We exist to improve the lives
of everyone affected by epilepsy

2010 consultations

Most recent consultations

Liberating the NHS: Transparency in outcomes – a framework for the NHS

Submitted October 2010

This consultation asked for opinions on the new proposed NHS Outcomes Framework, put forward in the government’s NHS White Paper on healthcare reform.

In this response we argue for including indicators to show how care is improving (or not improving) for people with epilepsy on:

  • epilepsy related death
  • seizure freedom for adults
  • seizure freedom of under-18s,
  • emergency hospital admissions (and readmissions) for people with epilepsy

We also propose a Quality Standard based on care plans, and stress the importance of collecting and using good quality information on services.

Full consultation response

Equity and Excellence: liberating the NHS

Submitted October 2010

This consultation asked for opinions on the coalition government’s proposed reforms to the structure of the National Health Service in England. This includes the plans to give General Practioners the responsibility for commissioning primary and social care services.

This response includes our concerns about:

  • a lack of epilepsy knowledge among GPs who will be expected to plan epilepsy services
  • proper patient representation at local levels
  • use of NICE Clinical guidelines, Quality Standards and the NHS Operating Framework, and
  • the proposed changes impact on the doctor-patient relationship.

Full consultation response

NICE Clinical Guidelines 2011

Submitted September 2010

This consultation asked for opinions on proposed changes to the NICE Clinical guideline for epilepsy.

Epilepsy Action is supportive of the existing NICE Guidelines, and believes if fully implemented would provide a good standard of care for everyone with epilepsy, regardless of where they live.

This update provides much greater detail on the drug treatment sections of the 2004 guideline

We are pleased to see stronger guidance on repeat seizures and status epilepticus, preconception counselling and the ketogenic diet.

However, we are concerned that some of the new guideline recommendations, particularly regarding drug choice, do not reflect current or best practice. As always with guidelines, their impact and success depends on doctors putting them into practice.

Full consultation response

Your GP, your choice, your say

Submitted June 2010

This consultation asked for opinions on new proposals to give patients more choice in where to register with a General Practitioner (GP).

“In broad terms, Epilepsy Action supports the principles of the Department of Health’s proposal.

There are certain potential benefits for people with epilepsy, of introducing a more flexible GP registration scheme, such as the one proposed.

We are pleased about proposed increased flexibility of GP registration, which could have specific benefits for certain people with epilepsy. We agree that a local person being able to attend their local GP surgery should have priority over registering people from outside of the ‘catchment area’.”

Full consultation response

Care Quality Commission Assessments of quality 2010/11

Submitted April 2010

This consultation asked for opinions on how the Care Quality Commission should inspect health and social care providers. It also asked respondents to choose which topics should be selected for ‘special review’.

“Epilepsy Action would like to support the case for special reviews of Long term Neurological Conditions, and the Health and Social Care needs of Offenders.

Epilepsy Action believes long-term neurological conditions, including epilepsy, should be considered the highest priority for a CQC special review.

Any improvement has the potential to be very beneficial for the eight million people in the UK with a long-term neurological condition, half a million of which have epilepsy.

The needs of offenders is a significant yet forgotten area of health and social care. And while there are significant reforms underway in the sector, the impact of a special review could not be underestimated.”

Full consultation response

Proposals to implement 'generic substitution' in primary care, further to the Pharmaceutical Price Regulation Scheme (PPRS) 2009

Submitted March 2009

This consultation asked for opinions on whether ‘generic substitution’ should be introduced for prescribing in primary care.

“Epilepsy Action does not believe Option 3 is the preferred option.

Epilepsy Action strongly favours Option 2, provided anti-epileptic drugs (AEDs) are on the associated list of drugs not to be substituted. This option would be best to ensure that people with epilepsy are not put at unnecessary risk.

Epilepsy Action strongly believes AEDs should be excluded from any automatic generic substitution. There is strong evidence that brand switching for many people with epilepsy has caused breakthrough seizures, worsening of their seizure control or worsening of side-effects.

Option 2 with AEDs on an exclusion list has the potential to improve the healthcare of some people with epilepsy. Currently many prescribers and pharmacists are ignorant to the problems that can occur when a patient switches between versions of an AED. Including AEDs on a list of drugs not to substitute would reinforce the message that consistently receiving the same AED is of clinical importance. This may lead to more secure treatment plans for large numbers of people with epilepsy. This would go some way to ensuring that people with epilepsy receive the best available treatment.”

Full consultation response

Paying for Care in Wales

Submitted February 2010

This consultation asked for opinions on how social care in Wales should be funded.

“Epilepsy Action is not in a position to comment on how social care is funded. Epilepsy Action does not indicate a preference for either a nationally or locally administered scheme. However we would like to state the belief that any National Care Service should be truly national (England and Wales), and not create disparities between the levels and quality of services in different regions.

Epilepsy Action would urge the Department for Health and Social Services (DHSS), when constructing specific proposals, to consider the effects of changes, and any new system, on working-age disabled adults.

Epilepsy Action believes that a good social care system would require a good assessment of the user’s needs.

We believe that the DHSS should ensure that a National Care Service is properly integrated with the National Health Service, to allow both schemes to share knowledge and resources where they can.”

Full consultation response

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