An eight-year-old girl from Cheshire, named Hayley, has made medical history as the first child to undergo a groundbreaking brain surgery designed to alleviate symptoms of her Dystonic Cerebral Palsy. Dystonia, a chronic neurological disorder, triggers involuntary and often painful muscle spasms.
In January, a team at Alder Hey Children's Hospital in Liverpool conducted an advanced deep brain stimulation (DBS) procedure involving the placement of minute electrodes, as tiny as a grain of rice, into Hayley's brain region controlling movement. These electrodes are linked to a battery implanted under the skin, which sends electrical pulses to modify the problematic signals causing dystonia. This innovative surgery is aimed at reducing Hayley's pain and improving her communication abilities.
The electrodes also collect real-time data on brain activity, allowing surgeons to adjust stimulation settings for optimal results, a feature enhanced by the new BrainSense technology from Medtronic. Consultant Neurosurgeon Jonathan Ellenbogen highlighted the importance of this capability, especially for non-verbal patients like Hayley, in customising treatments.
Hayley, born prematurely at 24 weeks, has severe communication challenges due to her uncontrollable movements. Her father, Gareth, expressed the difficulties in understanding her needs, noting that traditional communication methods like Makaton or Sign Language are not viable. They hope the surgery will enable better head control, allowing Hayley to use eye-tracking technology for communication.
The Newcastle Rugby Foundation has introduced a new rugby programme designed for individuals with learning disabilities. This initiative, established in collaboration with Wooden Spoon Durham and Wooden Spoon Northumberland, kicked off this week at Kingston Park Stadium. It includes specialised rugby sessions that cater to the unique needs of its participants.
The programme, which is inclusive and open to participants of all skill levels, seeks to make rugby accessible to more people, particularly those with additional needs. It's part of a broader effort to enhance community involvement and provide a sense of inclusion and empowerment among participants and their families.
The sessions are designed to not only improve physical fitness but also to build teamwork and enhance skills, with opportunities for participants to compete in national matches against other learning disability teams.
Iain Stewart, the chair of Wooden Spoon Northumberland, expressed enthusiasm for the initiative. "We are thrilled to back the Newcastle Rugby Foundation's Learning Disability programme. It aligns perfectly with our National Game Changer campaign, which is dedicated to offering young people with disabilities the opportunity to engage in rugby," he stated.
Mental health social workers from Cumberland Council's urgent care team are planning a two-week strike starting April 24th to protest their job grading. This team, crucial for conducting mental health assessments and making detention decisions under the Mental Health Act, has previously engaged in 48-hour and 72-hour strikes in March.
A GMB union representative emphasised the team's critical expertise and dedication. In response to the upcoming strike, the council assured that "emergency cover" will be in place, collaborating with the NHS to maintain necessary support for residents.
The strike is scheduled to begin at 09:00 GMT on April 24th and conclude at 09:00 GMT on May 8th. Fran Robson, a GMB organiser, expressed the necessity for the council to acknowledge the workers' value and consider a fair re-evaluation of their roles. The escalation comes after the workers felt compelled by the lack of action on their grading issues.
The workers' current annual salaries range from £48,474 to £49,498, according to council data. The council, led by Labour, mentioned that the role was last regraded in 2019, and a subsequent request in 2022 was denied due to the absence of "significant changes" in the job's scope.
The UK's first performing arts centre designed for autistic individuals with complex needs, spearheaded by Berkshire-based charity Prior’s Court, has surpassed the £1 million fundraising mark. Scheduled to open in the 2024/25 school year, the Let Me Shine Performing Arts Centre will feature adapted facilities for engaging autistic youth in music, dance, and drama.
Significant contributions have come from The Gosling Foundation, The Cadogan Charity, The Alchemy Foundation, The Gerald Palmer Eling Trust, and The Beatrice Laing Trust. Additional funds were raised through individual efforts including Mark Bailey of Prior’s Court completing a 24-hour cycling challenge, James Gordon and Evie Merry from Karcher UK participating in a half marathon and 10k run, and Zoe Brown from Charles Hunter Associates competing in a white-collar boxing event.
Fundraising Manager Natalie Norris expressed gratitude for the support that has enabled the project to reach this significant milestone, highlighting the transformational impact of the arts on autistic youth. The centre will not only simulate theatre environments but also include an outdoor performance space to aid those uncomfortable with indoor settings.
With £115,000 still needed, the funds will complete the outdoor area, facilitating a smoother entry into the performing arts. The project also aims to establish best practices in arts accessibility for autistic individuals, with plans to share these insights across educational and performing arts sectors nationally and internationally.
The Nuffield Trust has reported a significant surge in the need for autism assessments and ADHD treatments in England, surpassing the National Health Service's (NHS) ability to deliver timely care. Since 2019, there's been a fivefold increase in individuals awaiting autism specialist consultations and a 51% rise in ADHD medication prescriptions. This escalation in demand has led to extended waiting times and backlogs.
As it stands, about 25% of individuals referred for ADHD are enduring waits of up to two years for their initial assessment, a situation further exacerbated by widespread medication shortages. Similarly, the timeframe for autism assessments has seen a dramatic increase, with reports of waits extending beyond two years in certain areas.
The call for action extends beyond healthcare professionals to encompass a broader societal adjustment towards embracing neurodiversity. Leading charities are urging the creation of a cohesive strategy to offer improved early support for neurodivergent individuals.
In response, the Department of Health has unveiled plans to tackle these delays head-on, including the establishment of a new ADHD taskforce and the allocation of additional funds aimed at bolstering support for neurodiverse children within the educational system. These steps represent a critical acknowledgment of the need for both immediate and long-term solutions.
Recent research has revealed that expenditure on school transport for children with special educational needs and disabilities (SEND) in England has nearly doubled in five years. Local authorities are expected to spend £1.4bn in 2023-24, up 95% from £728m in 2018-19, to fulfil their legal obligation to provide free transport for SEND students who can't walk to school.
The government has acknowledged the issue, committing £2.6bn towards creating special school places, which aims to reduce the need for long-distance travel and associated costs. However, council leaders point out that a spike in demand and more complex cases have escalated costs. Over 40% more children, totalling over 183,000, now require transport services, pushing the average annual cost per child from £6,280 to £8,299.
Surging transport costs for children with special educational needs (SEND) are straining council budgets, prompting considerations like means-testing to maintain system viability. High expenses, exemplified by Buckinghamshire’s daily £952 for two students' medical transport, underscore the financial challenges faced. The debate includes the need for closer special education provisions to cut travel costs. The Department for Education aims to mitigate these pressures by increasing special education placements, addressing both educational accessibility and financial sustainability for councils.
