“It’s really important to believe in yourself and put yourself out there,” Claire Adams tells me. The specialist rare disease nurse — more specifically, the specialist severe insulin resistance and diabetes nurse, and senior research nurse — speaks from personal experience.
Ms Adams works with rare diseases, primarily lipodystrophy. I, a lacking-experience-with-rare-diseases journalist, asked Ms Adams, a full-of-experience-with-rare-diseases nurse, what exactly lipodystrophy is. I can tell she enjoys sharing what she knows. Lipodystrophy is a rare condition characterised by a lack of fats, she tells me. Due to the lack of fat storage, capacity fat gets stored in places such as the muscles and liver. This leads to severe metabolic problems, including insulin resistance, type 2 diabetes, fatty liver and dyslipidaemia. The lack of fats also has an effect on appearance, and treatments for the condition are limited.
Working with lipodystrophy, severe insulin resistance and other rare diseases has provided her with insight on how to better treat each patient by not only seeing what works, but by also seeing what hasn’t yet been addressed.
“I recently did my masters in clinical research, which included my own research study,” she says. “The things we know and are continuing to research relate to diagnosing the conditions and managing metabolic problems — something that hadn’t yet been addressed is the mental health and psychological aspects.
Ms Adams knew that some patients didn’t feel supported with the effects the condition had on appearance and that many had a negative body image, so she focused her study on the psychological aspect of patients with lipodystrophy. The results proved this initial hypothesis to be true.
On the strength of this research, she was awarded a bursary to develop a programme of support to help patients with lipodystrophy and negative body images. Once the programme has been implemented, Ms Adams says she hopes to take what she learns and study for a PhD.
But it was the roles she held when she first qualified as a nurse that led Ms Adams to her current work with rare diseases. She qualified in 1999 and began working in a research role related to oncology in 2003. She then started working as a research nurse in metabolic science.
“That kind of opened up my eyes to lipodystrophy and rare diseases,” she says. “It was the research that originally attracted me, but the past few years it’s been the rare diseases and what isn’t being done that’s held my interest.”
In addition to her clinical work and research, Ms Adams is part of the Empowerment Advisory Committee for a rare-disease charity called Findacure. The organisation focuses on building patient communities, driving research and developing treatments for those who have rare diseases. To Ms Adams, straying from a typical clinical role was important for her to do.
“Don’t confine yourself just to the clinical environment, nurses have things to offer outside the clinical community,” Ms Adams says.
As a nurse, Ms Adams brings a new perspective to Findacure. Her experience allows her to provide a more clinical perspective to the group. But, conversely, she also says that being a member of the Empowerment Advisory Committee expands her thinking in other areas.
“It helps me care for patients with rare diseases from a non-clinical setting,” she tells me. “It gives me a different kind of perspective. I think nurses have a varying range of skills, and we should utilise them.”
Allowing herself to take risks and put herself out there was the biggest lesson Ms Adams says she’s learned throughout her career, and she’s proof this mindset works.
“You’ve just got to put yourself out there, and most of the time, people want to help,” she says. “And I don’t think I did that in the first place, actually,” Ms Adams says, knowing that it can be intimidating to stray from your comfort zone.
But earning her master’s degree, bursary and various roles in new groups, such as Findacure, has allowed Ms Adams to gain the confidence she says she needed.
“You have got to put yourself out there,” she tells me again. “If you believe in something, then I think you should take it forward.”
Find out more about Findacure: http://www.findacure.org.uk/
How do I get to be you?
- Firstly, ask yourself what you’re interested in. What is it you’re passionate about? Are there unanswered questions in your area of work? What could you do about them?
- Spend time listening to the patients you’re working with. It may be their priorities differ from those of the healthcare team, is there something you could do to improve patient care/quality of life?
- Are there difficulties that your patients face in the non-clinical environment? Link up with patient charities in your area of interest. Maybe you could offer help and/or advice behind the scenes?
- Find experts in the area you are interested in and don’t be afraid to ask for help, in my experience people have often been keen to help. If people cannot help they may be able to sign post to you to someone who can.
- If you are interested in conducting your own research why not look at the Clinical Academic Programme for non-medical healthcare professions offered by the NIHR: http://www.nihr.ac.uk/funding-and-support/funding-for-training-and-career-development/training-programmes/nihr-hee-ica-programme/
- Are you interested in helping people with rare diseases? Patient groups for condition specific rare diseases are often small, find out if there are any patient groups located near you. There is often a lack of support from healthcare professionals for patients with rare disease so they may be keen to have someone with clinical experience involved.
- If you have an idea but are lacking support and finance to take it forward, keep a look out for opportunities such at the Patients Programme (awarded by the Foundation of Nursing Studies and The Burdett Trust https://www.fons.org/programmes/patients-first) which offer support and a bursary to support you.