Campaigning for better services

The National Audit of Seizure management in Hospitals (NASH) examines the facilities and care available to patients who attend emergency departments due to a seizure. About 100 000 people present to hospitals each year in England with an epileptic seizure.

Key findings of the latest NASH audit included:

• Half of people with known epilepsy attending the emergency department had not seen an epilepsy specialist in the previous year
• Two thirds may be taking inadequate epilepsy medication, indicating missed opportunities to improve treatment
• Over a third of patients with a suspected first seizure were not being referred onwards to any neurological or specialist clinic.
• Only 4 in 10 of those with established epilepsy were referred onwards.
• Fewer than a third of people who presented in A&E with possible seizures were given advice and information about future seizures
• People aged over 60 had worse rates of onward referral compared to younger people

Epilepsy12 is an audit of the services of health care for children and young people with suspected epileptic seizures.

The findings from the latest Epilepsy12 report revealed issues among children’s epilepsy services in England and Wales with referrals, information provision and school care plans:

• Three-quarters (77%) of children who should have been considered for epilepsy surgery had not been referred
• In one-fifth of care plans, there was no evidence that water safety had been discussed, and a similar proportion showed no evidence of information on general participation and risk being discussed. Only a third (32%) of children had a school Individual Healthcare Plan
• Less than half (43%) of children and young people with epilepsy, and their families or carers, had received information around Sudden Unexpected Death in Epilepsy (SUDEP) in the first year since diagnosis
• Mental health support services for children with epilepsy were also found to be lacking, with only 15% of Health Boards and Trusts being able to include these within epilepsy clinics.

In 2021/2022, The Neurological Alliance ran a survey – My Neuro Survey – to give a picture of the experience of care, treatment and support for people affected by neurological conditions.

Nationally, over 8,500 people with a neurological condition shared their experiences and reported:

• Delays to treatment and care can change your life forever.
  55% of adults and 60% of children and young people living with a neurological condition experienced delays to routine appointments with specialists in the last year​.
• Most people with a neurological condition are unable to access the mental wellbeing support they need.
  40% reported their mental wellbeing needs are not being met at all.
• Finding out you have a neurological condition is scary and confusing.
  Receiving the right information and support can make a real difference. 2 in 10 were not given an explanation of their diagnosis. Almost 4 in 10 adults reported not being given any information at all.

Over 1000 people who completed the survey had epilepsy and shared their experiences of epilepsy care and highlighted concerns about the provision of mental health care and long waiting times:

• 71% of respondents say their condition affects their quality of life to a moderate or great extent, and 61% would like a referral to counselling services but have not been offered it; 35% don’t feel their mental health needs are being met at all
• 59% of respondents were not asked about their mental wellbeing in the last 3 years
• 36% of respondents stated that they had waited more than 12 months to get their diagnosis after first experiencing a seizure
• 20% of respondents said they waited more than 12 months to see a neurologist