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“The COVID-19 pandemic has had a devastating impact on our income”

The Stroke Association has been campaigning to ‘save research’ after a “severe” drop in charitable income led to budget cuts. OT  explores the pandemic’s impact

stroke research

Throughout May, the Stroke Association has been campaigning to ‘save research’ after a drop in charitable income has led to a halving of its research budget. The charity has suggested the drop in funding could set back research, including in areas of vision care for stroke survivors.

In place of the charity’s annual Make May Purple campaign to raise awareness of strokes, the Stroke Association has instead led a new campaign – Save research. Rebuild lives – to highlight the effects of the pandemic on funding and research.

Rubina
Dr Rubina Ahmed, research director at the Stroke Association
Dr Rubina Ahmed, research director at the Stroke Association, told OT: “In the past, the Stroke Association has dedicated, on average, £2 million to research each year.”

“Our research programme is funded by voluntary donations and our fundraising activities have been hit by the COVID-19 pandemic,” Ahmed continued, describing the drop in income as “severe.”

She added: “As a result, we’ve had to halve our research budget.”

The charity is prioritising the completion of existing research awards and is campaigning for support to continue current research.

The Stroke Association is currently funding approximately 60 awards, with a total value of over £11.5m. Of these, five explore vision and stroke, with a value of approximately £1.12m.

Ahmed commented: “Stroke survivors depend on research to rebuild their lives, but the COVID-19 pandemic has had a devastating impact on our income and is threatening life-changing breakthroughs.”

As one of few charities dedicated to stroke research, particularly in rehabilitation, including research to support the role of community optometrists, innovation in this already under researched area could be setback

Dr Rubina Ahmed research director at the Stroke Association

Describing the potential impact the funding cuts could have for research, Ahmed explained that while stroke is a leading cause of adult disability, stroke research receives 1.2% (£30m) of public and charity spend. This is compared to 18.9% (£483m) for cancer and neoplasms, and 9.7% (£248m) for other neurological conditions.

She told OT: “As one of few charities dedicated to stroke research, particularly in rehabilitation and including research to support the role of community optometrists, innovation in this already under-researched area could be setback.

“The research funding crisis could affect important research studies, for example those that test new treatments to better support stroke survivors with vision problems, and allow healthcare professionals to offer better treatments in the future. Ultimately, this research is vital to improve daily life for stroke survivors, supporting them to live the best life they can.”

Going forwards under the current circumstances, the charity will be able to award funding for early career researchers (fellowships) but will pause funding for later stage researcher careers (lectureships) and awards for research addressing specific research questions (project grants).

“This difficult decision was guided by consultation with the stroke research community in the UK,” Ahmed said. “The charity remains committed to funding research and hopes to recover the funding in the coming years.”

Find out more about the personal impact of the pandemic from Elizabeth Manuel, a retired district judge who suffered sight loss following a stroke at the age of 46, and who shared her story of struggling to access supermarket delivery slots while isolating during the first national lockdown.


OT asks: The knock-on effects of the pandemic on research

Dr Christine Hazelton, research fellow and optometrist at the Nursing, Midwifery and Allied Health Professionals (NMAHP) Research Unit at Glasgow Caledonian University, is carrying out research on improving care services for stroke survivors with visual impairment. OT asked Hazelton about the research and how it had been affected by the pandemic.  

How has the pandemic affected your research?

Christine
Dr Christine Hazelton, research fellow and optometrist at the NMAHP Research Unit in Glasgow Caledonian University
Dr Christine Hazelton (CH): My projects often explore vision care within stroke settings. For one project, many of the researchers were pulled from acute stroke wards into providing direct COVID-19 care or helping to support COVID-19 services, such as organising personal protective equipment supplies.

Face-to-face data collection stopped immediately. For one study, we’ve not been able to restart that yet. The British Library closed, which had a huge impact on a large review project I'm leading, as it meant we could not access papers for months.

Although a majority of research has been held back, there have been opportunities to adapt. For example, another study collecting qualitative data moved to doing the interviews either on the phone, or online. This has worked really well, and meant we could reach stroke survivors across a larger geographic area.

Personally, it has shown me the value of working with the people in my unit, who come from lots of different backgrounds, including occupational therapists, psychologists, nurses, physiotherapists, speech and language therapists, and statisticians. I have missed getting their different perspectives, and the problem-solving ability and creativity in that environment.

Why is this research so important for stroke care, and what implications could it have for optometrists in primary care?

CH: Visual problems affect at least one fifth of stroke survivors, and vision loss has a huge impact on an individual’s daily life, affecting everyday practical skills, social activities and family life, as well as an emotional toll. It is a hidden disability, and not a well-known effect of stroke – stroke survivors struggle with a lack of understanding from friends, family and colleagues.

Visual problems affect at least one fifth of stroke survivors, and vision loss has a huge impact on an individual’s daily life

Dr Christine Hazelton, research fellow and optometrist at NMAHP Research Unit in Glasgow Caledonian University

There is huge variability in services across the UK, with visual problems often neglected compared to other stroke-related impairments. There is very little research into this area, so clinicians do not have the evidence to inform their practice or change their services.

Could your research take on new significance for optometrists following the pandemic?

CH: My research is about improving care for stroke survivors with vision problems; making sure they are assessed fully and receive the most effective interventions. Clinically a big part of this is making sure there are good links between vision services and stroke care. The COVID-19 pandemic has highlighted that these links do not work perfectly, and there can be numerous barriers for people to access the right services.

For optometrists, this means we may see more stroke survivors, and have greater opportunity to provide care ourselves, or signpost them to the right local specialist so individuals are not struggling to source the right treatment. Hopefully my research and training can support optometrists in this – so they can assess, manage and provide really clear information to our stroke patients.