Cyrenians, NHS Lothians LEAP, and Edinburgh Alcohol and Drug Partnership have been successful in a recent Corra Foundation grant bid to develop and implement a Women’s Recovery House in Edinburgh.
The House, for patients moving on from residential recovery in the LEAP program, offers women who do not have a safe home to return to the opportunity to continue their recovery supported by their peers.
The first of its kind in Edinburgh, the house creates a level playing field for women, who until this point have had limited options available upon completing the 12 week LEAP programme.
Amy Hutton, Director of Services at Cyrenians said, “This is a fantastic step forward in supporting the recovery community, particularly women who have been underserved in this area for quite some time.
‘We know, from experience, that highly traumatised women don’t fare well in standard service delivery environments, so to be able to offer a bespoke, safe home, truly is groundbreaking.
‘Men in Edinburgh completing the LEAP programme have benefited from a similar model for many years, so this new Women’s House really levels the playing field and helps us continue providing peer support to women who otherwise would be isolated in their recovery.”
This new funding not only allows the partnership to provide accommodation beyond the LEAP programme, but will also support the development of a Wellbeing Coordinator, providing assistance to patients throughout the LEAP programme and during their stay at the Recovery House.
Viki Fox, LEAP Manager for Cyrenians added: “The number of women attending our LEAP programme has been increasing year on year. To have this move on option available for those who would otherwise be discharged into an unsafe home, or indeed, homelessness, is a fantastic step forward to improving their quality of life and ability to stay in recovery.
‘By providing additional support through our wellbeing coordinator we will be able to offer practical and emotional support that will help build self-esteem and independence.
‘Recovery is only the first step – learning to live again beyond addiction takes time, and without support can feel overwhelming and thankless. The support from Corra Foundation allows us to address this need directly, and ultimately will provide women in Edinburgh the chance to rebuild their lives on their own terms.”
Ian and Poppy experienced improved physical and mental health due to Frame Running
A new study found that Frame Running has the potential to positively affect health and wellbeing of young people with limited mobility.
Frame Running (formerly known as RaceRunning) is an adapted sport for children, young people and adults who cannot run and who rely on aids for mobility and balance.
A Frame Runner is a three wheeled frame where the individual is supported by a saddle and body plate. The athlete propels against the frame using their feet, and steers using handlebars like those on a bike.
Researchers observed a trend towards improved muscle strength after 12 weeks of Frame Running training and many participants noticed an improvement in their performance of activities including being able to walk for longer and walking uphill. Action Medical Research and the Chartered Society of Physiotherapy Charitable Trust jointly funded the study.
Poppy’s story
One of the study participants, 13-year-old Poppy, has paralysis and weakness in her upper body and core due to a rare neuromuscular condition called acute flaccid myelitis (AFM) which she developed at age six.
“For Poppy, Frame Running and participating in the study has been life transforming. As a result of developing acute flaccid myelitis, Poppy had to learn to sit, stand and walk again and uses a wheelchair,” says Laura, Poppy’s mother.
“She also has a gastrostomy (feeding tube) to help her get the nutrition she needs and uses a ventilator at night to help her breathe. Before the illness, Poppy was a very sporty child and loved running, but as a result of the illness, she could no longer run or take part in any sport safely – until she discovered Frame Running.
“The opportunity to try Frame Running was a positive turning point in Poppy’s life. She left one of her early sessions with a massive smile on her face and said ‘Mummy, I am so happy that there is a sport that I can do.’ She felt strong and accomplished and it gave her a huge confidence boost.”
The results of the study are significant as people with cerebral palsy and conditions such as AFM may be at increased risk of heart disease and type 2 diabetes due to reduced mobility.
Children with cerebral palsy may have difficulties walking and can find it challenging to take part in physical activities. This can lead to a lack of exercise that often starts early on in childhood and persists throughout their lives.
Dr Marietta van der Linden from the Centre for Health, Activity and Rehabilitation Research, Queen Margaret University, Edinburgh says: “Our research showed that Frame Running can have a wide range of benefits, not only on outcomes of fitness and physical fitness but it also allows young people to feel part of a club, make friends, compete and go fast.”
In the pilot study, 15 children and young people with cerebral palsy or acquired brain injury affecting coordination took part in a one-hour weekly Frame Running training sessions for 12 weeks.
Results show that Frame Running is a feasible, enjoyable and safe activity for children and young people with severe walking difficulties.
In the study interviews, children said that they enjoyed the sense of freedom and speed of Frame Running and that it provides them with opportunities to be active and competitive.
Parents liked that Frame Running could also serve as physiotherapy or as part of their rehabilitation strategy. The data collected before and after the study showed positive trends indicating improvements in resting heart rate, muscle strength, and self-reported performance of activities such as being able to walk for longer and walking uphill.
However, further studies with more participants are needed to verify this.
Action Medical Research are pioneers in funding innovative early research which paves the way for new treatments and management of medical conditions.
Dr Caroline Johnston, Senior Research Manager at Action Medical Research, said: .“The success of this research in demonstrating the health benefits of Frame Running is significant as it could result in people with mobility problems and cerebral palsy participating in physical activity and reducing their risk of heart disease and diabetes,”
The research has stimulated additional research funded by the MS Society investigating the feasibility of Frame Running for people with Multiple Sclerosis.
“We found very similar themes in our study involving people with MS, but there were some interesting differences as well, which highlights the importance to regard each health condition and each person individually,” says Dr Marietta van der Linden.
Ian’s story
Participating in an innovative Frame Running study has transformed the life of thirteen-year-old Ian from Edinburgh who lives with cerebral palsy. Ian’s mother Sheena came across RaceRunning, now known as Frame Running, in 2019. In Frame Running people use a Frame Runner, a three wheeled frame where the athlete is supported by a saddle and body plate.
The athlete propels against the frame using their feet, and steers using handlebars like on a bike. Ian, even though he was only eight at the time, really took to the sport and has been Frame Running ever since. Hi – hi
The study that Ian took part in 2019 was funded by Action Medical Research and the Chartered Society of Physiotherapy Charitable Trust. The pilot study, led by researchers Dr Marietta van der Linden at Queen Margaret University in Edinburgh and Dr Jennifer Ryan of Brunel University in London, aimed to investigate the potential benefits of regular exercise on the health and mobility of young people with moderate-to-severe cerebral palsy and acquired brain injury affecting coordination.
Ian was one of 15 young people who took part in the study, which found that Frame Running had the potential to positively affect health and wellbeing: Researchers observed a trend towards improved muscle strength and many participants observed an improvement in their performance of activities including being able to walk for longer and walking uphill.
The results of the study will inform the design of future larger studies involving participants from both the UK and abroad.
Dr van der Linden comments: “These results are promising and we hope that these custom-built running frames can enable children with cerebral palsy to take part in aerobic activities that can help improve their overall fitness.
“We are delighted that Ian has really taken to Frame Running and hope that this example will inspire other young people who have mobility issues to benefit from the exercise and freedom that comes with Frame Running.”
Ian’s mum, Sheena, comments: “Ian really enjoyed being part of the study and trains twice a week. Frame Running has given Ian a sense of physical independence and made him realise that he can achieve great things.
“Ian challenged himself to climb 8,810 steps which is equal to the height of Scotland’s highest mountain, Ben Nevis, and he did it! I am thrilled at what Ian has achieved including winning the Rotary Young Citizen Sporting Hero award.
“I really hope that he has shown what is possible with Frame Running.”
Chief Executive at the Chartered Society of Physiotherapy, John Cowman, said: “It is so brilliant to see the results for this study which clearly show that frame running has a very positive impact on the health and wellbeing of young people with limited mobility.
“Hopefully, this research will pave the way for it to become more widely available for children, young people and adults who rely on aids such as this to take part in sports and to be able to enjoy all that it has to offer.”
A total of 938 residential rehabilitation placements were approved between 1 April 2023 and 31 March 2024 to support people to attain an alcohol or drug-free lifestyle.
The Scottish Government is making £100 million available over this parliamentary term to increase access to residential rehabilitation for problematic drug or alcohol use. Latest statistics from Public Health Scotland (PHS) show the number of placements given the go ahead for public funding last year was up 126 on the previous year. The first three months of 2024 represented the highest number of quarterly approved placements since records began.
Drugs and Alcohol Policy Minister Christina McKelvie said: “These Public Health Scotland statistics indicate welcome progress – we are firmly on track to meet our commitment to giving 1,000 people access to public funding for residential rehabilitation each year by 2026.
“We do, however, recognise the scale of the challenge we continue to face and are determined to do more by expanding on good practice and addressing gaps in pathways in collaboration with Healthcare Improvement Scotland.
“My focus is on taking action to save and improve lives now as part of our £250 million National Mission. We’ve already reinforced our human rights-based approach where problematic drug use is treated as a health, not a criminal matter. We are prioritising getting people into the treatment and recovery that is right for them, at the right place at the right time.
“We are determined that every penny of the £100m we are investing to expand residential rehabilitation will make a difference to those who are suited to this form of treatment.”
The Scottish Association of Young Farmers Clubs (SAYFC) is this week announcing a new RESPECT campaign which will be launched at the Royal Highland Show.
The campaign, which is being supported by Scottish agricultural charity RSABI, aims to encourage every young farmer to play their part in positively contributing to SAYFC as a safe, inclusive and fun environment for young people.
The initiative will promote healthy relationships, kindness and inclusivity through positive role modelling supported by education, training and awareness-raising.
As well as promotions at the Royal Highland Show and other events, along with social media activity, the campaign will see the appointment of Respect Ambassadors in every club throughout Scotland.
The initiative will focus on different priority areas through the year, with a focus on training and education. As well as Mental Health First Aid, First Aid and Suicide Prevention training, young farmers from each club will be offered Alcohol Awareness Training supported by RSABI, working with other organisations which specialise in these areas.
RSABI will have a Health Hut located next to the SAYFC building at the Royal Highland Show and this year’s activity by the team of health hut nurses will include a focus on alcohol and responsible drinking.
Working with DrinkAware and Alcohol Focus Scotland, one of the highlights will be an interactive display demonstrating how much is in a unit of alcohol, given the current societal trend for young people to save money by drinking alcohol at home before going out.
The campaign will also aim to raise awareness of the organisations which can offer specialist help and support to people who have been affected by any of the issues raised or negative behaviour. It is hoped that, as well as raising awareness among young farmers the campaign may also have a wider beneficial impact among people of all ages in the Scottish farming community.
Penny Montgomerie, Chief Executive of SAYFC, said: “This campaign builds on work which has been done by SAYFC over recent years to promote an inclusive and safe environment for our members and the wider community, driven by the Development & Wellbeing Committee and the introduction of a new Youth Development Manager staff role.
“We’re grateful to RSABI for their ongoing support, particularly around promoting positive mental health for young people in the industry. We look forward to working closely with them on the RESPECT campaign to provide 150 young farmers across Scotland with alcohol awareness training.”
SAYFC Chair, Ally Brunton, said: “SAYFC is a vibrant network that nurtures growth, celebrates achievement, and champions the future of rural Scotland, and is incredibly important for so many young people in the industry.
“It offers them a support system and enables them to be part of a like-minded community. By fostering a culture of respect and awareness throughout all levels of the organisation, we ensure that our members feel valued and supported, enhancing their well-being and creating a positive impact on the wider community.”
Jillian Kennedy, SAYFC Vice-Chair added: “The RESPECT campaign is a welcome addition to other ongoing SAYFC initiatives including our “AreEweOkay?” campaign, which encourages members to look after themselves and check in on others.
“We look forward to seeing lots of our members at the SAYFC centre at the Royal Highland Show, where RSABI will also be based, to find out more about the campaign and pick up a free branded t-shirt to help spread the important message of respecting yourself and each other!”
Carol McLaren, Chief Executive of RSABI, welcomed the initiative. “We know that young people across Scotland benefit greatly from the experience of being a member of young farmers as a source of friendship, fun and learning and we are pleased to support the positive steps SAYFC is taking to remind everyone about the importance of inclusivity and respect,” she said.
RSABI provides free emotional, practical, and financial support to people involved in Scottish agriculture. Its free confidential support service is available 24 hours a day, every day of the year, by calling 0808 1234 555 (calls won’t show up on phone bills) or through a confidential webchat service, available on RSABI’s website www.rsabi.org.uk.
The charity also offers free licenses to its Thrive Wellbeing app, worth around £100 each, which can be requested by calling the Helpline or emailing:
MND Scotland is marking Global MND Awareness Day on Friday, 21 June by highlighting that, 10 years on from the viral phenomenon that was the ice bucket challenge, the motor neuron disease (MND) community still needs help to fund ground-breaking research into effective treatments and a cure.
In 2014, the ice bucket challenge grew organically to raise a phenomenal $220m globally with 28 million videos uploaded in 159 countries.
£500,000 was raised for MND Scotland, which has been used to fund research and support people in Scotland living with MND.
MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This may cause someone to lose the ability to walk, talk, eat, drink or breathe.
Rachel Maitland, CEO of MND Scotlandsaid: “Awareness of motor neuron disease has never been higher. The ice bucket challenge no doubt played a part in bringing MND to the forefront 10 years ago but we need to keep up the momentum, so everyone knows what MND is, and how brutal the disease is for those who are diagnosed.
“As a charity dedicated to supporting people with MND, and giving them hope by funding vital research, we endeavour to raise awareness every day. But Global MND Awareness Day is an opportunity to highlight that people with MND still need support. And we need to fund research to find effective treatments and a cure.”
Jim Maxwell was diagnosed with MND in February 2020 following the onset of symptoms, including twitching. He lives in Edinburgh and has two daughters. Jim said: “Ten years ago I took on the ice bucket challenge because I was nominated on Facebook.
“I didn’t know what it was raising money for, or what MND was. Ironically, six years later I was diagnosed with the disease. While living with MND is challenging, I want to do everything I can to raise awareness of the disease and improve understanding of how it impacts people.”
This year, MND Scotland is supporting a range of activities to remember the ice bucket challenge and raise vital funds.
One supporter, Greg Proctor (top), is taking on a daily ice bucket throughout 2024 in memory of his dad who passed away from MND. Last month, MND Scotland ran a Dip a Day in May fundraiser with supporters taking on a daily cold-water challenge.
Over the summer, we will be asking everyone to share their videos and text ICED to 70085 to donate £10.
Support MND Scotland’s ice bucket fundraising by visiting our website, or on Just Giving.
Cancer charity Walk the Walk is delighted to announce that His Majesty King Charles III has been confirmed as the charity’s patron.
As the former Prince of Wales, His Majesty first agreed to become Walk the Walk’s patron in 2004. The announcement that the King is to continue his patronage was made to celebrate the first anniversary of his coronation.
His own views on integrated and holistic cancer care, ethical and environmental issues and the belief that everyone has their own potential for good health and well-being, are well known and fully align with the charity. Since His Majesty became a supporter of Walk the Walk, he has fully endorsed its ethos and values.
Walk the Walk Founder and Chief Executive Nina Barough said: “I am thrilled that His Majesty King Charles III has agreed to continue as Walk the Walk’s patron – it is absolutely wonderful to have his royal seal of approval!
“Back in 2004, the King’s views on holistic and integrated cancer care were still not mainstream but were very much in line with our own.
“His opinions gave incredibly high profile backing to what Walk the Walk was attempting to achieve at the time – we continue to be very grateful for his support, which has helped our charity make such a difference to so many people over the years”.
Walk the Walk is also passionate about encouraging women and men to become fitter and healthier and to take control of their own well-being.
The charity is best-known as the organiser of its flagship events the iconic MoonWalk fundraising events in London, Scotland and Iceland, which see thousands of women and men take on a midnight marathon wearing the charities statement decorated bras, to raise awareness and money for the prevention, research and the emotional and physical care of those living with cancer.
Three mental health charities will host a General Election hustings event in Edinburgh for a lively discussion on mental health policies with the five main Scottish political parties.
Change Mental Health, Penumbra Mental Health and Health in Mind have all joined forces to organise the hustings event, taking place at the Augustine United Church in Edinburgh on Tuesday 18th June.
Despite mental health being devolved to the Scottish Parliament, all three charities are emphasising that political parties must prioritise and improve mental health.
Nick Ward, CEO of Change Mental Health, said: “We are in the middle of a mental health crisis. Mental health services aren’t getting the funding they need and people aren’t getting the support that they need, when they need it most.
“It’s time for politicians to tell us what they are going to do about this. We need the mental health of our communities to be at the top of the agenda for this election and we need to make sure that the voices of people affected by mental health are heard so that we can build a future where no one faces mental illness alone.”
Mike Burns, Chief Executive of Penumbra Mental Health, said: ““Each of the main political parties will have a chance to outline how they will challenge the inequalities which impact our mental health.
“People in the audience will rightly be looking to candidates for a commitment to creating a society that supports good mental health for everyone.”
Wendy Bates, Chief Executive of Health in Mind, said: ““Over recent years, our mental health has been affected by events locally, nationally, across the UK and globally.
“People accessing our services tell us that they continue to feel the impacts of the Covid pandemic, conflict across the world, the cost of living crisis and the climate crisis. With over one in four of us now dealing with mental health issues, and support services stretched increasingly thin, we need mental health to be at the top of the agenda for our next government.
“Although health is a devolved matter in Scotland, decisions made in Westminster will have knock-on effects for us here.
“We are delighted to be hosting this hustings together with Change Mental Health and Penumbra Mental Health to open up this vital conversation ahead of next month’s election, hear more about candidates’ commitments, and create space for them to share how they plan to improve our nation’s mental health – which will impact us all both directly and indirectly.”
A recent survey from Change Mental Health’s sister charity, Rethink Mental Illness, found that 4 in 10 people say mental health will be important in shaping their decision on which party to vote for at the General Election on 4th July 2024.
The hustings event on mental health will be an opportunity for people to have their voice heard on improving and prioritising mental health and wellbeing across the country.
Representatives will be available from the SNP, Labour, Conservatives, Liberal Democrats and the Greens.
Scotland is facing a huge public health crisis. In recent years, there has been a massive increase in non-healthcare professionals offering medical treatments, often using counterfeit medicines and operating from unlicensed premises.
In addition, two new threats have emerged as a result of new English regulation creating a “border hopping” phenomenon. Firstly, non-healthcare providers from England are travelling to Scotland to take advantage of the void in regulation.
And secondly, under 18s in England, where it is now illegal to have a procedure, are travelling to Scotland where it is still legal. The consequences of this public health crisis will be catastrophic if action is not taken immediately.
To that end, representatives from the Scottish Medical Aesthetics Safety Group (SMASG), British College of Aesthetic Medicine (BCAM), and British Association of Cosmetic Nurses (BACN) met with a cross-party group of MSPs at the Scottish Parliament on Thursday to outline their concerns and call for change.
The meeting was a positive and proactive one, with those present expressing their agreement that urgent action is absolutely necessary.
Jenni Minto (SNP) Minister for Public Health and Women’s Health agreed that action was urgently required and that a decade had been lost since the government created the Scottish Cosmetic Intervention Expert Group to advise on regulation.
Stuart McMillan MSP (SNP) expressed his concern that the lack of regulation was allowing criminal gangs to exploit the situation by selling unregulated and unsafe products that endangered the public.
Miles Briggs MSP (Con) voiced his worries that the lack of regulation would enable another blood borne disease scandal created by non-healthcare providers using unhygienic premises and sharing treatment consumables.
He stated: “The lack of regulation is deeply troubling and makes it easy for people to procure unsafe products from unlicensed sources and could be set to get worse in Scotland if it doesn’t follow the example of England, which is moving to correct some of these issues.”
Foysol Choudhury MSP (Lab) asked if there were accurate statistics showing the scale of the problem and was informed there were not, since non-healthcare professionals are not currently regulated and therefore this information was not held by Scottish or UK Governments.
Jenni Minto explained that codes to track NHS treatments for complications from such procedures did not exist – so statistics were unavailable, and the establishment of such codes was not a devolved matter. However, she agreed to engage with her UK counterparts after the general election to resolve the matter.
Finally, Katy Clark MSP (Lab) expressed her concern that further consultations and delays would result in regrettable public harm and that interim measures were urgently needed now.
Campaigners left the round-table event feeling hopeful, as Jenni Minto agreed to convene a cross-party group in September, after the Parliamentary recess, to fast track an effective solution.
Hamish Dobbie, organiser of the roundtable event said: “Scotland needs action now, even if that requires interim measures.
“I was delighted with Ms Minto’s suggestion for a cross-party group to get consensus and momentum behind new regulation. A quick win would be to bring Scottish Law into alignment with the rest of the UK and make it illegal to provide and target under 18s in aesthetic procedures.”
Campaigners are adamant that to avoid a major public health crisis, a comprehensive approach is required – including stricter regulations, improved public education, and enhanced enforcement of existing laws.
Both the UK and the Scottish Governments have had over a decade to formulate a strategy to combat the crisis which was identified in the 2013 Keogh Report.
Time is running out before unnecessary and wholly preventable loss of life occurs.
A NEW campaign to raise awareness of loneliness will be launched this week. The theme for “Loneliness Awareness Week” – which runs from June 10 to June 16 – is Random Acts of Connection.
It aims to encourage people all over the country to take a moment to do something unexpected and help a person who may be suffering from loneliness.
Counsellor Lynn Crilly is an expert in this area and supports people experiencing loneliness. She says covid lockdowns created an epidemic of loneliness which the country urgently needs to tackle.
Lynn said: “Lockdown exacerbated loneliness and social isolation. Being forced to work from home, unable to meet with friends or go for a drink went against our nature as social creatures. But despite lockdown being a distant, if horrific memory, there are still a huge number of people in the UK today who say they are lonely.
According to the Campaign to End Loneliness, in 2022 there were 49% (25.99 million) people who reported feeling lonely at some point and of those, 7.1% – or 3.83 million people experience chronic loneliness, meaning they feel lonely ‘often or always’. This has risen since 2020, indicating the impact of lockdown and the change it had on our society on our social interactions and emotional wellbeing.
Lynn added: “Loneliness can often be tied up with other problems like depression or grief, which can cause people to withdraw from friendships, activities or social occasions. But it can also be due to socioeconomic factors like money worries or a change in circumstances such as moving for a job or a divorce.
“It can be hard to tell if someone is lonely. Sometimes they aren’t even aware of themselves. Just because someone enjoys their own company doesn’t mean they are lonely, and conversely, someone who works in a busy office and is surrounded by people may be. Feeling lonely is not necessarily the same as being alone, but someone who is isolated is more likely to experience loneliness.”
If you know someone who might be lonely, the best thing you can do is let them know that you are there for them. There is a stigma attached to loneliness and isolation, particularly in younger people, so don’t just try once and give up if they don’t engage. It could take time for someone to trust you or want to talk about how they are feeling.
Ask if you can help. Often people who are lonely may be so because of their age or because they have become less independent. In an ageing population, this is going to become more prevalent. If you are worried about someone, invite them out or suggest a local charity who could help. Sometimes someone who is older or lives with a chronic health condition may only see carers or health visitors day to day. Even someone driving them to go shopping or for lunch can reduce that isolation.
Join a club or group together. Approach it from a, ‘I’ve always wanted to try x, fancy giving it a go?’ so it doesn’t seem like you are being patronising or pitying. Don’t push people into doing things but if someone seems interested in an activity, you could make it something you do together.
Be reliable. For someone who is isolated or feeling lonely, that promised phone call which gets forgotten can become magnified in the life of someone who might not speak to anyone else for the rest of the day. If you are busy, see if someone else can check in on that person and let them know you will be in touch soon.
Ask how they are feeling. Loneliness is often linked to other health conditions so by talking to someone about how they are feeling, without making it about a specific issue, you may be able to help someone open up and address what could be at the cause, particularly if it’s a recent behavioural change. If someone has a low mood which doesn’t lift, it could be worth asking a charity like Mind or Samaritans for advice.
Make efforts to include them into social activities. We often think of loneliness as something which affects older people but according to the ONS, people aged 16-29 are more than twice as likely to report feeling lonely often or always than those over 70, with those 30-49 close behind. Social media and dependence on technology may also contribute to this with people who grew up swiping on screens interacting more with devices than people. With pubs and restaurants closing down and the impact of lockdown on mental health and what has become the ‘new normal’, the socialising of previous generations has been replaced by on screen interactions which our animal brains don’t treat as the same as meeting people in person.
Two new drugs for diffuse large B-cell lymphoma (DLBCL) have been made available by the Scottish Medicines Consortium (SMC) for use on the NHS in Scotland as a third-line treatment.
Tepkinly (epcoritamab), and Columvi (glofitamab) will be available for use in patients with relapsed or refractory DLBCL after two or more lines of systemic therapy.
Previously, NICE approved Tepkinly and Columvi for use on the NHS in England and Wales for people with DLBCL who’s disease had not responded to at least two previous treatments.
DLBCL is a type of non-Hodgkin lymphoma, which develops in the lymphatic system. Around 5,500 people a year are diagnosed with this form of blood cancer in the UK. And for around 700 of those people, their disease won’t respond to two previous treatments.
Tepkinly is a drug, manufactured by Abbvie, while Columvi is manufactured by Roche. They are both bispecific antibodies designed to recognise and attach to the cancer cells and immune cells, so that the body’s immune system can destroy them.
Josh Hill, Blood Cancer UK’s Scottish policy officer said: “Diffuse large B-cell lymphoma (DLBCL) is a type of blood cancer and while most people go into remission after standard treatment, some people can see their cancer return or stop responding to treatment.
“Today’s decision by the SMC to approve epcoritamab and glofitmab for use on the NHS in Scotland is a welcome step for many.
“Like many that experience blood cancer, people with relapsed or refractory DLBCL experience anxiety around the prospect of not responding to treatment or the cancer once again returning. Advances in bispecifics is set to be an active area of research and drug development in coming years.”
Dr Andrejs Ivanovs, consultant haematologist at the Edinburgh Cancer Centre, said: “The clinical evidence from drug trials using bispecific antibodies including epcoritamab and glofitimab is positive.
“These drugs are incredibly useful as they’re available ‘off-the-shelf’ meaning drugs can be used without delay for lymphoma patients who did not have a lot of success with other treatments.
“Bispecific antibody treatments usually do not require a hospital admission and can be administered in day units and can achieve response in about 50-60% of patients. This is likely to prolong survival rates for people with blood cancer here in Scotland, and that’s exactly what people with blood cancer deserve.”
Aileen Lamb, from Edinburgh whose now in remission from blood cancer said: “As someone who’s been through blood cancer treatment, I am thrilled that the SMC have given full approval for use of epcoritamab and glofitmab to treat diffuse large B-cell lymphoma in Scotland.
“This is important for the whole blood cancer community and gives us hope for our future.”
