The National Institute for Health and Care Excellence (NICE) has approved a new treatment for Lennox–Gastaut syndrome, a severe and treatment-resistant form of epilepsy. This rare neurological condition causes significant learning and behavioural difficulties, with many affected children experiencing developmental delays before seizures begin. The newly recommended drug, fenfluramine (Fintepla), can now be used alongside existing antiseizure medications for individuals aged two and older. Its effectiveness is assessed every six months, with treatment discontinued if it fails to reduce seizure frequency by at least 30%.
Lennox–Gastaut syndrome is particularly difficult to manage, as many existing treatments lose effectiveness over time, leaving patients with limited options. The approval of fenfluramine addresses an urgent need for alternative therapies, particularly for those unable to take cannabidiol with clobazam. The independent committee considered the severity of the condition and its impact on patients’ quality of life when making its recommendation, acknowledging the daily struggles faced by families.
The introduction of fenfluramine offers a vital alternative for individuals who cannot tolerate cannabis-based treatments. By improving seizure control, it has the potential to enhance stability, increase independence, and reduce hospital admissions. The decision reflects a strong commitment to expanding access to effective therapies that improve patient outcomes, alleviate family burdens, and support healthcare professionals in managing this challenging condition. Long-term benefits could lead to greater advancements in epilepsy treatment.
NICE previously endorsed fenfluramine for Dravet syndrome, another rare childhood epilepsy. Its latest approval allows more patients to benefit from a proven treatment that helps manage severe seizure disorders, providing better long-term prospects for individuals living with complex epilepsy conditions.
Group and village communities for autistic people and those with learning disabilities are at risk of closure due to restrictive guidance from the Care Quality Commission (CQC). A framework introduced in 2020, Right Support, Right Care, Right Culture, aims to promote dignity, independence, and community access. However, a clause prevents the registration or favourable rating of new congregate or campus-style settings, leading to closures and the displacement of residents into unfamiliar environments.
Despite evidence showing that village communities offer a safe, fulfilling way of life, families say the CQC’s stance unfairly limits housing choices. In response, relatives have launched Our Life, Our Choice, demanding guidance be updated to allow well-managed village communities to be considered alongside other housing options such as supported and independent living. Campaigners argue individuals should have the right to decide where they live, whether in urban, rural, or community-based settings.
Policies have rightly moved away from outdated NHS hospitals, but campaigners believe these policies have wrongly equated village communities with past models of care. David Wilks, chair of the campaign, argues current guidance discriminates against learning-disabled individuals, as no such restrictions exist for retirement villages, dementia care homes, or nursing communities. He insists choice, a key principle of care, is being undermined by the CQC’s rigid approach.
Village communities, often in rural locations, provide not only housing but also employment, education, and social opportunities, allowing residents to contribute meaningfully. Critics argue these settings isolate individuals from society, but campaigners maintain that people with learning disabilities should choose how and where they live.
People with learning disabilities and autism in Scotland remain in institutional settings, violating their human rights, according to a new report from Scotland’s human rights watchdog. The Scottish Human Rights Commission highlights serious gaps in meeting rights standards and a lack of progress under the Scottish Government’s Coming Home Implementation Plan. Launched in 2022, the plan aimed to transition individuals from hospitals to independent living by March 2024 and prevent unnecessary admissions for non-medical reasons.
The report raises concerns over funding misuse. Of the £20 million Community Living Change Fund, over £12.5 million remained unspent in its final year. Some funds were even used to refurbish institutions instead of supporting community-based housing, contradicting the right to independent living and undermining the initiative’s goals.
The Commission urges the Scottish Government to adopt a new strategy ensuring the rights of people with learning disabilities and autism are upheld. It has proposed a framework to guide reforms and insists urgent action is needed to meet legal obligations. Professor Angela O’Hagan, Chair of the Commission, stressed that too many are still placed far from home or left in hospitals due to a lack of alternatives.
To help those affected, the Commission has launched a film and toolkit, co-created by individuals with lived experience, to help them assert their right to independent living. The watchdog pledges to continue pushing for urgent government action.
The National Down Syndrome Policy Group (NDSPG) and more than 61 organisations advocating for disabled people across the UK have issued an open letter expressing serious concerns about the proposed legalisation of assisted dying. They urge MPs to approach the Terminally Ill Adults (End of Life) Bill with greater caution, ensuring a thorough and inclusive review to prevent unintended harm to vulnerable individuals, as seen in other nations where similar laws have been introduced.
The letter highlights fears that assisted dying legislation could expose individuals with Down syndrome and learning disabilities to undue pressure or coercion, particularly if they struggle to fully understand or consent to life-ending decisions. There is already a history of healthcare inequality, as demonstrated during the Covid-19 pandemic when NHS staff had to be reminded that learning disabilities should never be used as justification for issuing DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) orders. Despite this, research from King’s College London in 2021 uncovered continued failures in the use of DNACPR orders for those with learning disabilities.
Campaigners also criticised the rushed nature of the consultation process, arguing that it fell short of the recommended 12-16 week period, limiting proper public engagement. They pointed out that a lack of accessible materials and adjustments excluded people with learning disabilities from fully participating in discussions on a law that directly affects them.
Rachael Ross MBE, Founding Officer of NDSPG, emphasised the need for caution, stating that while compassionate end-of-life care is essential, the proposed bill does not ensure protection for all. She warned that international evidence shows such laws inevitably expand beyond their original scope, placing the most vulnerable at risk. She stressed that the government has a responsibility to safeguard those at risk and should not proceed with legislation that carries any uncertainty regarding their safety and dignity.
A new report has revealed serious failings in the provision of paediatric continence supplies across England, Wales, and Scotland, leaving disabled children and their families struggling without proper support. Research by Cerebra, alongside Leeds University’s School of Law and the Parent and Carer Alliance CIC, highlights the lack of clear guidance on dignified and accessible continence care. Many families are forced to cover the cost of essential products, while poor-quality supplies lead to additional expenses, including increased laundry and damage to clothing and furniture.
Children with bladder and bowel conditions are often left with ineffective, oversized products, resulting in distress, embarrassment, and social exclusion. Frequent leaks and odours make them vulnerable to bullying and prevent them from fully participating in childhood activities. Report author Luke Clements, Cerebra Professor of Law & Social Justice, described the situation as a “devastating failure” by health and social care services, urging immediate government intervention.
With 900,000 children in the UK affected by bladder and bowel dysfunction, disabled children are disproportionately impacted. Delays in accessing adequate support leave many in pain, at risk of long-term health issues, and socially isolated. Parents often feel blamed for seeking essential products, adding to their distress.
Lucy Fullard, CEO of the Parent and Carer Alliance CIC, called for urgent action, stating that the ongoing crisis is violating young people’s human rights. Cerebra is demanding clear national guidance to ensure all disabled children receive the continence care they deserve.
A new £1.6 million Learning Disability Support Fund has been launched in Scotland to help third sector organisations promote equality, inclusion, and better access to healthcare and social opportunities for individuals with learning disabilities. This initiative replaces the previous Inspiring Inclusion Learning Disability Fund, offering grants between £75,000 and £250,000.
Running for 30 months from October 2025, the fund will distribute £325,000 in its first year, followed by £650,000 annually for the next two years. Minister for Wellbeing, Social Care and Sport, Maree Todd, acknowledged the progress made over the past three decades in supporting those with learning disabilities but stressed the need for further improvements. She highlighted the vital role of third sector organisations in ensuring individuals can live independent, fulfilling lives and access essential services, including healthcare and relationship education.
The Scottish Government has shaped this funding programme based on feedback from people with learning disabilities and will continue working closely with charities to ensure the grants lead to meaningful change. The initiative aims to enhance access to crucial services and opportunities, helping individuals take an active role in their communities.
Celia Tennant, CEO of Inspiring Scotland, expressed pride in overseeing the application process, noting the significant impact such funding has had in the past. Eligible Scottish not-for-profits can apply until 11:59 am on Wednesday, 26 February 2025.
A new report highlights the significant economic benefits of increasing access to disability benefits, showing that the wellbeing boost of £42 billion outweighs the £28 billion annual cost of administering Personal Independence Payment (PIP) and Disability Living Allowance (DLA). The research, titled More than Money: The Lifelong Wellbeing Impact of Disability Benefits, was commissioned by anti-poverty charity Z2K and conducted by think-tank Pro Bono Economics (PBE).
The report finds that many eligible disabled individuals are deterred from applying for these benefits due to barriers in the claims process, leading to poorer financial and health outcomes. Increased access to disability benefits, however, could significantly improve their wellbeing, valued at £12,300 annually per person. The findings suggest that, with over 3.5 million disabled individuals currently receiving benefits, this improvement could result in a £42 billion boost to the economy.
Matt Whittaker, CEO of Pro Bono Economics, emphasised that disability benefits provide vital financial support and enhance the mental wellbeing and life satisfaction of recipients. He called for reforms to simplify the claims process and make it more accessible to eligible individuals.
The report urges policymakers to focus on reducing barriers to accessing benefits and improving the support for applicants. Ayla Ozmen of Z2K stated that disability benefits should be seen as an investment in economic growth, rather than a financial burden.
Grimsby Garden Centre, operated by the not-for-profit organisation Navigo, is offering a unique way to support those dealing with mental health challenges. As part of its collaboration with NHS mental health services, the centre provides a therapeutic space where individuals can engage with nature and participate in gardening activities, which is proving beneficial for their mental wellbeing.
Martin, a volunteer at the garden centre, shared how spending time outdoors has positively impacted his life. "Being surrounded by nature really makes a difference," he said. "It’s been invaluable to me." Wayne, another participant, echoed these sentiments, noting that one of the best aspects of the programme is the welcoming community of people he has met.
The garden centre also receives referrals from other organisations, including Linkage College and Care Plus Group’s Employability Services. The centre currently supports around 40 participants weekly, offering them the chance to work in various areas such as the retail greenhouse, polytunnels, and an allotment for growing produce.
The initiative has not only provided therapeutic benefits but has also helped some individuals move into paid employment. Manager Craig Champion explained that the routine and structure of the centre give participants something to look forward to, helping them thrive both personally and professionally. "It’s fantastic to see them flourish in their lives," he said.
