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Today my colleagues enter into the spirit of Purple Day where we raise awareness of the impact of epilepsy on those who suffer this complex and challenging condition. If you are not already sporting your best mauve gear, you may notice the starkly explicit advertisement in The Independent, which shows the real impact of epilepsy as a photograph of one young woman’s post-seizure black eye.
If you work with people with learning disability there is a strong likelihood that you have experience of epilepsy and its management, as research suggests that the condition is significantly more prevalent in this population. For people with mild to moderate learning disability, some 15% are likely to be affected, rising to 30% and reported as potentially 50% in those with profound and severe learning disabilities. Many of the people you support will be on medication regimes to manage their epilepsy and you will have care plans that detail how best to manage seizures and ensure safety and allow them to live full and ordinary lives.
The link between epilepsy and learning disability is that both are symptoms of an underlying brain damage or dysfunction. Importantly, it is not a given that people with intellectual impairments will have epilepsy and so there is a risk of misdiagnosis, suggested to be up to 38%. This can be due to mistaking behaviours, tics, or medication side effects as seizure activity.
Managing epilepsy is a central part of care planning in an affected person, since the condition itself as well as the management can have a profound affect on quality of life. Its important to report all seizure activity as this will provide information on triggers, frequency and effects to help inform risk assessment and care. Alongside recording the date, time, type and duration of seizures, note the level of awareness the sufferer has and how they describe the experience. Be alert to changes in type and frequency as this can be an indication of how effective medicines are and of any possible underlying health problems.
Ensure that people you support with epilepsy have regular medical checks and that these are supported to include the Service User in decisions and choices as much as possible. Its good practice to ensure a longer appointment at the doctor or clinic to give time for explanation and discussion. Note that many epilepsy treatments can cause side effects, so be alert to what these are and ensure you report them to the doctor if they affect your client.
Cotton wool wrapping is not essential to help people with a diagnosis of epilepsy enjoy ordinary lives; but bear in mind the risks and support their management through informed and vigilant staff support, and purple or not, make sure everyone is in the know.
Ginny Tyler – QCS Learning Disability Expert Contributor