Children in Scotland diagnosed with a brain tumour that has a specific genetic mutation can now be treated on the NHS with a kinder, more effective targeted therapy.
It’s used in combination with another medicine, trametinib, and both can be administered at home as they are taken orally. This means fewer hospital visits.
The news follows the approval given in April this year by the National Institute for Health and Care Excellence (NICE).
Current standard treatment for the condition typically involves surgery – where that’s possible – chemotherapy and/or radiotherapy. But less than 30% of children diagnosed with high-grade gliomas survive for five years or more and the treatment often has brutal side effects.
Outcomes for low grade gliomas – the most common childhood brain tumour – are better at a 90% survival rate following surgery. But chemotherapy may also be prescribed whereas this treatment means improved quality of life for patients as clinical trials showed its side effects were rare.
The combination medication is the first targeted treatment to be made available on the NHS for paediatric gliomas. It is already licensed for use in the USA, and for use in the UK in adults with the BRAF mutation who have some types of lung and skin cancers.
The two drugs work together to block the growth signal coming from the mutant BRAF protein, slowing or even stopping the tumour from growing.
Brain tumours affect around 500 children a year in the UK, of whom between 150 to 175 may have a glioma and fewer still will have the BRAF mutation. But despite the small numbers involved, this is the first progress made in treating the disease in years.
In 2008, research carried out by Dr David Jones which was funded by The Brain Tumour Charity (then known as the Samantha Dickson Brain Tumour Trust), identified a BRAF mutation that was common in pilocytic astrocytoma brain tumours.
This was the first time that a specific genetic change had been detected in these tumour types and it paved the way for drug development as it could then become a target for diagnostic tests, changing the research landscape for low grade brain tumours in children.
Dr Jones now leads the EVEREST Centre in Germany, which carries out research into paediatric low grade brain tumours.
Dr Michele Afif, Chief Executive at The Brain Tumour Charity, said: “We are delighted that the Scottish Medicines Consortium has joined NICE in approving the first new treatment for paediatric brain tumours in decades.
“We hope that this will be the first of many new treatments that will ensure our community can live longer and better lives.”
To find out more about The Brain Tumour Charity, visit:
Curbing sky rocketing A&E waiting times must be the number one priority for the Scottish government with winter just around the corner.
That is the call from The Royal College of Emergency Medicine (RCEM) Scotland as A&E performance data for July represented the worst July since records began in 2011 for extended wait times in Emergency Departments.
This is double the number of people who waited this long in July last year.
The data also shows long waits have increased significantly since the 2010s.
Since July 2017, for example, the numbers of people waiting four hours or more has increased by nearly seven times (5553 to 38,379), eight hours or more by 53 times (248 to 13,146), and 12 hours or more by 279 times (20 to 5,593). This was despite attendances only increasing by 0.9% in the same period.
Delays in discharging patients is a key reason that doctors cannot admit patients into hospitals from their Emergency Departments, therefore causing long waits. In July, there were 61,165 days spent in hospital by people who were well enough to be discharged but unable to be due to a lack of social care provisions. This is equivalent to 167 years.
Dr John-Paul Loughrey, RCEM Vice President for Scotland said: “The Scottish government must take heed and put measures in place to end long wait times in our Emergency Departments.
“These staggering statistics are deeply worrying for the people of Scotland who are facing incredibly long and tiring waits despite it being summer. We have been dealing with ‘winter levels’ of pressure, which does not bode well as we start to head into the colder months. The first day of winter is just three months away, which will inevitably heap pressure on the health care system.
“Continuing to focus on diverting patients away from A&E rather than addressing the capacity problems will not avert the coming crisis. These statistics aren’t just numbers. They are people who have come to our Emergency Departments needing emergency care. They deserve better. Our health care colleagues deserve better.”
A graphical representation of the data can be found here.
In a ground-breaking first for Scotland, laboratory specimens have been flown from one NHS board to another – by drone.
This step forward by the Project CAELUS initiative, led by AGS Airports in partnership with NHS Scotland, took place during a three-week flight trial between NHS Lothian and NHS Borders.
Live flying took place between the Edinburgh BioQuarter next to the Royal Infirmary of Edinburgh and Borders General Hospital in Melrose.
Invited guests were involved in a special event on Wednesday (21st August) showcasing the live flight trial with presentations around the work conducted by Project CAELUS.
Currently, laboratory samples which inform urgent clinical decision-making are transported by road and can take up to five hours between NHS Borders and NHS Lothian due to due to needing to make multiple pick-ups.
Innovation activity being conducted by Project CAELUS could see this delivery take 35 minutes, enhancing the transport provision, particularly for rural areas.
Project CALEUS is working with 16 consortium partners to deliver what will be the first national drone network that can transport essential medicines, bloods and other medical supplies throughout Scotland including to remote communities.
Fiona Smith, Project Director for Project CAELUS said: “Our consortium has been working extremely hard to get to this stage and we are delighted we have been able to test this important use case for the NHS.
“Transporting laboratory specimens by drone could speed up the clinical decision making allowing for same day diagnosis and treatment.
“It is also one of the first times in the UK that there has been a demonstration of beyond the visual line of sight medical drone operations transiting between controlled and uncontrolled airspace.
“This is an important milestone for our project and we now look forward to testing more potential use cases by drone across Scotland in the coming months.”
Hazel Dempsey is the CAELUS NHS Scotland programme lead: “Our aim, from an NHS perspective, is to explore opportunities where drone technology could benefit patients and NHS services in urban, remote, rural and island landscapes.
“The NHS is reliant on van logistics that have provided valuable service for decades, however these can take time, travelling hundreds of road miles each day. In some parts of Scotland, patients who live in remote and rural locations are dependent on ferry or airline availability.
“This project will enable the NHS to consider if drone technology is viable and able to contribute to improving the health and wellbeing of our population. This project will position the United Kingdom and NHS Scotland as a leader in healthcare and aviation industries.”
CAELUS (Care & Equity – Healthcare Logistics UAS Scotland), is part funded by the UK Research and Innovation (UKRI) Future Flight Challenge.
It brings together 16 partners including the University of Strathclyde, Skyports Drone Services, NATS and NHS Scotland.
In the latest live flight trials, tests were also carried out on how NHS staff in future would engage with the drone both physically and digitally.
Dr Tracey Gillies, Medical Director and Executive Lead for Innovation, NHS Lothian said, “Across NHS Lothian, we are continually exploring ways to innovate and enhance our patient experience.
“Lothian and the surrounding areas are very diverse, from city to country and coastal living. Drones could play an important role in helping to transport samples for testing or speed up the delivery of critical medical supplies.
“These exciting trial flights have been a collaborative effort between our clinical leads, South East Innovation Hub and partner organisations and I look forward to seeing further developments with this project.”
Laura Jones, Director of Quality & Improvement at NHS Borders said: “We are proud to be involved in Project Caelus, exploring how drone technology could provide an additional logistics service to enhance access to essential medical supplies particularly in rural parts of Scotland like the Scottish Borders.
“Our involvement in this project is part of our commitment to providing high quality person-centred care by modernising services so that they are fit for the future using the technologies that are available to us going forward.”
Since January 2020, the CAELUS consortium has designed drone landing stations for NHS sites across Scotland and developed a virtual model (digital twin) of the proposed delivery network which connects hospitals, pathology laboratories, distribution centres and GP surgeries across Scotland.
In October 2023, in a hugely successful trial, flying took place between Glasgow Airport and NHS Golden Jubilee in Clydebank. This initiative was showcasing the integration of drones with modern airspace.
Live flight trials were operated by CAELUS consortium member Skyports Drone Services. The UK-based operator is an experienced provider of drone delivery, survey and monitoring services. The company has a long history of operating medical drone deliveries, including the first drone deliveries with the NHS.
The Scottish Ambulance Service also carried out a simulation study in August to better understand the feasibility of delivering an Automated External Defibrillators (AEDs) via drone technology.
Paul Gowens, Associate Director, Research and Innovation with the Scottish Ambulance Service, said: “We are delighted to be a key partner in Project CAELUS.
“Our recent study carried out in Edinburgh was a great success as we learned more about the feasibility of delivering an Automated External Defibrillators (AEDs) via drone technology. We look forward to working alongside AGS and our partners on Project CAELUS on future milestones.”
Richard Ellis, NATS New Airspace Users Director, said: “This is a major step forward for the project and its fantastic to see many of the operational concepts we’ve helped developed be put into use.
“We are now a step closer to realising a truly integrated airspace where drones fly safely and seamlessly alongside conventional aircraft.”
The University of Strathclyde’s principal investigator for the project, Dr Marco Fossati, said: “The latest live flight trials mark an important milestone in the journey to developing a national medical transport drone network.”
Mike McNicholas, managing director for Infrastructure at AtkinsRéalis said: “It is a fantastic step forward for the project to make its first drone delivery and to see the ground infrastructure in use as part of the test flight.
AtkinsRéalis has been working closely with the AGS Airports-led consortium on the development of large, portable landing pads that can be folded up and stored when not in use, or moved to another location to receive another drone landing.
“Using a combination of digital twin technology and live test flights, Project CAELUS is able to trial various prototypes, taking learnings from each iteration to hone designs and land on something that can demonstrate the viability, scalability and efficiency of a drone network for medical deliveries across Scotland.”
Anne-Lisa Scaillierez, partner at The Drone Office: “Public feedback from our engagement activities has shown overwhelming support for using drones in medical logistics across Scotland.
“We’re thrilled by the significant progress achieved as part of Project CAELUS.”
David Hiller, Associate Director of Arup, said: “Arup has been enormously privileged to contribute to such a pivotal study, helping to better understand the human impacts of noise in relation to health and wellbeing.
“The study facilitated by CAELUS is one of the first of its kind and will support broader innovation globally. Cross-sector collaboration is both exciting and crucial as the capabilities of advanced air mobility technology evolve.”
Connected Places Catapult’s Ecosystem Director for Air Mobility & Airports, Andrew Chadwick said: “It is tremendous to see drones being used as part of Project CAELUS to transport essential medical supplies from one site to another, particularly as this is the first time a drone flight has operated in Scotland between two different NHS health boards.
“Connected Places Catapult has been working with NHS Scotland to develop the business and economic cases for these types of services alongside consortium members, and we look forward to exploring future opportunities for drone operations.”
New partnership for pioneering kidney health research
Clinical trials to accelerate research into treating chronic kidney disease will be strengthened as a result of a new partnership between the Scottish Government, academia and industry.
NHS Scotland, AstraZeneca and the Universities of Dundee and Glasgow will work together on new medicines to slow the progression of chronic kidney disease, reducing the risk that patients might need dialysis or kidney transplantation.
The partnership will allow for development of new treatments to treat chronic kidney disease, build infrastructure and enhance expertise in renal clinical trial delivery in Scotland with the key aim of improving patient outcomes.
Preventing progression of the disease allows people to live longer, better lives, free from other consequences of the condition such as heart failure, cardiovascular disease and stroke. This allows people to work, contribute to their communities and economy, while reducing pressure on the NHS.
Cabinet Secretary for Health and Social Care, Neil Gray, said: “This project’s ‘triple helix’ approach is a shining example of how collaboration between the NHS, Scottish Government, academia and industry can accelerate health studies. As we navigate the complex issue of chronic kidney disease, our commitment to patient-centred research remains unwavering.
“Together we can advance targeted studies into medicines that slow progression of the disease and reduce the need for dialysis or transplantation, strengthen our workforce through dedicated research fellows and specialised training, provide greater opportunities for patients, and enable Scotland to attract and deliver more innovative trials.”
Professor Dame Anna Dominiczak, Chief Scientist (Health) at Scottish Government said: “I welcome this partnership with AstraZeneca which builds upon the excellent research infrastructure and expertise we have in Scotland, to drive the development of new treatments for chronic kidney disease.
“We must all work together to improve the outcomes and life circumstances for people living with kidney disease; and this partnership enables the fusion of medical expertise, knowledge, and insight from across NHS, academia, and industry.”
Tom Keith-Roach, AstraZeneca UK President, said: “Scotland is setting a bold ambition to change the trajectory of chronic kidney disease. We are thrilled to invest in a partnership with the University of Glasgow, the University of Dundee, and the Scottish Government to speed up the study of three potential new combination medicines to treat this disease.
“The triple helix of industry, academia and NHS Scotland is a powerful force with the potential to transform care and outcomes for people.
“Furthermore, we believe Scotland is well placed to collaborate with AstraZeneca to shape our research on the world stage across a number of disease areas and attract investment to the country’s thriving Life Science sector.”
A multi-disciplinary team established to consider how the recommendations in the Cass Review might apply to NHS services in Scotland has submitted its findings to the Scottish Parliament.
A senior clinical team, commissioned by the Chief Medical Officer for Scotland, considered all 32 recommendations of the Cass Review into Gender Identity Services for Children and Young People in NHS England.
The team assessed to what extent they were applicable in the Scottish context, and whether they could be implemented in Scotland’s health service.
Recommendations of the multi-disciplinary team included:
a lead senior clinician, preferably a consultant, should take overall responsibility for each young person’s care
each care plan should include a full assessment of the child’s needs, both psychological and physical
as elsewhere in the UK, the use of puberty-supressing hormones – commonly referred to as puberty blockers – should be paused until further clinical trials can be undertaken. NHS Scotland will continue to engage in the forthcoming UK study
work to design a regional service for children and young people should begin immediately, and services should ultimately be provided as locally as possible, based in children’s health services, with strong links between secondary and specialist services.
The conclusions of the report will now be considered by the Scottish Government – both in relation to how current services should be delivered to ensure service continuity, as well as on how these services should be commissioned in the future to ensure sustainable person-centred care.
Deputy Chief Medical Officer Professor Graham Ellis said: “The Cass Review was established to make recommendations on how to improve NHS England gender identity services for children and young people. Through this review we have aimed to set out which recommendations could apply to Scotland, and how they might be implemented.
“At the heart of this question are children and young people in distress, and our ambition must remain focused on meeting their needs with holistic, person-centred care as close to home as practical.
“The Cass Review identified the need to ensure that gender identity services for young people are more closely aligned with other areas of clinical practice, and that responsibility for the full range of services required should extend beyond specialist services. This will be essential as we seek to always provide the best possible care.
“In responding to the Cass Review, the multi-disciplinary team looked at the recommendations from a clinical perspective, always remembering that we have a responsibility to make sure that all children and young people grow up safe, respected and supported.”
Health Secretary Neil Gray said: “The Scottish Government welcomes the multi-disciplinary team’s report, which has carefully considered the Cass Review’s recommendations and how they apply to Scotland.
“The conclusions of the report will now be considered and used to improve gender identity healthcare for children and young people. The Scottish Government will update Parliament after summer recess.
“We remain absolutely committed, not just to ensuring ongoing support is available, but to reforming and improving gender identity healthcare across Scotland.”
Following last year’s advice from the Joint Committee on Vaccination and Immunisation (JCVI), Public Health Scotland has been working with the Scottish Government and NHS boards to develop plans for the roll out of Scotland’s Respiratory Syncytial Virus (RSV) vaccination programme to protect newborns, infants and older adults.
RSV is a common respiratory virus that generally causes mild illness with cold-like symptoms. Most cases recover after 2-3 weeks of illness, but RSV can cause severe illness in some people, including newborns, infants and older adults, leading to complications and hospitalisation.
With the new programme set to commence later in the summer, some information is now available on NHS inform and more detail will follow soon.
Software to reduce hospital waiting times and enhance operating theatre efficiency will be rolled out in NHS boards across Scotland over the next year.
Developed by clinician-led tech company Infix, the national theatre scheduling tool improved operating room efficiency by up to 25% without the need for extra medical staff or additional theatres during successful pilots across three health boards. It also enabled the completion of additional operations for patients which resulted in significant financial savings.
The platform will now support all NHS Boards to increase productivity, remove paper processes, and reduce the overall administrative burden in the creation and approval of theatre lists, which can delay patient treatment.
In a speech in Edinburgh later today, Health Secretary Neil Gray will outline the role of innovation and collaboration in the future of Scotland’s health service.
He said: “Better use of data and digital technology is critical to how we drive improvements in healthcare and is a key part of our plans to reform services.
“This technology is backed by more than five years’ worth of NHS operating times data and is just one of the initiatives that will help enable us to schedule 1.5 million procedures per year – while improving data quality to help safely increase productivity. This will help maximise capacity, build greater resilience and reduce waiting lists.
“Reducing the administrative burden on staff will give them more time to spend on patient care. This is a shining example of how we are embracing cutting edge tools to tackle the challenges facing health and social care.”
Health Secretary Neil Gray has opened the NHS Scotland Academy Skills and Simulation Centre at Clydebank’s Golden Jubilee University National Hospital.
The custom-built centre provides state-of-the-art training and education facilities to practitioners including an array of advanced simulators.
Designed and run by the NHS Scotland Academy – a partnership between NHS Education for Scotland and NHS Golden Jubilee – the centre replicates real-world environments where learners can hone their skills in a safe, controlled setting.
During its first year of operation it’s expected that the centre will train more than 800 healthcare staff, helping to accelerate training for in-demand areas of the NHS workforce.
For example, nurses will be able to develop their operating theatre skills, previously learnt in a year, in just six months. The centre will also support large scale diagnostic training for Endoscopy and other vital clinical skills.
Health Secretary Neil Gray said: “Harnessing the latest technology is an important part of our plan to reform and recover Scotland’s NHS. It’s exciting to see how the innovations in the Skills and Simulation Centre will be used to accelerate training skills by providing unprecedented hands-on experience.
“The NHS workforce is our greatest asset and that is why it’s so important to invest in their training and development. Quicker and more effective training will help to improve diagnostic accuracy and therefore patient outcomes as well as address workforce pressures and aid retention of staff across NHS Scotland.”
Director of NHS Scotland Academy, Learning and Innovation, Kevin Kelman said: “We are absolutely thrilled today to welcome the Cabinet Secretary to formally open our brand new Skills and Simulation Centre as part of the NHS Scotland Academy.
“As the healthcare landscape continues to evolve, the NHS Scotland Academy remains committed to fostering innovation and excellence in health and social care education.
“The launch of the Skills and Simulation Centre reaffirms its position at the forefront of medical training, empowering the future NHS workforce to deliver safe, effective and person-centred care to all.”
Since the NHS Scotland Academy’s launch in 2021, more than 12,000 clinical and non-clinical staff have undertaken training through their programmes and dedicated online resources.
A new multi-disciplinary team led by the Chief Medical Officer (CMO) and including paediatric, pharmacy and scientific expertise, will be convened to examine clinical recommendations of the Cass Review, and consider how they may apply to NHS Scotland, Minister for Public Health Jenni Minto has told the Scottish Parliament.
Giving an update on the Scottish Government’s response to the review, which was chaired by Dr Hilary Cass, the Minister also restated the Scottish Government’s commitment to invest £9 million to support the improvement of NHS gender identity healthcare in Scotland. As part of this overall commitment, £2 million will be allocated this year and in each of the next two years.
In her statement, Ms Minto reiterated the Scottish Government’s commitment to make sure services are delivered to the highest standards, including continuing work to develop new National Standards for Gender Identity Healthcare.
These standards will be published in the summer.
Ms Minto said: “I want to start by speaking directly to our young people, and in particular our trans and non-binary people across Scotland. I know these last few weeks and months have been incredibly difficult, with increased media attention and toxic online commentary.
“I want to reassure you that the Scottish Government remains absolutely committed, not just to ensuring ongoing support is available for you, but to reforming and improving gender identity healthcare.
“We are absolutely committed to investing £9 million to support the improvement of NHS gender identity healthcare in Scotland. As part of this commitment, since December 2022, we have invested over £2.8 million to support work to improve access to gender identity healthcare in Scotland, with over £2.2 million of that allocated directly to Health Boards with gender identity clinics.
“Now we will invest a further £2 million, as a part of our £9 million commitment, this year and a further £2 million in each of the next two years and we are committed to long term sustainable funding for these services beyond that point.”
Ms Minto added: “We already have a Strategic Action Framework for the improvement of NHS gender identity services. As part of this work, the CMO has agreed that the Deputy Chief Medical Officer and other Senior Medical Officers will support careful consideration of the Cass Review’s clinical recommendations and engage on the recommendations with the Scottish Association of Medical Directors and other clinical leaders.
“A multi-disciplinary clinical team within the CMO Office in the Scottish Government, including paediatric, pharmacy and scientific expertise, will assess the clinical recommendations and engage with the relevant clinical community and leadership in Health Boards in relation to those recommendations.
“The CMO will provide a written update to Parliament on the outcome of that clinical consideration process before the Summer Recess.”
