St. Elizabeth’s, Hertfordshire
SUPPORTING VULNERABLE CHILDREN & ADULTS
Based in Hertfordshire, St. Elizabeth’s supports over 200 vulnerable children and adults with severe learning disabilities and complex medical needs, often caused or complicated by epilepsy and/ or autism.
They offer medical, educational, and residential support, providing specialist care 24-7, helping to keep their community safe and happy, whilst enabling them to live life to the fullest. Creating opportunities and increasing independence through skills development is at the heart of St Elizabeth’s mission.
Today, St. Elizabeth’s is the only UK charity providing specialist care, education, and living facilities for people of all ages with severe epilepsy and other complex needs.
This is Personal
Hadley, the 14-year-old son of Darren Clawson, (founder of ‘Endurance Limits’), developed severe epilepsy as a young boy. As a result, he has severe physical and learning disabilities.
Requiring specialist care, 24-7, Hadley lives and studies at St. Elizabeth’s.
Hadley’s complex health conditions, his physical and learning disabilities, and his speech difficulties, mean that he relies on the specialist Health and Therapy Teams to keep him safe, to manage his seizures and to support his development.
Our Goal – A New Health Centre
St. Elizabeth’s has embarked on a large-scale fundraising drive to upgrade their facilities, so they can establish a bespoke specialist Health Centre at their rural Hertfordshire site.
Everyone at St Elizabeth’s has profound learning disabilities often coupled with a severe complex health condition. Many have severe epilepsy, with associated severe learning disabilities, mobility issues, communication problems and behavioural challenges. For many, their condition cannot be fully managed by medication, and they can have regular seizures, some up to 20 a day, which can put them at serious risk.
St Elizabeth’s provides specialist education and skills development programmes, as well as accessible and specialised accommodation. But what makes them particularly special is their on-site 24/7 health service and therapy team. This means that every child or adult can access the medical support they need, when they need it, and their care and treatment can be built into their every day life, rather than constantly needing to attend hospital appointments and clinics. This means less disruption to their education, faster, more immediate care, less distress and more continuous support. They can also receive emergency care in the case of a seizure, or other health crises, even in the middle of the night.
They are looking to refurbish, modernise and kit-out their current health provision, to provide a bespoke Health Centre where they can run on-site Neurology, Epilepsy, Psychiatry and general Health clinics, and link up with their therapy provisions to offer a more holistic model.
This would ensure they could deliver much more nursing support on-site (rather than rely on off-site provision) and could expand their expertise in EEGs (Electroencephalograms), VNS (Vagus Nerve Stimulation) Therapy (both epilepsy focused treatment and monitoring approaches) and PEG Feeding and support.
It would also enhance their ability to support international world-renowned research programmes in epilepsy / learning disability. Linking up with Great Ormond Street and the National Hospital for Neurology and Neurosurgery, providing data, monitoring and reports as required to feed research papers and clinical trials, means that they will ultimately be helping to improve the knowledge and treatment of epilepsy and other complex neurological disorders, and so potentially the lives of thousands of people.
To reach our goal, we need YOU ONBOARD!
Approximately 30% of Epilepsy cases are classed as having drug-resistant or intractable epilepsy, where seizures persist despite the appropriate use of two or more AED’s and the possibility of achieving seizure freedom with additional medication is extremely low.
Matthew Williams (24) suffers with a catastrophic form of epilepsy called ‘Dravet Syndrome’ and his seizures started when he was 9 months old. Emma, his mother, asked if Matthew could try the Ketogenic Diet when he was 2 years old, but she was told the diet didn’t work. So she battled on, trying innumerable medications which didn’t help Matthews’ seizures and which caused devastating side effects. Six years later, Professor Helen Cross began a research trial of the Ketogenic Diet at Great Ormond Street Hospital (GOSH).
Matthew and 144 other children with severe epilepsy were enrolled on the trial. Within 2 weeks of starting the diet Matthew’s seizures had reduced by 90% and within 8 months he was weaned off all medication. Sadly for Matthew, the damage had been done. Years of seizures had caused terrible brain damage, his family had broken apart and Emma was now a single mum to Matthew and his younger sister Alice.
Inspired by Matthew, she set up Matthew’s Friends in 2004 to provide information, education, training, support and resources for other families wanting to use ketogenic therapies.
In 2013 Emma was honoured with an MBE from HM the Queen for services to children with epilepsy.
There has been a resurgence of interest in Ketogenic Dietary Therapies for children in recent years, due to its efficacy in otherwise intractable cases. The treatment has been clinically validated in a number of studies and a randomised controlled trial from Great Ormond Street Hospital.
To reach our goal, we need YOU ONBOARD!
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