Date: 20 August 2019
Diane Sellers is a shining example of an allied health professional (AHP) that has used her experience in clinical practice to propel her into an area of research that she is passionate about. Diane Sellers is a Speech and Language Therapist (SaLT) for Sussex Community Trust NHS Trust and an AHP Research Champion for the National Institute for Health Research (NIHR) and Council for Allied Health Professions Research (CAHPR).
Diane tells us how she started her research career and why it is vital AHPs devise and deliver health and social care research. Diane says: “I’ve been working as a Speech and Language Therapist for children with complex neurological conditions since 1990 and in the early 2000s I started working at Chailey Clinical Services, part of Sussex Community NHS Trust.
Chailey is a specialist community service for children and young people with complex neurological conditions. Diane was fortunate that the organisation conducted research. The research department was run by Terry Pountney, a research active physiotherapist. Terry held a small amount of funding to pump prime larger research funding applications. Diane says: “Receiving funding from the organisation you work for is critical because it demonstrates they believe research is important. It also means there is a possibility to receive larger scale grants from other organisations as they see the endorsement by your employer.”
Diane’s journey into research began with an idea back in 2008. Diane says: “It all started with a professional disagreement with colleagues working together in the nutrition team. We could not agree about how best to describe the eating, drinking and swallowing difficulties of children with neuro-developmental difficulties, particularly Cerebral Palsy (CP). The disagreement highlighted questions that needed an answer.
“I was always aware that I wanted to conduct research but when I started out it seemed that to have a research career you stayed at University and you left to do a clinical practice as a SaLT. University research seemed to be whatever was of interest to the academic and not necessarily what was going to be of benefit to patients and service users.
“The NIHR has brought the two strands of academic research and clinical practice together in a hugely powerful way. This is exciting for everyone who works in health. I think that is a core message of the NIHR that the research activity they choose to fund needs to be of demonstrable benefit to patients. With this realisation concerning NIHR research funding I felt able to revisit my interest in research in a clinical context.
Diane explained: “I spoke to Terry about the potential idea to develop a classification system to describe eating and drinking abilities in children with CP. A classification system would help address the lack of clarity in this area. She supported the idea and was able to give me a small amount of money to backfill my time to write a funding application to NIHR Research for Patient Benefit (RfPB). We were awarded the money in 2010.”
The research project produced a new Eating and Drinking Ability Classification System (EDACS) which describes the full range of eating and drinking ability in five distinct levels for people with cerebral palsy from the age of three years, including assistance required at mealtimes.
Diane explains the stages of the research: “For the first stage we ran a series of seven face-to-face group discussions where we linked up with 56 professionals and parents in London, Manchester, Exeter, Newcastle and Sussex. At each of the groups we discussed and revised the EDACS draft.
“The EDACS draft went to a second stage. This was a Delphi Survey, a method used to find consensus or agreement among a large group of people who do not meet each other face-to-face. It included 95 experts, a mixture of clinicians, parents and young people with CP who all commented on EDACS. We continued to make changes until 80% of these experts agreed with the content of EDACS. It took two rounds for sufficient people to agree.
“In the final stage we tested the reliability of EDACS. EDACS was used by pairs of SaLTs to classify the eating and drinking abilities of 100 children with CP that they both knew well, to examine whether they agreed on the levels of ability. SaLTs were selected because they assess and manage the eating and drinking difficulties linked to CP most frequently. We also compared the way that parents and SaLTs used EDACS to classify 48 children’s eating and drinking ability.
The take-up of EDACS was good. Diane advised that: “The research community took up the results of the research quickly. Some of the specialist centres took it up because they had read journals and attended conferences – it has been more slowly adopted by less specialist services although this is changing. .
“The study was published in a journal called Developmental Medicine and Child Neurology in 2014. We now have 29 translations of EDACS that are either complete or in mid-process and we have developed Mini EDACS for children aged between 18 months and three years old”.
“From having had one idea working in Sussex I have been invited to talk about EDACS around the UK and internationally. I’ve spoken regularly at the London Paediatric Dysphagia Clinical Excellence Network. In October 2018 I was a keynote speaker at the American Academy for Cerebral Palsy and Developmental Medicine. A medical feed company has invited me to speak around the county on their road shows and they picked up EDACS quickly and have been very supportive.”
Diane’s pride in the EDACS study is self-evident. She also feels that the research study helped her develop significantly as a professional. Diane expressed how she had to learn on the job, having only had a small amount of research experience during her Masters as her degree was not research based. The research study, along with a PhD she was working towards at the same time, helped her develop her critical thinking skills and shifted her ability to think more broadly, from clinical problem solving to thinking on a larger scale. All of this she found hugely rewarding. Diane says: “If you are doing research you are stepping out into the unknown, research means you are navigating unknown territory. You are pushing into areas that people do not have any idea about. As a clinician you have a pretty good hunch about what is needed to improve clinical practice, and this is where clinical academics are really important.
“I am passionate about promoting research among AHPs. I am a voluntary research champion for the NIHR and CAHPR for Kent, Surrey and Sussex and in this role I connect up AHPs in the region to make them aware of and become involved in health and social care research, devising and delivering research based on their clinical practice. I am linking up with the two CAHPR hubs in Kent, Surrey and Sussex and I’m organising an event for the autumn to get AHPs together to network and learn from each other.
Below Diane gives us other reasons why AHPs should get involved in research.
Why should AHP’s get involved in research?
Diane’s story is one example of the success and reward a research study can reap but the opportunities and ideas that can be generated by healthcare professionals and AHPs in particular, are infinite.
For more information about AHPs and research, go to https://www.nihr.ac.uk/health-and-care-professionals/career-development/