Michelle Small: Why I love my job as a Roald Dahl Nurse

March 15, 2017

Michelle Small has been a Paediatric Epilepsy Specialist Nurse for Roald Dahl’s Marvellous Children’s Charity since 2011. In her guest blog post, Michelle shares an insight into her role…

Roald Dahl Nurse Michelle Small

“I began to realise how important it was to be an enthusiast in life. If you are interested in something, no matter what it is go at it at full speed. Embrace it with both arms, hug it, love it and above all become passionate about it. Lukewarm is no good.” – Roald Dahl

I have been lucky enough to be a Roald Dahl Epilepsy Specialist Nurse since 2011 and I feel very privileged to have a job that I love.

Epilepsy can be a very complex, long term condition and having access to a specialist nurse is key to the quality of care for patients and families. It has been proven that having an epilepsy specialist nurse improves standards of care and quality of life, which all patients and families deserve.

Every day as a specialist nurse is different, bringing in new challenges and my role always involves me building upon my knowledge, learning new skills, meeting new people and being able to adapt depending on the needs of my patients and families.

An important part of my role is to increase awareness of epilepsy as there are still many misconceptions about the condition. Unfortunately, there is still a lot of stigma surrounding epilepsy and part of my role is about giving people the correct information and helping children realise that they can often lead a very normal life and achieve everything that they want regardless of their diagnosis. Because after all…“Somewhere inside all of us is the power to change the world” – Roald Dahl.

Myself and my colleague look after approximately 900 children on our caseload in Edinburgh and the Lothians and I feel that one of my main roles as a specialist nurse is to help empower my patients and families to live with their condition. I have known many of the families for many years and I speak to many of them on a weekly basis. This frequent contact has resulted in me building strong, honest and open relationships with many of them and I feel it is very important to be approachable to all families. For many of the families, I am the main point of contact and often act as the patients and families advocate. It may be that they ask my advice on something that I do not know the answer to but my role involves me finding out someone who does know!

My nurse specialist role covers a number of different areas. This includes supporting children and families with new diagnosis, giving advice face to face or by telephone, attending schools, providing teaching and support, attending clinics, developing new policies and guidelines, education, counselling, working within the multidisciplinary team and supporting families through the transition process. Not one day is the same in our office, which is great as it keeps me on my toes!

Over the last year, Roald Dahl’s Marvellous Children’s Charity and Explore Learning have provided a fantastic opportunity for a few of my patients. This has involved them receiving free maths and English tuition for not only themselves but also for their siblings. This has been an amazing opportunity as children with epilepsy can often have learning, memory and processing problems as a result of their condition. Many of my patients miss a number of days off school every year due to their epilepsy and having access to extra tuition can help with the worry and anxiety that comes with missing out on education.

The support that Roald Dahl’s Marvellous Children’s Charity provides to its nurses is invaluable and I feel very fortunate to be part of this fantastic charity. They always make their nurses feel very supported and appreciated and this is supported by their fantastic nurse training and development programme. The charity has been kind enough to support me in attending a number of conferences over the years, which has helped further my education and allowed me to learn about new information and up-to-date practice, which can help benefit all my patients and families.

I always want my patients to feel supported and I feel being a nurse specialist is about making a difference to my patients’ and families’ lives whether it is big or small. I feel the role’s importance is highlighted in a quote from one of my families… “If this post did not exist, our stress levels would absolutely rocket and it would be unthinkable”.

We are very proud to support Roald Dahl’s Marvellous Children’s Charity and the fantastic work they do to make life better for seriously ill children in the UK. You can read more about the amazing Roald Dahl Nurses here.

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