Clinical specialist physiotherapist Adine Adonis has just begun a prestigious NIHR doctoral clinical academic fellowship, which was awarded by the National Institute for Health Research (NIHR).
Thanks to the fellowship – which started in December 2024 – Adine, who works for Imperial College Healthcare NHS Trust in north west London, can complete her PhD and spend 20 per cent of her working week in a range of relevant clinical settings.
Adine’s study focuses on a progressive condition known as HTLV-1 Associated Myelopathy (HAM), which kills spinal cord nerves, including those that supply the leg muscles. She will join one HTLV-1 clinic a month in London, Manchester, Birmingham and York.
Adine hopes her research will influence how clinicians treat other rare diseases in the UK, encouraging a more collaborative approach with patients, using their goals and desired outcomes to guide treatment plans. Many patients affected by spinal cord inflammation are left unable to walk, with bladder, bowel and erectile dysfunction severely affecting their quality of life.
Imperial Health Charity funding
Adine’s research story features on the website of Imperial Health Charity, which provided a research fellowship to her in 2016-2017 that enabled her to investigate the use of a hand-held dynamometer to measure muscle strength in patients with HTLV-1 Associated Myelopathy (HAM).
The aim was to discover if the device could be used in clinical settings to identify muscle weakness sooner and provide treatment options to prevent further muscle and functional deterioration.
Adine said: ‘The research fellowship allowed me to have amazing conversations with patients. We talked about life, race, what it’s like living with HTLV-1, and why they decided to join the research. They felt someone saw value in hearing about their experience, and how they managed things.’
‘The research fellowship allowed me to have amazing conversations with patients. We talked about life, race, what it’s like living with HTLV-1, and why they decided to join the research.’ [Adine Adonis]
These conversations inspired Adine to pursue a pre-doctoral fellowship in 2021, in which she interviewed HTLV-1 patients to understand how health professionals could provide better support and improve patients’ quality of life.
She said: ‘The transcripts from the pre-doctoral fellowship show that the patients wanted the world and researchers to know what they were going through, and what areas they thought should be targeted.
‘It threw up a lot of questions about the way we run our consultations, and it highlighted that patient’s voices need to come through more strongly when it comes to managing their condition. You can see how and why things fall apart, and a lot of the time it’s because people don’t feel seen or heard.’
Adine’s findings led to a PhD proposal looking at which outcomes matter to people living with HTLV-1 and which tools provide the best measurements.
Find out more
- For more information on NIHR doctoral fellowships, see: https://www.nihr.ac.uk/career-development/research-career-funding-programmes/doctoral-fellowships
- If you work for Imperial College Healthcare NHS Trust and would like information on Imperial Health Charity’s research fellowships, see: https://www.imperialcharity.org.uk/nhs-staff-area/Apply-for-funding/Funding-for-research
- To read more about Adine’s research story, see: https://www.imperialcharity.org.uk/nhs-staff-area/Apply-for-funding/Funding-for-research/improving-outcomes-for-patients-with-spinal-cord-inflammation
