Tag: research

New research into treatment and diagnosis of long COVID

15 new studies across the UK will expand research into long COVID to support thousands of vulnerable people, backed by nearly £20 million through the NIHR

  • 15 new studies across UK to expand research that will support thousands of vulnerable people
  • Nearly £20 million for research projects will help improve understanding of long COVID and identify effective treatments
  • Projects include the largest long COVID trial to date which will involve over 4,500 people

Thousands of people suffering with long COVID will benefit from new research programmes backed by £19.6 million to help better understand the condition, improve diagnosis and find new treatments.

An extensive programme of 15 new research studies, backed by government funding through the National Institute for Health Research (NIHR), will allow researchers across the UK to draw together their expertise from analysing long COVID among those suffering long-term effects and the health and care professionals supporting them.

The latest research shows that although many people make a full recovery following COVID-19, a significant proportion of people continue to experience chronic symptoms for months. These ground breaking studies aim to help those people affected return to their normal lives.

The projects will focus on:

  • Better understanding the condition and identifying it
  • Evaluating the effectiveness of different care services
  • Better integrating specialist, hospital and community services for those suffering with long COVID
  • Identifying effective treatments, such as drugs, rehabilitation and recovery to treat people suffering from chronic symptoms
  • Improving home monitoring and self-management of symptoms, including looking at the impact of diet, and
  • Identifying and understanding the effect of particular symptoms of long COVID, such as breathlessness, reduced ability to exercise and brain fog

Health and Social Care Secretary, Sajid Javid, said: “Long COVID can have serious and debilitating long term effects for thousands of people across the UK which can make daily life extremely challenging.

“This new research is absolutely essential to improve diagnosis and treatments and will be life-changing for those who are battling long-term symptoms of the virus.

“It will build on our existing support with over 80 long COVID assessment services open across England as part of a £100 million expansion of care for those suffering from the condition and over £50 million invested in research to better understand the lasting effects of this condition.”

Professor Nick Lemoine, Chair of NIHR’s long COVID funding committee and Medical Director of the NIHR Clinical Research Network (CRN), said: “This package of research will provide much needed hope to people with long-term health problems after COVID-19, accelerating development of new ways to diagnose and treat long COVID, as well as how to configure healthcare services to provide the absolute best care.

“Together with our earlier round of funding, NIHR has invested millions into research covering the full gamut of causes, mechanisms, diagnosis, treatment and rehabilitation of long COVID.”

The selection process for this broad range of innovative studies into long COVID involved people with lived experience at every stage and their input has been invaluable in shaping the outcome of this call and the research projects which will receive funding.

The projects include:

  • STIMULATE-ICP at University College London which will be the largest long COVID trial to date, recruiting more than 4,500 people with the condition. With £6.8 million of funding, the project will test the effectiveness of existing drugs to treat long COVID by measuring the effects of 3 months’ treatment, including on people’s symptoms, mental health and outcomes such as returning to work. It will also assess the use of MRI scans to help diagnose potential organ damage, as well as enhanced rehabilitation through an app to track their symptoms.
  • The immunologic and virologic determinants of long COVID at Cardiff University with nearly £800,000, which will look at the role of the immune system in long-term disease and whether overactive or impaired immune responses could drive long COVID by causing widespread inflammation.
  • ReDIRECT at University of Glasgow backed by nearly £1 million, which will assess whether a weight management programme can reduce symptoms of long COVID in people who are overweight or obese.
  • LOCOMOTION at University of Leeds with £3.4 million, which focuses on identifying and promoting the most effective care, from accurate assessments in long COVID clinics to the best advice and treatment in surgeries, as well as home monitoring methods that can show flare-ups of symptoms. The research aims to establish a gold standard of care that can be shared across England and the rest of the UK.
  • EXPLAIN at University of Oxford backed by £1.8 million, which will seek to diagnose ongoing breathlessness in people with COVID-19 who were not admitted to hospital, using MRI scans to trace inhaled gas moving into and out of the lungs to assess their severity and whether they improve over time.

UK Government Minister for Scotland Iain Stewart said: “Long Covid is a terrible illness affecting thousands of people across the UK, and as it’s such a new disease, there’s still a lot we don’t know about it.

“This UK Government funding, which is supporting studies led by the University of Glasgow and University of the West of Scotland, will help us make progress in understanding long Covid and hopefully improve treatment and support for patients right across the UK.”

Professor Amitava Banerjee, Associate Professor in Clinical Data Science and Honorary Consultant Cardiologist, University College London, Chief investigator of the STIMULATE-ICP (Symptoms, trajectory, inequalities and management: understanding long COVID to address and transform existing integrated care pathways) trial, said: “Individuals with long COVID have long been asking for recognition, research and rehabilitation.

“In our two-year study across six clinical sites around England, we will be working with patients, health professionals, scientists across different disciplines, as well as industry partners, to test and evaluate a new ‘integrated care’ pathway from diagnosis to rehabilitation, and potential drug treatments in the largest trial to-date.

“We will also be trying to improve inequalities in access to care and investigating how long COVID compares with other long-term conditions in terms of use of healthcare and burden of disease, which will help to plan services.”

Dr Dennis Chan, Principal Research Fellow, Institute of Cognitive Neuroscience, University College London, Chief investigator of the CICERO (Cognitive Impairment in long COVID: PhEnotyping and RehabilitatiOn) project, said: “Cognitive impairment, referred to informally as ‘brain fog’, is a major component of long COVID that compromises people’s daily activities and ability to return to work.

“The aim of this study is twofold; first, to understand better the nature of this ‘cognitive COVID’ in terms of the cognitive functions affected and the associated brain imaging changes, and second, to test whether neuropsychological rehabilitation can improve people’s outcomes.

“If this study is successful we will not only understand much better the way in which COVID affects the brain but also provide NHS services with new tools to help people recover from their cognitive difficulties.

Professor Fergus Gleeson, Professor of Radiology and Consultant Radiologist, Oxford University, Chief Investigator of EXPLAIN (HypErpolarised Xenon Magnetic Resonance PuLmonary Imaging in PAtIeNts with Long-COVID) project, said: “Following on from our earlier work using hyperpolarised xenon MRI in patients following hospitalisation with COVID-19 pneumonia, where we showed that their lungs may be damaged even when all other tests were normal, it is critical to determine how many patients with long COVID and breathlessness have damaged lungs, and if and how long it takes for their lungs to recover.

“Hyperpolarised xenon MRI is a safe scanning test that requires the patient to lie in the MRI scanner and breathe in one litre of the inert gas xenon that has been hyperpolarised so that we can see it using MRI.

“The scan takes a few minutes and does not require radiation exposure, so it may be repeated over time to see lung changes. Using this technique, we can see the xenon – which behaves in a very similar way to oxygen – move from the lungs into the blood stream.

“In this way, we can see if there has been damage to the airways in the lungs, or to the areas where oxygen crosses into the blood stream, which appears to be the area damaged by COVID-19.”

Background information

  • The projects were funded following a UK-wide research call for ambitious and comprehensive research into understanding and addressing the longer term physical and mental health effects of COVID-19 in non-hospitalised people and will build on the existing research already commissioned to look at long COVID.
  • In February 2021, 4 projects funded by NIHR and UK Research and Innovation (UKRI) were announced, following the first research call.
  • The UK began the commissioning of long COVID research in 2020 and some projects are already producing results that are informing the understanding of long COVID. This research call adds to the existing investment of over £30 million of research funding taking the total investment to £50 million.
  • The National Institute for Clinical Excellence (NICE) has issued official guidance on best practice for recognising, investigating and rehabilitating patients with long COVID. According to NICE guidance, ‘long COVID describes signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).’
  • In October 2020, NHS England and Improvement launched a 5 point plan for long COVID. There are now 89 specialist post COVID-19 clinics operating in England.
  • On 15 June 2021, NHSEI published a new 10 point plan and announced an additional £100 million expansion of care for patients with long COVID.

Study summaries

Developing and testing the best ways to diagnose, treat and provide rehabilitation for people with long COVID

Dr Amitava Bannerjee, University College of London – £6.8m

The wide-ranging symptoms of long COVID are debilitating and need coordinated care from specialists, hospitals and community services. The STIMULATE-ICP (Symptoms, trajectory, inequalities and management: understanding long COVID to address and transform existing integrated care pathways) trial, developed with the help of patient organisations, will be the largest long COVID trial to date, recruiting more than 4,500 people with the condition. This project will test the efficacy of existing drugs to treat long COVID, and measure the different effects of three months’ treatment on patients with regards to their symptoms, mental health and outcomes such as returning to work. It will also assess the use of MRI scans to help diagnose potential organ damage in those recovering from the coronavirus, as well as enhanced rehabilitation – the provision of joined-up specialist care centred around an app for patients allowing them to track their symptoms.

Optimising standards of care for long COVID in hospitals, doctors’ surgeries and at home

Dr Manoj Sivan, University of Leeds – £3.4m

Although there are 83 long COVID clinics in England, most people have not had access to them, and face long waiting times to be seen. The LOCOMOTION (long COVID multidisciplinary consortium: optimising treatments and services across the NHS) project focuses on identifying and promoting the most effective care, ranging from accurate assessments in these clinics to the best advice and treatment in surgeries, as well as home monitoring methods that can show flare-ups of symptoms. Drawing from the experiences of current long COVID patients and NHS professionals, the research aims to establish a ‘gold standard’ of care that can be shared across England and the rest of the UK. Analysis will be conducted in 10 long COVID clinics, at home and in doctors’ surgeries, and the study will track referrals and evaluate different services through patient interviews to make sure they are efficient, accessible and cost-effective. Specialists in healthcare inequality will also ensure that views are sought and recorded from people who are not visiting clinics.

Explaining why long COVID patients experience breathlessness and a reduced ability to exercise

Professor Fergus Gleeson, University of Oxford – £1.8m

One of the most prevalent and persistent symptoms among long COVID patients has been discomfort in breathing following physical activity. The EXPLAIN (Hyperpolarised xenon magnetic resonance pulmonary imaging in patients with Long-COVID) project will seek to diagnose ongoing breathlessness in coronavirus patients who were not admitted to hospital, using MRI scans to trace inhaled gas moving into and out of the lungs.

A 15-minute scan using low levels of xenon gas will display lung function and – if abnormalities are found – comparisons of data across different groups of participants recruited from Oxford and Sheffield can help assess their severity and whether they improve over time. Some EXPLAIN patients will also have a separate scan to see if heart damage can be identified. If the MRI scans separate patients with and without lung disease, further CT scans can be analysed, using artificial intelligence and blood samples to identify associated conditions and inform the development of treatments.

Understanding and treating ‘brain fog’

Dr Dennis Chan, University College London – £1.2m

Up to three quarters of people who experience long-term symptoms after COVID-19 report problems with memory, attention or other cognitive functions – symptoms known collectively as ‘brain fog’. The CICERO (Cognitive Impairment in long COVID: PhEnotyping and RehabilitatiOn) project will first determine which elements of brain function are most affected in people with long COVID. The relationship between brain function and other symptoms of long COVID, such as fatigue and anxiety, will be explored, and MRI scanning will be used to identify the affected brain networks. The researchers will then develop and test a new rehabilitation strategy to help people recover from the cognitive aspects of long COVID and return to normal life and working ability. This will support production of a freely available COVID-19 Cognitive Recovery Guide on how best to offer the new rehabilitation approach depending on the patient’s symptoms.

Co-designing personalised self-management for patients at home

Professor Fiona Jones, Kingston University – £1.1m

Long COVID describes more than 200 different symptoms that can interact and fluctuate. Although fatigue and problems with brain function are the most common symptoms, each patient can experience a different set of symptoms. The LISTEN (Long COVID Personalised Self-managemenT support – co-design and EvaluatioN) project will work in partnership with people who have long COVID to design and evaluate a package of self-management support that can be personalised to individual needs. The researchers will first work with people living with or recovered from long COVID, plus a social enterprise with expertise in reaching seldom heard populations, to design the package and associated patient and training resources. The team will then test the self-management package alongside up to six one-to-one virtual coaching sessions from trained rehabilitation practitioners, to test whether the treatment improves how people with long COVID feel and how they cope with everyday activities. The researchers will also evaluate how the package could be implemented more widely, with the aim that self-management for people with long COVID can be delivered at scale.

ReDIRECT: Remote Diet Intervention to Reduce long Covid symptoms Trial

Dr David Blane, University of Glasgow – £999,679

The immunologic and virologic determinants of long COVID

Professor David Price, Cardiff University – £774,457

Quality-of-life in patients with long COVID: harnessing the scale of big data to quantify the health and economic costs

Dr Rosalind Eggo, London School of Hygiene and Tropical Medicine – £674,679

Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue (PAuSing-Post-COVID Fatigue)

Dr Mark Baker, Newcastle University – £640,180

Immune analysis of long COVID to inform rational choices in diagnostic testing and therapeutics

Professor Daniel Altmann, Imperial College – £573,769

Understanding and using family experiences of managing long COVID to support self care and timely access to services

Professor Sue Ziebland, University of Oxford – £557,674

Development of a robust T cell assay to retrospectively diagnose SARS-CoV-2 infection and IFN-γ release assay as diagnostic and monitoring assay in Long COVID patients

Dr Mark Wills, University of Cambridge – £372,864

Using Activity Tracking and Just-In-Time Messaging to Improve Adaptive Pacing: A Pragmatic Randomised Control Trial

Professor Nicholas Sculthorpe, University of the West of Scotland – £317,416

Impact of COVID-19 vaccination on preventing long COVID: a population-based cohort study using linked NHS data

Professor Daniel Prieto-Alhambra, University of Oxford – £224,344

Long COVID Core Outcome Set (LC-COS) project

Dr Tim Nicholson, King’s College London – £139,619

University study identifies genes linked to severe Covid-19 risk

An international group of scientists have discovered 13 DNA sequences that are associated with people developing the most severe form of Covid-19.

The identification of the sequences – known as genetic markers – could provide targets for future therapies using repurposed drugs, experts say.

A graphical representation of DNA with coronavirus floating around it

Researchers from the University of Edinburgh joined a global effort to compare the genetic information of almost 50,000 Covid-19 patients with samples provided by healthy volunteers from biobanks, clinical studies, and direct-to-consumer genetic companies like 23andMe.

The team found key differences in 13 genetic markers of Covid-19 patients compared with healthy volunteers. The genes partially explain why some people become seriously ill with Covid-19, while others are not affected.

By pooling the large amount of data from 25 countries, the scientists were able to produce robust analyses more quickly, and from a greater diversity of populations, than any one group could have on its own.

The team also identified factors such as smoking and high body mass index as reasons why some people suffer from Covid-19 more acutely.

Of the 13 genetic markers identified so far, two occur more often among patients of East Asian or South Asian ancestry than in those of European ancestry.

One of these two markers, near the FOXP4 gene, is linked to lung cancer. The different FOXP4 sequence associated with severe Covid-19 increases the gene’s expression, suggesting that inhibiting the gene could be a potential treatment strategy, experts say.

Other genetic markers associated with severe Covid-19 included DPP9, a gene also involved in lung cancer and pulmonary fibrosis, and the TYK2 gene, which is implicated in some autoimmune diseases.

The latest findings come from the COVID-19 Host Genomics Initiative, which have been published in Nature.

The initiative has grown to be one of the most extensive collaborations in human genetics and currently includes more than 3,300 researchers and 61 studies from 25 countries.

The University of Edinburgh led study GenOMICC (Genetics of Susceptibility and Mortality in Critical Care) is one such project that contributed data to the COVID-19 Host Genomics Initiative.

GenOMICC started in 2015 as an open, global consortium of intensive care clinicians dedicated to understanding genetic factors that influence outcomes in intensive care from diseases such as SARS, influenza and sepsis.

Throughout the pandemic it has been focused on Covid-19 research in partnership with Genomics England.

Researchers will continue to identify additional gene regions associated with infection and severe disease, and will begin to study what factors lead symptoms persisting in some patients for months.

GenOMICC is funded by the charity Sepsis Research FEAT, the Intensive Care Society, Wellcome, UK Research and Innovation, Scotland’s Chief Scientist Office, the Department of Health and Social Care and the National Institute for Health Research.

Dr Kenneth Baillie, GenOMICC’s chief investigator and Academic Consultant in Critical Care Medicine and Senior Research Fellow at University of Edinburgh’s Roslin Institute, said: “By working together across the whole world, we are able to accelerate discovery for the benefit of patients.

“This new international analysis builds on the colossal effort made by patients and intensive care research teams across the whole UK in the GenOMICC study.”

Picture (top): kirstypargeter via Getty Images

One million children in key worker households live in poverty

New research published by the TUC (produced by Landman Economics) finds that over a million children of key workers are currently living in poverty.

The research, which used the government definition for key workers, found that in some regions more than a quarter of children in key worker households are living in poverty.

Key worker families in the North East have the highest rate of child poverty (29%), followed by London (27%), the West Midlands (25%) and Yorkshire and the Humber (25%).

Government policies could worsen key worker poverty

The TUC says the main reasons for key worker family poverty are low pay and insecure hours – factors that often coincide in occupations such as care workers, delivery drivers or supermarket staff.

High housing costs further reduce keyworker family budgets for essentials like groceries and utility bills. And support through Universal Credit is not enough to guarantee families avoid poverty.

Current government policies are likely to increase child poverty rates. Ministers have capped pay rises for key workers in the public sector, which in some cases will mean real wage losses. And the chancellor is planning to cut Universal Credit for low-income families by £20 per week in October.

The TUC warns that these policies will put the brakes on the nation’s economic recovery by curbing household spending. This will restrain business activity, and impact on wage growth for other workers across the economy.

TUC General Secretary Frances O’Grady said: “Every key worker deserves a decent standard of living for their family. But too often their hard work is not paying off like it should. And they struggle to keep up with the basic costs of family life.

“The prime minister has promised to ‘build back fairer’. He should start with our key workers. They put themselves in harm’s way to keep the country going through the pandemic. Now, we must be there for them too.

“This isn’t just about doing right thing by key workers. If we put more money in the pockets of working families, their spending will help our businesses and high streets recover. It’s the fuel in the tank that our economy needs.”

Support needed for key worker families

The TUC is calling on the government to guarantee decent living standards for key worker families by:

  • Raising the national minimum wage to £10 per hour immediately.
  • Ending the freeze on public service workers’ pay and give all public service workers a decent pay rise.
  • Funding the public sector so that all outsourced workers are paid at least the real Living Wage and get parity with directly employed staff.
  • Canceling the £20 cut to Universal Credit, which is set to hit low-income families in October, and set out plans to increase child benefit above inflation each year across the parliament.

– Children in poverty in key worker households by UK nation and region

RegionChildren in poverty in key worker familiesProportion of children in poverty in key worker families
North East56,19829.1%
North West101,48118.1%
Yorks & the Humber100,21424.9%
East Midlands80,65321.2%
West Midlands111,57725.2%
East of England83,71915.5%
London164,54826.5%
South East143,37218.7%
South West66,67815.6%
Wales60,37823.4%
Scotland74,37618.7%
TOTAL1,062,58620.6%

Research highlights challenges for Scotland’s unpaid carers and carer support workers during pandemic

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Carers Trust Scotland today is releasing research about the experiences of the pandemic among unpaid carers and carer service support workers across Scotland. More than 500 participants shared the challenges of caring, and supporting unpaid carers, throughout the pandemic.

The pandemic has been difficult for unpaid carers, with 90% of respondents stating they are spending more time caring and 82% saying they have had no respite since the beginning of the pandemic.

With lockdowns and restrictions, many unpaid carers have been unable to share the responsibilities with family and friends and many services have had to pause or reduce their input.

These challenges also impact those carer service workers supporting unpaid carers. As other services paused, 76% of carer support workers that participated found their workload increased. 65% say that their job role has changed, as delivery of support moved online.

Carer support workers highlighted the emotionally demanding calls from unpaid carers, and the challenges of taking these calls in a home working environment without the support of colleagues that you would have in an office.

Hannah Martin, Research and Engagement Officer for Carers Trust Scotland, said: “The pandemic has been a very challenging time for both unpaid carers and carer support workers.

“The challenges unpaid carers have faced, have directly impacted those supporting them. Through the lived experience of unpaid carers and carer support workers, this research illuminates those challenges throughout this unprecedented time.”

In addition to providing an evidence base of experiences, the research puts forward recommendations and suggestions to support carer services and staff as they move out of the crisis phase of the pandemic. This includes recognising and valuing the incredible contribution of unpaid carers, and carer support workers over the pandemic period.

World-leading researcher on unpaid carers’ rights and Carers Trust Ambassador, Professor Saul Becker, said: “During the pandemic, unpaid carers of all ages, have been spending more time caring and more people than ever before have taken on unpaid caring responsibilities while statutory and other support services have been reduced or not available.

“This has also added additional pressures on carer support services that have had to adapt their practices quickly and provide holistic support to unpaid carers during very challenging circumstances.

“I welcome this COVID-19 in Scotland impact report on unpaid carers and carer service workers and believe every effort should be made to support the implementation of the report recommendations and suggestions, which could further improve the lives of unpaid carers and recognise and value the vital role of carer support services.”

Mental Wellbeing and Social Care Minister Kevin Stewart, said: “Carers, and the services that support them have done a remarkable job in very difficult circumstances over this past year during the pandemic. I want to thank them for all their hard work and effort.

“During the pandemic, we have invested an additional £1.9 million in extra carer support via carer organisations. The Scottish Government continues to work closely with the Carers Trust and national care organisations to ensure that carers continue to receive the support and the services they rely on. We will continue to do so as we move into a new phase of the pandemic and society starts to open up.

“The Scottish Government is committed to establishing a National Care Service by the end of this parliament to oversee the delivery care, invest in better terms and conditions for the workforce and provide better support for unpaid carers.”

Life could exist in the clouds of Jupiter, says new study

Jupiter’s clouds have water conditions that would allow Earth-like life to exist, but this isn’t possible in Venus’ clouds, according to the groundbreaking finding of new research led by a Queen’s University Belfast scientist. 

For some decades, space exploration missions have looked for evidence of life beyond Earth where we know that large bodies of water, such as lakes or oceans, exist or have previously existed. However, the new research shows that it isn’t the quantity of water that matters for making life viable, but the effective concentration of water molecules – known as ‘water activity’. 

The new study also found that research published by an independent team of scientists last year, claiming that the phosphine gas in Venus’ atmosphere indicates possible life in the sulphuric acid clouds of Venus, is not plausible. 

Through this innovative research project, Dr John E. Hallsworth from the School of Biological Sciences at Queen’s and his team of international collaborators devised a method to determine the water activity of atmospheres of a planet. Using their approach to study the sulphuric acid clouds of Venus, the researchers found that the water activity was more than a hundred times below the lower limit at which life can exist on Earth. 

The research also shows that Jupiter’s clouds have a high enough concentration of water, as well as the correct temperature, for life to exist there. The study has been published in Nature Astronomy. 

Dr Hallsworth said: “Our research shows that the sulphuric acid clouds in Venus have too little water for active life to exist, based on what we know of life on Earth.

“We have also found that the conditions of water and temperature within Jupiter’s clouds could allow microbial-type life to subsist, assuming that other requirements such as nutrients are present.

“This is a timely finding given that NASA and the European Space Agency just announced three missions to Venus in the coming years. One of these will take measurements of Venus’s atmosphere that we will be able to compare with our finding.” 

Co-author of the report, an expert on physics and chemical biology of water, Dr Philip Ball, commented: “The search for extraterrestrial life has sometimes been a bit simplistic in its attitude to water.

“As our work shows, it’s not enough to say that liquid water equates with habitability. We’ve got to think too about how Earth-like organisms actually use it – which shows us that we then have to ask how much of the water is actually available for those biological uses.” 

Co-author of the report, NASA-based planetary scientist Prof Christopher P. McKay, said: “We derive water activity of atmospheres without a model of any sort, based only on direct observations of pressure, temperature, and water concentration.” 

Dr Hallsworth added: “We have also performed calculations for Mars and Earth and show that these calculations can be done for planets outside our solar system.

“While our research doesn’t claim that alien (microbial-type) life does exist on other planets in our solar system, it shows that if the water activity and other conditions are right, then such life could exist in places where we haven’t previously been looking.” 

Co-authors of this paper include planetary scientist Christopher P. McKay (NASA Ames Research Center, CA, USA); atmosphere chemistry expert Thomas Koop (Bielefeld University, Germany); expert on physics and chemical biology of water Philip Ball (London, UK); biomolecular scientist Tiffany D. Dallas (Queen’s University Belfast); biophysics-of-lipid-membrane expert Marcus K. Dymond (University of Brighton, UK); theoretical physicist María-Paz Zorzano (Centro de Astrobiologia [CSIC-INTA], Spain); micrometeorology and aerosol expert Juergen Burkhardt (University of Bonn, Germany); expert on acid-tolerant microorganisms Olga V. Golyshina (Bangor University, UK); and atmospheric physicist and planetary scientist Javier Martín-Torres (University of Aberdeen, UK). 

The research was funded by Research Councils UK (RCUK), Biotechnology and Biological Sciences Research Council (BBSRC) and Ministry of Science and Innovation.

People with lived experience have their say on stroke research

The Stroke Association, the UK’s leading stroke charity, is announcing the top 10 priorities for stroke research, uncovered by a study involving stroke survivors, carers and health and social care professionals in stroke.

The charity’s new report – the first UK-wide project to map research priorities across the entire stroke care and treatment pathway – reveals where research can address the issues holding Stroke Association survivors back from rebuilding their lives after a devastating stroke.    

John Watson, Director Scotland of the Stroke Association said: “One in five people will have a stroke in their lifetime. Stroke happens in the brain, the control centre for who we are and what we can do. 

“Every stroke is unique because the brain is so complex and stroke can happen in any part of it. This means there are as many different impacts of stroke as there are stroke survivors, posing a huge challenge for research. 

“According to the most recent figures from the UK Medical Research Council, only £30m of public and charity health research spending goes on stroke. This equates to less than £25 per stroke survivor per year compared to £161 per person living with cancer. 

“Despite major breakthroughs over the last 10 years, we now know where there are significant blind spots in treatment and care. These are holding people back from rebuilding their lives. With the number of people having strokes set to rise – it’s estimated that the number of stroke survivors in Scotland could rise to almost 175,000 by 2035, [3].  We must act now and invest in the research that will make the biggest difference to the lives of people affected by stroke.”  

Keen endurance athlete, Andrew (Andy) aged 48 from Perthshire had a stroke in 2019 – he knows only too well the burden of stroke and gaps in stroke research that matter to people affected by stroke.

Andy said: “Stroke research is important to me.  There are many effects of stroke including fatigue and the psychological consequences of stroke that we should know more about. 

“We need to involve people with lived experience of stroke in decisions around stroke priorities to inform researchers and funders about what really matters to us. We know what our difficulties are, and I believe further understanding of those difficulties is a good step towards finding treatments and solutions to enable people to live the best possible life they can.”

Over 1,400 people affected by stroke and professionals in stroke took part in the project, which was carried out in partnership with the James Lind Alliance (JLA), as well as individuals and organisations representing stroke patients, carers and professionals in stroke. 

The Stroke Association is sharing the findings as part of its new report “Shaping Stroke Research to Rebuild Lives: The Stroke Priority Setting Partnership results for investment.” 

The report sets the agenda for stroke research and identifies the areas that most urgently need investment.  There are two lists of 10 priority areas: the first in stroke prevention and acute care, and the second in rehabilitation and long-term care, ranked in order of importance.  

The top priorities in each list are: 

  • Interventions to stop stroke. Stroke strikes every 5 minutes in the UK, but we know that most (80-90%) strokes are preventable [4]. We need increased investment in research so people can avoid the devastating effects of stroke in the first place. 
  • Understanding of, and treatment for mental and emotional problems. Three quarters of stroke survivors experience a change in their mental health [5], we need research so that people can overcome significant effects such as anxiety and depression after stroke.  

Dr Rubina Ahmed, Director of Research and Policy at the Stroke Association, said: “Charities like ours need to look for new ways to help stroke survivors with emotional, mental and communication problems. 

“Establishing what research will make the biggest difference to stroke survivors and those caring for them is just the first step. Stroke research is severely underfunded.  Just £1 in every £100 of public and charity spend in health research is on stroke and this just isn’t enough to solve the big and complex issues caused by stroke. 

“The stroke funding crisis has been worsened by the coronavirus (Covid 19) pandemic, which has had a devastating impact on our income, halving the charity’s research budget.  Stroke research is at risk, which means recoveries of people like Andy are at risk too. Your support can fund the research that will lead to breakthroughs in treatment and care. If you can, please donate so that we can make sure more stroke survivors can rebuild their lives after stroke.  

“We would like to thank everyone who took part in this project: stroke survivors, their carers, professionals in stroke, the James Lind Alliance, the Steering Group members and our partners. By having your say for stroke, you have helped to shape stroke research to rebuild lives.” 

Over the past 30 years the Stroke Association has played a crucial role in supporting stroke research in the UK. By establishing these priorities our charity can support the research that can make the biggest difference to the lives of people affected by stroke.  

Find out how stroke research helps rebuild lives at stroke.org.uk/rebuildinglives or to donate, please visit: stroke.org.uk/saveresearch 

To read the full list of priorities and the report visit: www.stroke.org.uk/psp  

Lost in Transition?

Research shows people with vision impairment lack support to gain quality education and employment

A study just published by the Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham and Thomas Pocklington Trust (TPT) shows one in five people with vision impairment did not gain quality employment despite earning qualifications in line with the general population.

The study tracked 80 participants from England over a period of 11 years (from age 14 to 25) to improve understanding on why this population is vulnerable to becoming long term NEET (not in education, employment or training).

Many of the young people spoke positively about their experiences in school and achieved average or above average GCSE qualifications. But then faced a range of barriers when entering Further Education, Higher Education and ultimately the employment market.

Rachel Hewett, Birmingham Fellow at the Vision Impairment Centre for Teaching and Research School of Education, University of Birmingham said: “The research identified key challenges once the young people transitioned into Further Education (FE). Many young people found adjustments were not put in place in time and they had a lack of access to specialist support.

“Careers guidance often focused on keeping the young person in education, with limited support for transitioning into employment. This led to some of the participants ‘churning’ in the system.”

Many barriers were observed once the participants moved into Higher Education, such as an inaccessible application process for UCAS and Disabled Students’ Allowance (DSA), and inaccessible virtual learning environments and a failure from institutions to make reasonable adjustments.

This led to some of the cohort withdrawing from their courses, repeating modules or entire academic years, or leaving with a degree classification which they feel did not reflect their ability.

Several of the participants wished to pursue apprenticeships but were unable to identify suitable opportunities or access specialist support to help them consider alternative options.

Tara Chattaway, Head of Education at TPT said: “It is evident that young people with vision impairment are not getting the support at transition periods in their lives. The lack of support, accessibility and inclusion can impact on the quality of education the young person receives and on then on their employment opportunities.

“We are calling on Government to bridge this gap and to ensure that the Skills and Post-16 Education Bill and their response to the impending SEND review truly supports the aspirations and learning needs of vision impaired students.”

At the end of the study 66% of the remaining participants were in some form of employment, 17% remained NEET, including seven young people who by the age of 25 had never experienced paid employment. Of particular concern is the lack of support available to help young people with vision impairment access employment once they become NEET, with several of the young people being actively discouraged by Jobcentre Plus staff to search for employment, in favour of long-term benefits.

The research did identify factors that drive positive outcomes for young people with vision impairment. They include:

  • Self-advocacy skills and a good understanding of their vision impairment and the adjustments they require.
  • A well developed and broad range of skills for accessing information.
  • Mobility and orientation skills, including skills for getting around in unfamiliar environments.

Tara added: “At TPT we understand the importance vision impaired students having the right access to materials, assistive technology and independence skills in order to thrive in education and to transition into employment. More must be done.”

New capability network will help businesses in Edinburgh and the Lothians access support and unlock innovation

The National Manufacturing Institute Scotland (NMIS) has announced the formation of a new network that brings together leading Scottish research and innovation, education, and training providers to help unlock manufacturing innovation and drive growth in the sector across the country.  

Spanning the length and breadth of Scotland, the network is led by NMIS and includes Mountain Bike Centre of Scotland (MTBCOS), Scotland’s national centre for mountain biking innovation and excellence, based just outside Edinburgh, as a lead partner. Other partners include Energy Skills Partnership (ESP), and Tay Cities Engineering Partnership (TCEP).

The network will offer an easy means for manufacturing companies that work with individual partner organisations, to tap into the vast expertise across the entire network. Companies will also be able to access the capability partners’ own networks including the renowned High Value Manufacturing Catapult through NMIS.

Providing an open channel to share knowledge, capability, and ideas, the network is accessible to all organisations across the country that can contribute to creating a sustainable and vibrant future for the Scottish manufacturing and engineering community.

Expanding upon the ability of NMIS to address national and global manufacturing challenges and support the goal of making Scotland a global leader in advanced manufacturing, the announcement comes at a critical time as manufacturers across Scotland are recovering from the impact of COVID-19. 

John Reid, National Manufacturing Institute Scotland CEO said: “The NMIS Capability Network makes it easier for companies in the Edinburgh and Lothians manufacturing and engineering community to tap into and benefit from world-class expertise and capability.

“This is a crucial moment in time as manufacturers seek to navigate complex situations such as the climate emergency and post pandemic recovery. Now is a time to refocus, embrace innovation and seize the opportunities that so often emerge from challenging times.

“Sitting at the cutting edge of manufacturing innovation, the network partners each have a fundamental part to play in developing tomorrow’s manufacturing workforce, improving productivity, and helping companies, and people, in our community prosper.”

Business Minister for Scottish Government, Ivan McKee said: “As we begin to make our way out of the Covid-19 pandemic and look to rebuild and grow Scotland’s economy, a vibrant and diverse manufacturing sector has never been more critical to long-term recovery and success.

“Our £75m investment in NMIS continues to deliver strong outcomes even during the challenging times we are facing now – from supporting the initial response to the pandemic to playing a key role in developing and delivering our Manufacturing Recovery Plan. 

“We must utilise the experience, expertise and ingenuity of all of Scotland’s manufacturing industry to create the best conditions for the sector to thrive.

“The network is an essential part of our support across industry, academia and the public sector working to deliver greater, greener and fairer prosperity for manufacturers across all of Scotland.”

Professor Geraint Florida-James, lead academic at MTBCOS, added: “I am delighted that MTBCOS will be part of the NMIS Collaboration Network. 

“MTBCOS has been supporting companies in the cycling industry since 2014. MTBCOS is a centre for open innovation and has an extensive partnerships network which allows companies access to national and international markets.

“The relationship with NMIS will allow MTBCOS access to an expanded repertoire of expertise and resources, which will be of huge benefit to the businesses we work with. We look forward to being an active member of this exciting network.” 

Professor Sir Jim McDonald, Principal & Vice-Chancellor of the University of Strathclyde, said: “The University of Strathclyde is committed to applying its research, expertise and sector-leading approach to partnership working with business, industry and government to help Scotland recover from the COVID-19 pandemic.

“Manufacturing will play a central role in that recovery and through our participation in this new capability network we look forward to helping companies across Scotland to innovate, develop their workforces and to drive economic growth.”

The NMIS Capability Network includes CENSIS, Construction Scotland Innovation Centre, Energy Skills Partnership, Mountain Bike Centre of Scotland, the Scottish Institute for Remanufacturing, Scottish Research Partnership in Engineering, SeedPod, and Tay Cities Engineering Partnership.

To find out more about the NMIS capability network or to enquire about joining visit NMIS Capability Network | National Manufacturing Institute Scotland (NMIS).

Counting the cost of food delivery apps: Which? investigation

A Which? snapshot investigation found ordering takeaways via food delivery apps was up to 44 per cent more expensive than going directly to the restaurant, while new research from the consumer champion also reveals that app users are sometimes struggling to get a satisfactory solution when something goes wrong with their order. 

Which? researchers looked at the costs of ordering meals for between two to four people from five restaurants and cafes, both directly and on food delivery sites Deliveroo, UberEats and Just Eat. Across the five restaurants, ordering via a takeaway app proved 23 per cent (£7.14) more expensive on average than ordering directly from the restaurant.

Orders on Deliveroo were the most expensive overall, costing an average of 31 per cent (£9.91) more per order than ordering directly from the restaurant. UberEats orders cost an extra 25 per cent (£7.93), while JustEat orders were only 7 per cent (£1.56) more expensive.

JustEat did not deliver for one of the restaurants Which? looked at and on another, it applied a £7.30 discount. JustEat said it offers a price promise to help ensure customers do not pay more for food they order through its app compared to ordering via the restaurant’s online delivery service.

The most expensive order was a £43.94 Deliveroo takeaway from a burrito and taco restaurant, which cost 44 per cent (£12.29) more than ordering directly from the restaurant. Even before adding delivery and service charges, the cost of the food was 26 per cent (£8.30) more.

Prices on apps are generally set by restaurants. However, restaurants often increase the price of items when bought through the apps to cover the service fees that the apps charge them. Ordering directly from the restaurant also does not incur the delivery charges that ordering from a delivery app does.

Costs vary between apps, with each one charging different service and delivery fees.

For restaurants forced to close during national or regional lockdowns, the apps offered a lifeline to keep their businesses open. However, a number of the restaurants investigated told Which? they have had to raise their prices in the apps to account for the commissions of between 15-35 per cent they have to pay the delivery services.

The apps say their commissions are essential for running the service – for example, insurance, paying delivery riders, customer services and services offered to restaurants.

During the pandemic, people’s use of food delivery apps increased as consumers looked online for their weekly takeaway and grocery shop. But if customers are feeding a family, these higher prices can quickly pile up. Consumers may not be aware that they are paying these higher prices if they have not visited the restaurant themselves.

In Which?’s recent survey of more than 2,000 UK adults, more than half of people (56%) told the consumer champion they had used delivery apps for takeaways or groceries.

Around six in 10 people told Which? they used takeaway apps at least monthly pre-pandemic, compared with seven in 10 now. JustEat was the most widely used app, with two in five adults (39%) choosing it compared with a quarter (26%) for UberEats and one in five (20%) for Deliveroo.

This new research from the consumer champion also found that customers frequently have problems with orders and often find there is no way to effectively complain or put things right when this happens.

The most common issues with deliveries were late arrival, cold food and missing items. Others reported ruined items, as well as orders not turning up.

Six in 10 (59%) Deliveroo users surveyed told Which? they had a problem in the last 12  months, while more than half (53%) UberEats and JustEat (53%) customers reported having an issue with an order.

The most common resolution for UberEats customers was being offered a cash refund, but Deliveroo and JustEat users were more often offered credit or a voucher in the app. Some of these credits and vouchers come with expiry dates, and if consumers are not regular users, they could lose their money. JustEat said customers are asked to apply the credit to their account within 30 days, after which they are able to use it indefinitely.

Of those who had a problem, more than half of Deliveroo customers (53%) and two in five JustEat (46%) and UberEats (42%) customers found it difficult to complain the last time something went wrong, according to Which?’s survey. Only around half of those who did complain were happy with how it was resolved.

Which? believes food delivery apps should make the responsibilities of the restaurant and app clearer so customers are not at risk of losing out if things go wrong. The consumer champion heard from many people across all of the food delivery apps who found it hard to speak to someone about their order and were passed between the delivery driver, the app and the restaurant.

If a customer is due a refund, consumer law is clear that they should get it in the same way they paid out originally, unless they agree otherwise. Customers do not have to accept credit or a voucher in the app if they paid with their own credit or debit card.

Adam French, Which? Consumer Rights Expert, said: “Next time you fancy a takeaway, you should be aware that the undoubted convenience offered by a delivery app comes with a hidden additional cost. If something goes wrong with your order, you might also find yourself caught between the restaurant and the app.

“Food delivery apps should do more to make the responsibilities of the restaurant and themselves clear so consumers are not caught between the two if there’s a problem with their order.

“If customers are owed a refund for a delivery which has gone wrong, they should remember they may be entitled to a cash refund under consumer law – they don’t have to accept credit or a voucher if it isn’t what they want.”

A Deliveroo spokesperson said: “Deliveroo always aims to offer our customers great value while also delivering sustainable growth for our restaurant partners. We encourage restaurants to set the same menu prices as they offer customers when dining in, and the commission we charge is then reinvested back into our business, paying for riders’ fees, customer services and upgrading our services for restaurants.

“We have a positive track record of helping our small restaurant partners throughout the pandemic and this will continue to be our priority as restaurants look towards a full reopening.”

A JustEat spokesperson said: “Just Eat is only successful if our restaurant partners are successful.  We believe our commission rates are aligned with the value we provide to our partners and we have a track record of helping restaurants prosper.

“It’s really important to us that our customers have a positive experience when using Just Eat. Whenever we’re made aware of any customer experience that falls short of the high standards we hope to deliver, we will always investigate and take appropriate action to ensure we find a suitable solution.”

An Uber Eats spokeswoman said: “At Uber Eats, we are completely focused on ensuring that the best restaurants and the best selection of food is available to customers, delivered in an average time of less than 30 minutes.

“We have a dedicated customer service team to help customers who have issues with their orders, and we would encourage anyone who does have an issue to reach out in the Help section of the app.”

Major research project measures COVID-19 antibody levels in people with cystic fibrosis

A Queen’s University Belfast research team is leading an international study on COVID-19 Antibody Response in Cystic Fibrosis (CAR-CF). 

The study is to be carried out by a team of researchers from the university’s Wellcome-Wolfson Institute for Experimental Medicine (WWIEM). It will measure COVID-19 antibody levels in thousands of people with cystic fibrosis across 17 European countries and is funded by a $1.5m grant from the CF Foundation (US) over a two-year period.  

The project will also run in Canada and the US, making the research the largest prospective study in cystic fibrosis (CF) to have been carried out to date. 

The coronavirus pandemic has been a worrying time, but it has been particularly stressful for people with long-term conditions such as CF.

CF is a chronic condition that damages the lungs and leaves patients vulnerable to chest infections. There is currently little information about how COVID-19 has impacted people living with CF, however, they may be at particular risk from this new respiratory virus and the various strains. 

Dr Damian Downey, Clinical Senior Lecturer in Respiratory Medicine from the WWIEM at Queen’s, and Director of the Northern Ireland Regional Adult CF Centre, who is leading the project, said: “Viral respiratory tract infections can be more severe in people with CF than the general population, with an increased risk of complications and a negative impact on lung function. 

“This new research project will explore infection and vaccination rates in those with CF and link to important clinical information over time. We can then understand how COVID-19 has impacted this vulnerable population, how long the antibodies last and the risk of future infections.” 

Dr Downey is the Director of the European CF Society Clinical Trials Network which involves 58 research centres in 17 countries. This network will oversee the project and the WWIEM at Queen’s University will be the central European laboratory that will analyse the research results.