Fields in Trust – the independent charity that has been protecting parks and green spaces for almost 100 years – has announced that its search for the UK’s Favourite Parks is back this summer and is calling upon the residents of Edinburgh to get nominating now!
The popular campaign has returned for the first time since 2019 and covers the length and breadth of the nation to shine a light on the green spaces that hold a special place in our hearts.
Having acted as refuge to many over the past few years, Fields in Trust is bringing back the campaign to find the UK’s Favourite Parks to ensure that they continue to be celebrated in a post-pandemic world.
The charity recently commissioned a study which found that almost half of us have visited local parks more often than we used to as a result of the Covid-19 pandemic.
Coupled with research that has shown that access to nature was one of the main ways people have supported their mental health during lockdowns, Fields in Trust is determined that this year’s campaign celebrates the spaces that gave us so much in our time of need.
This year’s UK’s Favourite Parks campaign is made all-the-more important in light of the Fields in Trust’s recently released annual Green Space Index report.
The study – which analyses the provision and distribution of parks and green spaces in the UK – found that 2.8 million people live more than ten minutes’ walk away from a green space.
With only 6% of green space legally protected in Great Britain, Fields in Trust worries that this will only worsen in coming years if we do not appreciate and advocate for our local parks.
Chief Executive of Fields in Trust, Helen Griffiths, said: “There is no doubt that the importance of green spaces has been acutely felt recently, with people increasingly turning to their local parks to find a sense of tranquillity, space, and belonging since the pandemic began.
“When restrictions were at their highest, many sought refuge in their daily walk around the park; and when restrictions lifted to allow outdoor gatherings, the same parks became the backdrop for reunions with loved ones and new memories made.
“At a time when things were so hard for so many, these places provided respite; now, through our UK’s Favourite Parks campaign, we want to give people the chance to show their appreciation for the green spaces that were there for them.”
The search for the UK’s Favourite Parks starts today, meaning you can nominate your local green space now. Nominations are open until Tuesday 5 July, before the chosen parks go head-to-head in a public vote.
Regional spots to have made the UK’s Favourite Parks list in previous years include Figgate Park, Pittencrieff Park and Wilton Lodge Park in Hawick, and this year, the Fields in Trust team hopes to unearth even more green spaces that are close to Scotland’s hearts.
“We are thrilled to be on the search once again for the UK’s Favourite Parks and we have no doubt that we’ll find some absolute gems along the way. We can’t wait to see the places that get put forward in Scotland.
“Whether it’s the park you head for when the sun is shining; your favourite place to walk the dog; the place you go to stretch your legs; or your family’s favourite spot to spend quality time together: we want you to nominate your favourite today!”
NHS Lothian has warned that increasing cases of COVID-19 are placing mounting pressure on hospital and community services.Health chiefs said community prevalence of the virus is causing serious capacity issues across the whole system.
An estimated one in 20 people currently have the virus in Scotland with two thirds of the cases identified in the 20-59 age group. This is having an impact on workforce, with one fifth of nursing staff not at work as a result of COVID-19 absence.
Dona Milne, Director of Public Health, NHS Lothian urged people not to forget all that has been learned about keeping the virus under control.
She said:“COVID-19 has not gone away and cases are continuing to rise across Lothian. Our hospital system is under extreme pressure and we need people across Lothian to do their bit to prevent the system becoming overwhelmed.
“We would urge people to take sensible precautions when they are indoors or in crowded spaces and remind them that regular hand hygiene is vital and face coverings should be considered, especially in crowded places.”
Tracey Gillies, Medical Director of NHS Lothian said:“The number of hospital inpatients who have tested positive has increased by 50% since a week ago. This presents many logistical issues as they need to be cared for within COVID-19 specific areas.
“On top of that, and in line with community transmission levels, there are increased numbers of staff testing positive with COVID-19, who must then self-isolate to protect patients.
“All of this means services are stretched right across the system, including community and social care services, resulting in high numbers of patients who are medically fit to leave hospital but who cannot be discharged because they need care in place to support them at home.”
Relatives of patients are also being urged to help where they can by providing transport home for patients who are medically fit to be discharged, rather than have their relative wait for hospital transport.
This speeds up the discharge process and in turn frees up more hospital beds sooner, allowing faster admission for patients from our Emergency Departments where admission queues can form when the hospitals are full.
Relatives are also being asked if they can consider offering support to their loved ones who have been clinically assessed as “medically fit for discharge” but might still need extra help around their home.
Dr Gillies added:“We know that it is better for people to be looked after in a homely setting once they are medically fit to leave hospital. Unfortunately, the pressure on community and social care services means many patients are waiting too long for social care support and as a result spending longer in hospital than they need to.
“When appropriate, we therefore ask families to consider if they can step in and help support their loved one once they are fit for discharge. Again, this helps with the flow of patients through our hospitals and ensures that beds are available for the most urgent of cases.”
Dr Gillies reminded people in Lothian to make sure they get the “Right Care in the Right Place” by considering going to their local pharmacy or GP or by calling 111 to get an appointment with an expert in the Minor Injuries Unit (MIU), rather than automatically going to the Emergency Department.
She said:“If you think you need to visit A&E, but it’s not life threatening, call NHS 24 on 111 first, day or night.
“NHS 24 will direct you to the right care in the right place. They will direct you to an expert in our Minor Injuries Unit, GP or pharmacy and help reduce the length of time spent waiting in busy hospital departments.
“It is important too to remember that there is self-care information on NHS Inform.
“If it is an emergency always call 999 or go to your local A&E.”
Outbreak continues to grow and cases remain primarily in gay, bisexual, or men who have sex with men (GBMSM), within interconnected sexual networks.
The UK Health Security Agency (UKHSA) has published its second technical briefing on the ongoing monkeypox outbreak. The briefing shares UKHSA analyses with public health investigators and academic partners.
The latest epidemiological data, findings from interviews with patients and preliminary analyses are included to understand how the outbreak is evolving and to inform timely and effective public health interventions.
Investigations and modelling continue to show that the outbreak is growing and cases remain primarily in gay, bisexual, or men who have sex with men (GBMSM), within interconnected sexual networks.
UKHSA continues to work with partners including the Terrence Higgins Trust, Stonewall and the GBMSM community to raise awareness of the signs and symptoms of monkeypox. The LGBT Consortium and Pride organisers across the UK have been encouraged to help share public health messaging during Pride month.
79% of England cases are known to be London residents and 99% of all confirmed cases are male, with 5 confirmed female cases. The median age of confirmed cases in the UK was 37 years old.
Of the 813 cases identified in England up to 22 June, 321 (39.5%) had enhanced surveillance questionnaires. The majority (96%) of cases were GBMSM, with further data to indicate transmission is occurring in some sexual networks both internationally and domestically.
Cases frequently reported history of a sexually transmitted infection (STI) in the last year (54.2%) and 10 or more sexual partners in the last 3 months (31.8%). Existing links between cases and sexual health services will be used to identify those at highest risk who are eligible for pre-exposure vaccination.
Dr Meera Chand, Director of Clinical and Emerging Infections, UKHSA said: “If you’ve recently had new or multiple sexual partners, please be vigilant to the symptoms of monkeypox. Currently the majority of cases have been in men who are gay, bisexual or have sex with men. However, anyone who has had close contact with an individual with symptoms is also at increased risk.
“If you are concerned that you may have monkeypox, don’t go to events, meet with friends or have sexual contact. Instead, stay at home and contact 111 or your local sexual health service for advice. Please contact the clinic ahead of your visit and avoid close contact with others until you’ve been reviewed by a clinician.
“To assist with our contact tracing, we encourage everyone to ensure they exchange contact details with sexual partners, to help us limit further transmission where cases occur.
“We are grateful to all those who have come forward for testing and who help us understand the outbreak through participating in studies and investigations.”
UKHSA will continue to publish regular technical briefings as the response to the outbreak continues.
LAWYERS WARN OF MORE VICTIMS IN NHS LOTHIAN AUDIOLOGY CASE
Lawyers supporting victims of the NHS Lothian hearing service scandal have warned that the number of children affected could be far greater than those identified in the independent report.
An audit of the health board’s audiology services found significant concerns in 155 of the 1007 patients treated between 2009 and 2018, which led to some children being identified with hearing loss years later than when first tested.
However, it has now emerged that THOUSANDS of children could be affected as lawyers highlight the 1,007 patients analysed in the audit was just a “sample” of those tested during the 9-year period.
Grace Smith, Associate at global law firm PGMBM, who are supporting parents affected by the scandal, said: “Whilst the audit highlighted those 155 children who were significantly affected by the failures at NHS Lothian, it is clear that the real number of families affected is much higher.
“The audit was performed on a sample of just over 1000 patients that were treated at NHS Lothian between 2009 and 2018. Within that 9-year period there were far more children through the doors of the Paediatric Audiology Service. The patient case load for this time frame was 22,900.
“The audit found concerns with 88% of the records within the sample. If that same percentage is applied to the full patient caseload across that time period, then the number of families affected by the report, delays and misdiagnosis could run into five figures. We know that there are children who were not included in the audit sample who have been affected by the failings highlighted in the audit report. ”
PGMBM are representing a parent whose child was not included in the audit sample – but experienced significant and serious delays in diagnosis.
Grace added:. “One of the families we are representing was seen by NHS Lothian’s Audiology Service several times from 2019 after their child failed a hearing test at birth.
“Despite repeatedly raising concerns about their child’s hearing, they were dismissed again and again and told that their child’s hearing was normal. However, at almost three years old, an external second opinion diagnosed their child with severe hearing loss. This significant delay in diagnoses happened at a key developmental stage for their child.
“There are clearly more people affected than were reviewed in the audit sample. We would appeal to anyone worried to get in touch with either NHS Lothian or ourselves and we can look at ways to support you.”
The British Academy of Audiology report found systemic failings which led to babies and children undiagnosed or experiencing significant delays in diagnosis and treatment.
It was found that there were a series of serious issues particularly within the under-five age group of the Paediatric Audiology service. The root causes of these failures were found to be a lack of scientific leadership, knowledge, reflection and enquiry in the presence of a lack of routine and robust quality assurance process.
The report found that staff were not following professional standards, training was almost exclusively in-house and insufficient, testing was not carried out correctly and there was no evidence of consistent management protocol or structure for children after results of tests. As such children who presented with similar test results and histories were being managed in different and contrasting ways. It also found that parents concerns were often dismissed.
NHS Lothian apologised following the report which was published last December.
Anyone who thinks they might be affected by the issues identified in the audit and would like more information can speak to PGMBM lawyers at:
A three times Olympic athlete has hit the ground running in a bid to support fellow Scottish sportswomen.
Record breaking British and European middle and long-distance runner Eilish McColgan has a string of records under her belt – and this month (June 2022) broke her mother Liz’s Scottish record to win a 10,000m race in the Netherlands with a time of 30 minutes 19.02 seconds.
And now she hopes to give others a helping hand to boost their own sporting careers.
Thirty-one-year-old Eilish and her partner, Olympian Michael Rimmer, 36, have jointly set up Giving Back To Track; a non-profit organisation that aims to inspire women from all walks of life to reach their athletic best.
Not only have they created a fund to provide financial help to female athletes in Scotland, aged between 16 and 22, but they have also launched a community scheme that supports Eilish’s local club, Dundee Hawkhill Harriers.
Giving Back to Track was formed just six weeks ago after what Eilish described as a “brainstorm” moment earlier this year. “I realised how incredibly lucky I’ve been to have support and sponsorship and now that I’m a little more comfortable I wanted to give something back,” she said.
“I know how hard it is to get started in this career, so we thought we’d put a call out to ask other female athletes in Scotland if we could help – they don’t need to be runners, they can be from any disciplines within running or track and field.
Giving Back to Track has already awarded six £1000 bursaries along with sports clothing from sponsors and career guideline advice from Eilish and Michael.
Eilish, whose mother Liz McColgan won the 10,000m world title in 1991, said initially the scheme will focus on her local club Dundee Hawkhill Harriers and will support young women and children from the community.
“No child should be priced out of a sport,” she said. “There are so many costs involved; the cost of track facilities, buying training kits, transportation and paying for club fees and this is where we are able to help”.
If the scheme runs smoothly, Eilish and Michael hope to extend the sponsorship more widely: “We’re really just at the starting point – we’d actually love to grow it to include guys as well and not just in Scotland but in England, Wales and Ireland,” she said.
Last month (May 2022) Eilish claimed the European and British 10km road race at the Great Manchester Run, shaving two seconds from Paula Radcliffe’s unbeaten 19-year record, with a time of 30 minutes and 19 seconds.
National charity and leader in lifesaving and lifeguarding training across the UK and Ireland, the Royal Life Saving Society UK (RLSS UK), is urging people to get summer ready by brushing up on their water safety skills and knowledge with their national Drowning Prevention Week campaign (18 – 25 June).
With over 400 people dying each year in the UK and Ireland from accidental drowning, it’s clear that it’s a topic that needs more attention.
Lee Heard, Charity Director at RLSS UK said: “With June, July, and August proving to be the months with the most fatalities, it is vitally important that everyone has an understanding of water safety, especially during the summer months.
“We have seen a rise in the number of drownings over the last few years, with peaks during the summer. In July 2021, there were 49 accidental drowning fatalities in the space of just two weeks in the UK, and we know that with the right water safety knowledge, accidental drownings are avoidable.
“We want to ensure that everyone can enjoy their summer break and enjoy being in or around water but be safe in the knowledge that they, and their children, have the skills and understanding about water safety, which could potentially save a life. Every life is worth saving.”
Drowning is not just a topic that needs attention for those who take part in water-based activities either, in 2021 evidence from the National Water Safety Forum showed that 40% of people had no intention to enter the water.
The Royal Life Saving Society UK (RLSS UK) has a range of free educational resources available on their website for children, young people and parents and are holding their annual Drowning Prevention Week campaign between 18th-25th June to equip everyone across the UK and Ireland with the skills and knowledge to make the right decisions about water safety.
Lee Heard continued: “This year for Drowning Prevention Week we are aiming to educate more young people than ever about water safety and give children the skills to enjoy a lifetime of fun in the water.
“We have a range of free educational resources available on the RLSS UK website, including lesson plans for schools and resources for parents, as well as a brand new animation to engage young people in learning about water safety.
“In a recent survey, over 55% of parents said they would not be confident their child would know what to do if they fell into open water; this is something we want to change.
“Drowning Prevention Week brings the focus of water safety to people’s minds, giving everyone the opportunity to be equipped with the appropriate skills and knowledge to be summer ready when it comes to being safe in and around water during the summer months and beyond.”
With many families opting for staycations and heading to the coastlines and waterways for holidays in recent times, having an understanding of what to do if you find yourself or someone else in trouble in the water is more important than ever.
Lee Heard added: “If you or someone else finds themselves in difficulty in the water, it’s vital to remember the Water Safety Code: whenever you are around water you should stop and think to assess your surroundings and look for any dangers; stay together when around water and always go with family and friends; in an emergency call 999 and ask for the Fire and Rescue service when inland and the Coastguard if at the coast; and finally float to live, if you fall in or become tired, stay calm, float on your back and call for help, or if you see someone in the water, throw something that floats to them and resist temptation to go in.”
Drowning Prevention Week takes place 18th-25th June and free resources can be downloaded from www.rlss.org.uk/dpw.
UK Health Security Agency publishes new guidance on offering the Imvanex vaccine to men considered to be at higher risk of exposure.
A strategy published today by the UK Health Security Agency (UKHSA) recommends that some gay and bisexual men at higher risk of exposure to monkeypox should be offered vaccines to help control the recent outbreak of the virus.
Although anyone can contract monkeypox, data from the latest outbreak shows higher levels of transmission within – but not exclusive to – the sexual networks of gay, bisexual and other men who have sex with men.
The virus is not currently defined as a sexually transmitted infection, but it can be passed on by close and intimate contact that occurs during sex.
In response, the UK Health Security Agency’s (UKHSA) vaccination strategy recommends offering the smallpox vaccine Imvanex, which is shown to be effective against monkeypox, to men considered to be at higher risk of exposure.
The strategy is endorsed by the Joint Committee on Vaccination and Immunisation (JCVI), which was consulted on the eligibility criteria for the vaccine.
An individual’s eligibility would depend on a number of factors but would be similar to the criteria used to assess those eligible for HIV pre-exposure prophylaxis (PrEP) – but applied regardless of HIV status.
The strategy states that a clinician may advise vaccination for someone who, for example, has multiple partners, participates in group sex or attends ‘sex on premises’ venues.
NHS England is due to set out details on how eligible people can get vaccinated shortly. People are advised not to come forward for the vaccine until contacted.
Dr Mary Ramsay, Head of Immunisation at UKHSA, said: “Our extensive contact tracing work has helped to limit the spread of the monkeypox virus, but we are continuing to see a notable proportion of cases in gay, bisexual and other men who have sex with men. By expanding the vaccine offer to those at higher risk, we hope to break chains of transmission and help contain the outbreak.
“Although most cases are mild, severe illness can occur in some people, so it is important we use the available vaccine to target groups where spread is ongoing. The NHS will soon set out details on how this will be delivered – so do not come forward for the vaccine yet.
“In the meantime, everyone should continue to be alert to any new spots, ulcers or blisters on any part of their body, particularly if they’ve had close contact with a new partner. If you think you have these symptoms, avoid close contact with others and call NHS 111 or your local sexual health centre, though please phone ahead before attending.”
Alex Sparrowhawk, Health Promotion Specialist at Terrence Higgins Trust, said: “This targeted vaccination programme is a positive move forward while the data still shows monkeypox is disproportionately affecting gay and bisexual men in the UK.
“We encourage everyone, regardless of their sexuality, to be vigilant about new spots, ulcers and blisters. We are continuing to closely monitor the latest data in order to play our part in providing the latest guidance and health information on monkeypox, to empower the communities most affected to best protect their health.”
Robbie de Santos, Director of Communications and External Affairs at Stonewall, said: “While we know anyone can catch monkeypox, we welcome the vaccine being offered to those gay and bi men who are eligible and currently at a higher risk of getting the virus.
“It is important that gay and bi men get the vaccine when offered to protect themselves and others. Let’s help get the outbreak under control so we can all have a safe and happy pride season.”
UKHSA is now publishing a regular data report on monkeypox in the UK. The report will be published every Tuesday and Friday.
Dr Sophia Makki, Incident Director at UKHSA, said: “We continue to see a steady increase in monkeypox cases. We’re reminding everyone to be aware of the symptoms of monkeypox, particularly if you’ve recently had new or multiple sexual partners, to help prevent further spread and protect others.
“If you have a rash with blisters, or any other monkeypox symptoms, don’t go to events, meet with friends or have sexual contact. Instead, stay at home and contact 111 or your local sexual health service for advice.
“Please contact the clinic ahead of your visit and avoid close contact with others until you’ve been reviewed by a clinician.”
This week is Learning Disability Week (20th – 26th June) and an education expert has shared five pieces of advice on how to support children if they have learning disabilities.
Interestingly, research conducted by Oxford Home Schooling revealed that while overseeing their children’s learning during lockdown, many parents spotted potential signs of a learning difficulty.
Nearly half (47%) identified symptoms of dyslexia (difficulty reading, writing and spelling), whilst more than one in four (29%) observed possible indicators of dysgraphia (impaired handwriting or spelling).
To help parents who now think their child may have a learning difficulty, Greg Smith, Head of Operations at Oxford Home Schooling, has put together a guide on how best to support your child and what your next steps should be.
Get your child diagnosed
If your child’s difficulties are having a significant impact on their learning, it’s a good idea to have them tested for a condition and diagnosed.
A diagnosis can open the door for your child to receive appropriate learning support in school. This includes allowing them extra time in exams and being supported by a teaching assistant, so it’s a good idea to look into this as early as possible.
If you’ve observed signs that your child may have a learning difficulty, you should speak to your GP, who can either make the diagnosis themselves, or refer the child for the appropriate tests.
Speak to your GP
Once a child is diagnosed with a learning difficulty, you should consult your GP. They will then be able to recommend and refer you to an appropriate specialist for support1.
Specialists can include speech and language therapists, educational and clinical psychologists and paediatricians, among others.
Make the school aware
Once you have an idea of the areas where your child is struggling, you will need to make their school and teachers aware of the situation.
This will allow the school to put extra support in place should your child require it. They will need time to consider how the condition might affect the child’s learning and work out how best to adapt their teaching.
Talk to others
Many parents find it difficult to process the diagnosis of a learning difficulty and it can be a challenge to adapt to your child’s new needs.
Don’t be afraid to seek out the support of other parents who have experienced similar situations. There are many support groups and forums out there for advice, and you and your child can even build new friendships.
Support your child
The important thing to remember is that you need to support your child, whether this is with their learning, or any other aspects of life that they struggle with.
Being diagnosed with a learning difficulty is by no means the end of the world and children with such conditions go on to enjoy rich and fulfilling lives.
You will need to be patient, and it may be challenging at times, but with the correct support system in place your child will be fine.
For information on the benefits of homeschooling for children with learning disabilities and special educational needs, head to this page:
“This is the most ambitious reform of public services since the creation of the NHS” – Humza Yousaf
Legislation to establish a National Care Service for Scotland (NCS) will ensure the best possible outcomes for people accessing care and support and end the ‘postcode lottery’ of care, says the Scottish Government.
The National Care Service Bill will make Scottish Ministers accountable for adult social care in Scotland – a change strongly supported by those responding to the recent consultation on the plans.
The Bill provides the foundation for the NCS, and enables the fine detail of the new service to be co-designed with people who have direct experience of social care services.
Plans have also been published to explain how that collaboration will work.
The aims are to:
support people in their own homes or among family, friends and community wherever possible, with seamless transitions between services;
create a charter of rights and responsibilities for social care, with a robust complaints and redress process;
introduce rights to breaks for unpaid carers
introduce visiting rights for residents living in adult care homes, giving legal force to Anne’s Law
ensure fair employment practices and national pay bargaining for the social care workforce;
focus on prevention and early intervention before people’s needs escalate;
create a new National Social Work Agency to promote training and development, provide national leadership and set and monitor standards in social work.
On a visit to Aberdeen-based charity VSA, which supports people with a wide range of social care needs, Cabinet Secretary for Health and Social Care Humza Yousaf said: “This is the most ambitious reform of public services since the creation of the NHS.
“People have told us they want a National Care Service, accountable to Scottish Ministers, with services designed and delivered locally. That’s exactly what we are going to deliver.
“The design of the NCS will have human rights embedded throughout, and the actual shape and detail of how the NCS works will be designed with those who have direct experience of accessing and providing social care.
“We are going to end the postcode lottery of care in Scotland. Through the National Care Service we’re going to ensure everyone has access to consistently high-quality care and support so they can live a full life. This is our ambitious goal and while it will not be easy to achieve it is vital that we do.”
Social Care Minister Kevin Stewart said: “One of the key benefits of a National Care Service will be to ensure our social care and social work workforce are valued, and that unpaid carers get the recognition they deserve.
“When this Bill passes we will be able to have the new National Care Service established by the end of this parliament. In the interim we will continue to take steps to improve outcomes for people accessing care – working with key partners, including local government, and investing in the people who deliver community health and social care and support.”
Chief Operating Officer of VSA Aberdeen John Booth, said: “We welcome the announcement that the National Care Service Bill has been published. With this being the biggest reform since the creation of the NHS we will now take the time to properly review the bill to understand the opportunities and challenges that lie ahead.
“We look forward to working with the Scottish Government to co-design the NCS to ensure the voices and needs of the vulnerable people who rely on our vital services are heard.”
Local government umbrella body COSLA has issued a statement:
A massive restructuring project, limited resources, local government opposition … Now, what could possibly go wrong?
· £4.25 million research grant has been awarded that seeks that seeks to discover meaningful MND treatments within years, not decades
· Grant awarded by charities LifeArc, MND Association, My Name’5 Doddie Foundation and MND Scotland, together with government research organisations Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR)
· Funding awarded to researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh to establish a new UK-wide motor neuron disease (MND) research partnership to address problems hindering progress
· Funding is a springboard for the MND community to develop plans for further ambitious and large-scale research projects, attract significant investment for MND, and encourage more centres to join the scientific mission to find treatments and ultimately a cure for MND
· Generosity and fundraising efforts of charity supporters have played a big part in making this partnership a reality.
Global MND Awareness Day: A group of charities and government research organisations has awarded £4.25 million to MND experts at six UK universities to kick start collaborative efforts to end motor neuron disease (MND).
This new ‘MND Collaborative Partnership’ brings together people living with MND, charities LifeArc, MND Association, MND Scotland and My Name’5 Doddie Foundation, government bodies Medical Research Council (MRC) and National Institute for Health and Care Research (NIHR),with researchers from King’s College London, University of Sheffield, University of Liverpool, University College London, University of Oxford and University of Edinburgh.
The partnership team will work together to find solutions to address problems currently hindering MND research and seeks to discover meaningful treatments within years, not decades.
Members of this new UK-wide MND research partnership will work together and pool their expertise over three years to:
coordinate research effort and deliver maximum impact for people with MND
develop better tests to measure MND progression and that allow doctors to compare different drugs
improve MND registers so doctors can collect detailed, high-quality data about the disease, and understand which patients are most likely to respond to a particular drug and therefore recommend them for the trials most likely to benefit them
support people to take part in clinical trials more easily
develop more robust lab tests and models of disease to enable scientists to test theories about the disease and a pipeline of potential therapeutic agents that could ultimately be used as MND treatments.
They will also launch a major new study involving 1,000 people with MND from across the UK to better understand disease progression and how people respond to new and existing treatments.
MND (also known as amyotrophic lateral sclerosis, or ALS) is a devastating neurodegenerative disease affecting the brain and spinal cord. People progressively lose nearly all voluntary movement and need complex care, and around half of those diagnosed die within two years.
Six people are diagnosed with MND every day in the UK and the condition affects around 330,000 across the world. One person in every 300 will develop MND. The only licensed drug for MND in the UK has a modest effect on extending life – but no treatments are available that can substantially modify disease or cure the condition.
Professor Ammar Al-Chalabi, co-director of the research programme and Professor of Neurology and Complex Disease Genetics at King’s College London and Director of King’s MND Care and Research Centresaid: “Our goal is to discover meaningful MND treatments within years, not decades. This landmark funding will bring the UK’s major MND research centres together for the first time in a coordinated national effort to find a cure.
“We now have a much better understanding of MND, so we must take this opportunity to accelerate development of new treatments and work together to move this knowledge into the clinic and help people affected by this devastating disease.”
Dr Catriona Crombie of LifeArc, the charity which has coordinated efforts from all funders to deliver this landmark MND Collaborative Partnership, said: “Over recent years, scientists have made great progress in MND, and this has opened up several promising avenues that could ultimately make a difference to patients.
“But there are some barriers hindering progress. For the first time, the MND community – that’s patients, funders, scientists and doctors – have come together to work out the problems and plan a way forward. As funders we are really excited at what this exceptional group of people could achieve for those affected with MND.”
David Setters, who is living with MND and has been involved in shaping the partnership said:“We welcome this collaboration, which paves the way for the £50 million government investment promised in November 2021, focused on making the first meaningful treatments for MND available within years, instead of decades.
“It brings real hope to those of us living with MND to see our leading neuroscientists and charities coming together in this way. The prospect of easier access to clinical trials and the most promising therapies being fast-tracked gives us a much-needed boost and brings a real sense of purpose to the community.”
Professor Christopher McDermott, one of the co-directors of the research programme and Professor of Translational Neurology at the Sheffield Institute for Translational Neuroscience (SITraN)said: “We believe that by combining and coordinating our expertise, we will be more effective than if we work on projects in isolation.
“This partnership will provide the infrastructure to attract additional MND funding and enable further MND centres and researchers to join forces in the national effort to find effective treatments for MND. The partnership is the first step towards our goal to establish a national MND institute.”
Health and Social Care Secretary Sajid Javid said:“Motor neuron disease has a devastating impact on those who are diagnosed, their families and loved ones – but there is hope.
“This new partnership is a highly ambitious approach which will drive progress in MND research and, backed by £1 million of government funding, will bring the MND research community together to work on speeding up the development of new treatments.The collaboration across government, charities, researchers, industry and people with MND and their families will take us one step closer to one day achieving a world free from MND.”
The Partnership was formed in 2021 to coordinate and pool funding for research into MND to speed up progress and help research to move towards the clinic and ultimately reach patients faster.
Funding for the MND Collaborative Partnership research grant totals £4.25 million and contributions are as follows: LifeArc (£1 million), MND Association (£1 million), My Name’5 Doddie Foundation (£1 million), MND Scotland (£250,000), Medical Research Council (MRC) (£500,000) and National Institute for Health and Care Research (NIHR) (£500,000).
