Building on success for people in Scotland living with epilepsy
On the edge of a small village in the countryside beyond Glasgow sits an unassuming single-storey building. At first glance, it looks no more than an ageing, strangely extended bungalow, yet it provides a lifeline for people in Scotland living with epilepsy. These people are often without help, or even hope, before discovering Hunter House."I'd be six feet under without this place," says Eileen Sture."The staff are amazing."
Despite such passionate testimonies - Eileen's is one of many - and the real need Quarriers fulfils, the service may face closure.
Hunter House is an epilepsy assessment unit and the only facility of its kind in Scotland. Patients are able to stay overnight, for anything up to 8 weeks, to determine cause and best treatment for their seizures. With a significant proportion of people misdiagnosed with epilepsy (21 to 30%), the service we provide is vital.
While the out-dated building could be renovated, and our equipment could be updated, there is one thing we can't change: many residents confront complex health issues requiring access to 24-hour medical cover which we cannot provide at our remote site.
Looking to the future, we have taken a blank-sheet approach. Our plans to build on the success of the past 100 years are driven by one imperative question: How can we best meet the needs of people in Scotland living with epilepsy? Now is the time to look at the service we provide and see what we need to do to ensure its long-term survival. Please have a look at our vision for a new Epilepsy Centre for Scotland.
Patient Case Study
Recently a lady with the following history was admitted to the epilepsy centre for assessment. She was in her mid thirties and had been diagnosed with epilepsy as a child. She had no family history of epilepsy and throughout childhood there was a dispute as to whether she had reflex anoxic seizures or epilepsy. When she was 13 all of her anti epileptic drugs (AED’s) were withdrawn successfully and she had several years of seizure freedom afterwards. Eight years ago she again presented with seizures and was commenced on AED’s but seizure control was poor. At this time video telemetry at hospital confirmed that her typical events were in fact non-epileptic seizures (NES). However a relative’s description of some of her seizures were suggestive of nocturnal tonic clonic seizures. Her consultant recommended an admission to Quarriers Epilepsy Centre at this time for further monitoring and withdrawal of AED’s.
Due to childcare commitments her assessment at Quarriers was limited to 2 weeks and during this time her AED’s were withdrawn in a safe environment and no seizures were witnessed or recorded. During her assessment she disclosed there was an ongoing investigation into sexual abuse within her family. She was diagnosed with NES, which she accepted and understood following explanation. After this she was discharged on no AED treatment with advice to her and her family to contact the service if seizures reoccurred.
At an out patient review appointment a seizure description from her young daughter was again suggestive of nocturnal tonic clonic seizures and she was recommenced on AED’s with diagnosis of Epilepsy and NES. Her epilepsy was managed by secondary care for the next 4 years and her seizure control remained poor with numerous hospital admissions via accident and emergency for clusters of seizures. Her daughter was by this time taking on a greater caring role for her mother. During her hospital care she was on 2 AED’s and had a further period of video telemetry during medication reduction where no seizures were recorded. Her consultant recommended a further admission to Quarriers Epilepsy Centre to clarify the diagnosis and reduce her AED medication.
She was admitted to Quarriers initially for 4 weeks which was extended to 6 weeks. Her AED’s were withdrawn and she then had a period of video telemetry, in patient ambulatory EEG and was sent home on ambulatory EEG for 2 days. One typical NES as confirmed by family was recorded at the start of her assessment and no further evidence of seizure activity was found during the 6 week admission. After a period of 2 weeks off all her AED’s she was discharged with a diagnosis of NES and advice was given to her and her family about possible causes and management strategies. There will be close contact with her over the next few months and her daughter has been asked to video record any events on her mobile telephone in order to rule out epilepsy.
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