National Quality Board engagement exercise - library of NICE Quality Standard topics
Submitted October 2011
In this consultation, we set out why we believe Quality Standards for
epilepsy (adult) and epilepsy (children) should be priorities when
compiling the library of NICE Quality Standards.
We set out the main areas of inequality in the treatment of epilepsy, and how a Quality Standard could help address these.
This response includes a list of suggested statements that could be included in the epilepsy Quality Standards.
We also support other suggested topics for Quality Standards that may be
beneficial to the health and social care treatment of people with
NICE Clinical Guidelines 2011 (draft version 3)
Submitted August 2011
This consultation asked for feedback on the third draft of the updated NICE Clinical guideline for epilepsy.
We are pleased that the Guideline Development Group has addressed many of the issues we raised in the second consultation.
However we made suggestions that would effect:
- The number of people with epilepsy in the guideline notes.
- Including retigabine in the guideline recommendations.
- The treatment of women (including drug interactions with contraceptives).
- Recommending levetiracetam as a first-line treatment for focal seizures because of current and future generic costs.
Proposals for making the NICE clinical guideline development process more efficient
Submitted July 2011
In this consultation, Epilepsy Action responded to proposals from the
National Institute for Health and Clinical Excellence (NICE) to change
the NICE Clinical Guideline consultation process.
We disagreed with the proposal to shorten the overall consultation period from 17 to nine weeks.
We state that we do not believe the time for patient groups and other
stakeholders to respond should be reduced. Patient groups can have
difficulty meeting even the current deadlines.
Support and aspiration: A new approach to special educational needs
and disability (The Special Educational Needs and Disability Green
Submitted June 2011
This consultation was very lengthy and focused on education and health.
The consultation asked for feedback on proposed changes to the current
assessment process special educational needs.
We commented on the wide-ranging plans from identifying needs in Early
Years settings to ideas to reduce the frustrations of children and young
people and their families to getting the right support.
In particular Epilepsy Action welcomes the proposal of a single
statutory assessment and the production of an Education, Health and Care
plan; however we are concerned about how this will work practically at a
local level. We also proposed that every child and young person with
epilepsy has an assessment conducted soon after diagnosis.
We also strongly recommended we would like to see an improvement to the
data collection on SEND needs in each area. The incidence of SEND would
then be better understood and services can be planned carefully.
Driving Licence Standards for Vision, Diabetes and Epilepsy
Submitted April 2011
In this consultation, we commented on the proposed new driving
regulations for people with epilepsy in the UK. These changes are part
of introducing a European Union directive. This directive will make the
laws about driving and epilepsy similar across the European Union.
We are broadly in support of the changes to the UK Driving Standards for
epilepsy. The evidence for road accidents caused by seizures appears to
support relaxing the current guidelines.
We agree that someone with epilepsy should qualify for a driving licence if they have been seizure-free for one year.
We support the directive’s recommendation for sleep-only seizures. This
would mean that people who only have seizures while asleep, and have had
no other type of seizures, can apply for a driving licence after one
year. At the moment this is three years.
Epilepsy Action agrees on introducing a new rule for people who only,
and have ever only, experienced seizures that do not affect
consciousness or the ability to act.
We also agree that people with epilepsy should not continue to drive
once they have begun withdrawing from successful treatment. However the
proposed UK regulations will be stronger than the EU recommended
regulations, and we do not believe there is enough evidence to justify
We disagree with the UK, and agree with the EU recommendation, regarding
a first unprovoked epileptic seizure. The EU states a person can be
declared able to drive after a period of six months without seizures,
but the UK recommends twelve months. We do not believe the UK’s position
reflects available research.
Disability Living Allowance reform
Submitted February 2011
This consultation asked for comments on proposals to replace Disability
Living Allowance (DLA) with a new benefit called Personal Independence
We are not sure how different PIP will be from DLA, and need more detail before we can make a judgement.
We stress that under any changes, it is important that people with
epilepsy do not lose out. This especially includes the 4,500 people with
epilepsy currently receiving the lowest care component of DLA.
For PIP, we want people to be assessed on a case-by-case basis, with the
right support given to each person after their individual needs have
been taken into account.
We believe an assessment needs to take into account more than a single
meeting involving the claimant and an assessor. The assessment needs to
accept that the needs of someone with epilepsy may not be the same every
day or every week.
We also oppose removing the mobility component of DLA for people in
residential care. We want to see the PIP mobility component available
for everyone who needs it, regardless of whether they live independently
or in residential care.
NICE Clinical Guidelines 2011 (draft version 2)
Submitted January 2011
This consultation asked for feedback on the second draft of the updated NICE Clinical guideline for epilepsy.
We are pleased that the Guideline Development Group has addressed many of the issues we raised in the first consultation.
We accepted that many of the epilepsy community’s criticisms of the first draft were outside of the scope of the review.
We again asked for levetiracetam to be included as first-choice drug for those seizures types where it is already widely used.
We repeat our request to include more information on the risks that some anti-epileptic drugs can pose to bone health.
Liberating the NHS: Greater choice and control
Submitted January 2011
This consultation asked for answers to a series of questions on how
‘choice’ can improve patient care, and how more people can make their
choices about their NHS care and treatment.
Epilepsy Action said that people with epilepsy want easy-access to high
quality, local treatment, from people they trust. Choice for epilepsy is
going to be difficult, as there are not enough quality options to
We know that for people with epilepsy to use choice in what and where
they receive treatment, a person needs to have information. This is
because information is the key to good choice. We believe people with
epilepsy should be offered choice at every step of their care, as long
as this is supported by information and the help of medical experts.
We also pointed out some of the things that may stop choice from
working. Some people with epilepsy, particularly the most vulnerable,
can be limited by their travel arrangements. We wanted the Department of
Health to know that it would be a mistake to consider patients as
‘consumers’ or ‘shoppers’. The behaviour we use when we ‘shop’ is
different to how we choose to support our health. For example, we may
care more about how close we live to a hospital, than we do about its
official Department of Health rating.
Liberating the NHS: An Information Revolution
Submitted January 2011
This consultation asked for opinions about how the NHS can provide good,
accurate information to patients, and how to best use the information
the NHS currently has.
We believe it is vital to focus on providing information during the
delivery of care and treatment. This includes correct, easy to access
advice at diagnosis, referral and treatment. Information should be built
in to the standard medical appointment, and into the course of
treatment for all conditions. All medical staff should have
responsibility to offer, provide and discuss information.
Among other things, Epilepsy Action talks about information
prescriptions, patient information leaflets, seizure diaries and care
plans, and accessing information online and off.