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 epilepsy.
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 Paper)
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 this.
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 Payment (PIP).
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 choose between.
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.
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