me.

I remember one of the first PDSNs saying to me : “Remember. This could be so much worse. Diabetes is just a pain in the arse!”  That has stayed with me.  Diabetes is far from “just” a pain in the arse. It is a long-term health condition that demands constant attention. If not managed well – it causes devastating medical complications. If you get it “wrong” there are huge ramifications!

I would like all professionals to really consider their words before using them. There are courses to help develop skills to “deliver bad news”. I believe this should not be exclusive to Carcinoma patients only.

As a contrast – I feel that some of my wider professional community find it difficult to discuss. Many have not even asked me about Olivia and how we manage. I believe they find it uncomfortable to talk about with me. I also – at times feel sorry for the team that look after Olivia. I know it must be a challenge to have me as a mother of a child with diabetes! I challenge and ask lots of questions! I want her to be involved in new research and any new advances. I want her to be at the front of the queue!

I recall her pump start day – the day after diagnosis. The nurse didn’t know where to pitch the education. It must have been quite difficult I imagine.

What is the biggest challenge in the diabetes community as a parent?

There is a huge community of families with diabetes. It’s quite amazing and wonderful! The benefits of social media really come into their own with this type of thing. I have found it fascinating how people support one another – when they’ve never even met before. At first I was very active on many of the Facebook sites. I wanted to pull as much knowledge from people that have dealt with it for far longer.  I have also felt that it has given me a new platform to support people. There are often clinical questions that are asked – often late at or in the middle of the night. My clinical knowledge has enabled me to give advice on how to manage a particular event or problem.

We have attended a few diabetes get togethers. The first one – I found very difficult and emotional. It was difficult to be a parent of a child attending rather than a professional organising! I have learnt to adapt now and “try” to be just a mum. I have a temptation to get more involved with the organising and committee etc – however, I am reluctant too! I’ll watch this space!

What is the biggest challenge in diabetes care as a healthcare professional?

There are many! Education, education, education as one prime minister once said!! I am surprised and sadly disappointed about the level of knowledge non-speciaslits have in relation to diabetes. It is the biggest growing condition of our generation. One in five of our patients have diabetes. All healthcare professionals must have a greater understanding of the condition in order to care for people safely and effectively. It is my mission to increase diabetes knowledge locally. And who knows – maybe nationally!

How could managing diabetes in schools be made easier?

School management is not easy. Some schools fair better than others – however, it is so disproportionate! Care varies considerably. As does knowledge. Young children need extra support in schools purely for the diabetes – in order for them to perform to their potential. However, there are huge hurdles to overcome to access funding for support and it is an on-going battle for many parents like myself. EHCP’s are not focussed on health needs only – a child needs to be “failing’ educationally in order to access this level of support which is unfair and short-sighted. The demands of type 1 should not be a young child’s responsibility and should be taken away from them at school like it is at home.

A parent has the right to feel confident that their child is safe at all times whilst at school in addition to that child achieving academically.

What support is available out there for young people with the condition and how could it be improved?

There is a vast wealth of support available – accessing it is not always easy. I also feel that some professionals don’t always know what is available in order to gatepost families.

I have sourced much of the wider community myself. Obviously there are the bigger national bodies that are now available – however, it isn’t always easy to access such big events. And for youngsters like Olivia – the support is limited. She does enjoy meeting other children with diabetes. For her however, accessing her healthcare team is boring and stressful! I think clinics should be far more interactive and based around the agenda of the family rather than that of the team.

On the other hand – I think it’s easy to forget the other side of life. The non-diabetes support. Our family and friends have been amazingly supportive.

Olivia does the same things – if not more – than she did before. I am adamant that diabetes will not stop her doing anything – EVER!  She does Rainbows, gymnastics, swimming, football and mega sports. She is active and busy every day. She is amazing with her knowledge and bravery. She can enter information into her pump. Carb counts. Finger pricks. She is doing brilliantly at school and in her sports. She is truly inspirational and makes me so proud to be her mummy!