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Your guide to epilepsy misdiagnosis

Doctor's stethoscope

Epilepsy is one of the most common traumas that affect the brain but it can be difficult to diagnose accurately and treat adequately.

“Two thirds of epilepsy sufferers have no physically identifiable cause.”                         ( NICE - National Institute for Health and Care Excellence)

The causes of epilepsy are numerous and wide ranging.  In cases of epilepsy misdiagnosis, the symptoms can be confused with other conditions, most commonly a panic attack but also an irregular heart beat and even a migraine.

In cases where a patient may actually be suffering from epilepsy, the correct form of the condition may not be diagnosed. In other instances, patients are misdiagnosed with epilepsy when they may have a cardiac condition, which remains untreated as long as the misdiagnosis continues.

An epilepsy misdiagnosis could mean patients are given treatment or medication:

  • That doesn’t help them
  • Is harmful and may aggravate their actual condition
  • Leaves the real and unidentified condition untreated

The use of incorrect drugs and treatment prescribed because of a misdiagnosis can potentially be life threatening and can cause both the patient and their family unnecessary anxiety and stress.

Referral to a specialist...

There are a number of specific symptoms that help to identify different types of epileptic seizures. A GP or doctor should immediately refer a patient suspected of having epilepsy to a specialist for confirmation and to begin appropriate treatment.

If you have good reason to believe that you or a family member has not received the appropriate standard of care through a failure to diagnose and treat epilepsy, and that this has led to further harm and suffering, you need to find out if you have a genuine case of clinical negligence.

Starting a claim for clinical negligence is not always an easy decision and it can be a complicated process to find out the reasons why a doctor or hospital has breached their duty of care to you and your family.

Your Legal Friend has many years of experience in successfully resolving  clinical negligence cases.  Our specialist knowledge of both legal and medical issues, together with a sympathetic and sensitive understanding of how everyone involved is affected, means we can help you:

  • Find out the reason why something went wrong with a diagnosis, treatment or procedure.
  • Secure appropriate compensation to ensure that the financial demands of providing the necessary special care, support, treatment and equipment will be properly met both now and in the future.

Epilepsy is a common condition

  • Misdiagnosis rates for epilepsy in the UK are between 20 – 31 %.
  • 32,000 people in the UK are newly diagnosed with epilepsy each year – equivalent to around 87 new cases diagnosed every single day.
  • About 1 in 240 children in the UK aged 16 years and under are diagnosed with epilepsy.
  • About 1 in 67 people in the UK aged 65 years and older have a diagnosis of epilepsy.
  • More than 1 in 5 people with epilepsy have a learning disability.
  • 600,000 people in the UK - around 1 in 103 – diagnosed with epilepsy take anti-epileptic drug treatment.   (Joint Epilepsy Council, 2011)
  • Around 1,000 people in the UK die each year from epilepsy.           (NICE - National Institute for Health and Care Excellence, 2014 )

What is epilepsy?

Abnormal electrical activity in the brain causes an interruption and temporary change to brain signals. This causes sudden, repeated seizures and convulsions, and can lead to a loss of consciousness.

Defining epilepsy by seizure episodes

Epilepsy is a disease of the brain that can be defined by one of the following:

  • At least two unprovoked seizures occurring more than 24 hours apart.
  • One unprovoked seizure and a probability of further seizures occurring over the following 10 years.

Basic types of epileptic seizures

There are more than 40 types of seizures, which may be experienced and divided into two groups:

  • Partial seizures: one part of the brain experiences disturbances - includes jerking movements beginning in the face or hand and spreading to the limbs.
  • Generalised seizures: the entire brain is affected by disturbances including:

- ‘impairment of consciousness’ and becoming rigid

-  jerking with ‘impairment of consciousness’

-  fixed staring for a few seconds

-  a brief contraction of the limbs

-  a brief loss of muscle tone associated with falls.

Prior to complex partial seizures, unexpected tastes or smells may be experienced.

A continuous seizure or recurrent seizures without regaining consciousness can last for 30 minutes or longer.

Following a seizure, residual symptoms such as drowsiness, amnesia, or headaches may be experienced.

Common conditions with similar symptoms to epilepsy

Fainting - may be caused by prolonged standing, changes in posture, pain. Often precededby feeling faint, light headedness, blurring of vision, ringing in the ears.

Panic attacks - more common in people with known anxiety. Caused by stressful situations. May be preceded by fear and breathlessness. Typical symptoms include agitation, hyperventilation, and sometimes spasms affecting the hands.  One key difference between a panic attack and a seizure is that a panic attack usually does not lead to a loss of consciousness.

However there are further complications associated with these symptoms as hyperventilation can trigger an epileptic attack in people prone to epilepsy and seizures may cause someone to panic.

Cardiac arrhythmias (irregular heart beat) – affects people with structural heart disease and can be caused by exercise.  Typical symptoms include palpitations, breathlessness, or chest pain.

Non-epileptic attack disorders - more common in women than men by a ratio of 3:1. Caused by stressful situations.  The symptoms are similar to an epileptic seizure, with side-to-side head or limb movements and prolonged motionless collapse.

Diagnostic tests

MRI scanning - can identify possible causes such as scarring on the brain.

EEG - electrodes attached to the scalp can help detect unusual brain activity associated with epilepsy. However, readings can be normal in people with epilepsy, or may show minor changes in people without epilepsy.

Who is at risk of epilepsy?

It is important for a GP or doctor to take into account if the patient has the following:

  • A family history of epilepsy
  • A genetic condition known to be associated with epilepsy, such as childhood epilepsy syndrome
  • Childhood febrile seizures - convulsions brought on by a fever in infants or small children. Between 2–7% of children with febrile seizures will go on to develop epilepsy.
  • Previous infections affecting the brain or conditions such as a cerebral tumour
  • A brain trauma, especially a penetrating brain injury or surgery.

Epilepsy treatment and mistreatment

Epilepsy is treated using anti-epileptic drugs (AEDS).There are many different types of AEDS and it is usual for more than one AEDS to be prescribed at the same time.

AEDS are known to have wide ranging and often very intrusive side effects. When a number of AEDS are prescribed to be taken at the same time, there can sometimes be severe side effects which can be life changing.

Misdiagnosis of epilepsy – a claim for negligence?

Epilepsy is difficult to diagnose because:

  • There is no conclusive test to diagnosis the condition.
  • The person affected may have  no recollection of the seizure episodes, which makes it difficult to describe the experience to a doctor.
  • Epilepsy is caused by a large number of factors with a variety of triggers.

How Your Legal Friend can help you...

There can often be an enormous emotional hurdle to overcome before even taking the decision to seek legal advice. You also need to have confidence that your clinical negligence specialists possess the in-depth knowledge and experience of both the complex legal and medical issues involved in securing a successful claim.

To bring a claim for negligence in an epilepsy misdiagnosis, your case needs to demonstrate that:

  • Your GP failed to recognise the symptoms of epilepsy, or
  • Your GP mistook your symptoms for epilepsy, and/or
  • The start of your treatment was delayed because you were not transferred to a specialist promptly.

As experienced clinical negligence specialists, we will investigate your case to obtain answers and to make those responsible for their failure to provide you with an appropriate standard of care account for their actions.

Throughout the claims process, we are committed to acting in your best interests, providing you with advice and support every step of the way.  Above all we will fight to secure appropriate compensation for your pain, suffering and losses and to ensure that your medical treatment and care needs are properly met both now and in the future.