We exist to improve the lives
of everyone affected by epilepsy

Consultation responses

When government departments and other organisations want to introduce changes they usually ask the public what they think of their plans. This is called consultation.

Epilepsy Action frequently receives consultations and responds on behalf of people with epilepsy. As a membership organisation, we want to everyone with an interest in our work to see exactly what we are saying on their behalf.

Below is a selection of consultations and calls for evidence that Epilepsy Action believe are most important to the lives of people with epilepsy. Epilepsy Action is committed to developing consultation responses on policies that could benefit people living with epilepsy, if we have the necessary expertise and evidence available. It is worth checking this page regularly as new consultation responses will be listed here - please add this page to your bookmarks or favourites.

We are keen to get feedback on the responses that we have sent to consultations on behalf of people with epilepsy.

If you have any comments to make, or would like information on our latest consultation responses, please contact one of Epilepsy Action's Senior Policy and Campaigns Officers by emailing campaigns@epilepsy.org.uk

Past submissions

Submission to the Select Committee Inquiry – Employment and Support Allowance (ESA) and Work Capability Assessment (WCA) [joint submission by Epilepsy Society and Epilepsy Action] - 21 March 2014

Epilepsy Action and Epilepsy Society put in a joint submission of evidence to the select committee.

Northern Ireland Assembly Committee Inquiry into Post Special Educational Need Provision in Education, Employment and Training for those with Learning Disabilities – 21 March 2014

Epilepsy Action Northern Ireland response to the Northern Ireland Assembly Committee’s call for comment on the proposed Terms of Reference for the above review.

Clinical Commissioning Group Outcomes Indicator Set (CCG OIS) - 3rd March 2014

 There are three areas where we believe that the scope of the Outcomes Indicator Set could legitimately be increases to include neurology. These are Reducing premature mortality from the major causes of death, Antenatal care and Maternity).

Neurological Conditions Development Plan for Wales - submitted 30 January 2014

Epilepsy Action contacted members of our Welsh Advisory Panel to discuss this plan. We also promoted the Welsh Neurology Associations patient survey. The plan set out it’s vision for how services would look and be delivered in Wales.

Read our official response here

Northern Health and Social Care Trust Draft Assistance Dogs Policy - submitted 17 October 2013

For this consultation Epilepsy Action worked with Support Dogs UK to for constructive comments to help inform the Northern Health and Social Care Trust’s Draft Assistance Dogs Policy. Some of the suggestions that we made included:

  • Clarifying the language used – seizure alert dogs are known as ‘support dogs’
  • Providing details on how support dogs will behave during an alert situation
  • Having a procedure in place for emergency admissions
  • Read the full submission here

Joint submission (with the Epilepsy Society) to the Fourth Independent Review of the Work Capability Assessment. Submitted 27 August 2013

Epilepsy Action and Epilepsy Society worked together on a joint submission of evidence to the fourth independenet review of the Work Capability Assessment conducted by Dr Paul Litchfield. The review was limited to the Work Capability Assessment only and did not include any general questions relating to Employment Support Allowance. Thank you to everyone who shared their personal experience of the work capability assessment and completed the survey.

Consultation on the PIP assessment Moving around activity. Submitted 1 August 2013

This is the Epilepsy Action submission to the DWPs consultation on the Moving around activity within the Personal Independance Payment. We do not believe that using 'distance able to move unaided' is a fair or accurate way to measure the additional costs incurred due to reduced mobility following a seizure. Thank you to the 175 people with epilepsy and their carers who shared their own personal experiences and helped to inform our submission. 

Inquiry into the management of long term conditions
Submitted April 2013

This is Epilepsy Action’s submission to the House of Commons’ Health Select Committee, for their inquiry into the management of long-term conditions.

All Wales Medicines Strategy Group – perampanel
Submitted March 2013

For this consultation, we provided information to inform the All Wales Medicines Strategy Group on whether the anti-epileptic drug perampanel should be made available to people with epilepsy in Wales.

Written Evidence to the Public Bill Committee for the Children and Families Bill: Health Conditions in Schools Alliance
Submitted March 2013

Epilepsy Action is a member of the Health Conditions in Schools Alliance. The members of the Alliance recently made a joint submission that calls for an amendment to the Children and Families Bill. We have asked for an amendment that would ensure access to support in schools for any child with a health condition.

Evidence to the Joint Committee on the draft Care and Support Bill
Submitted January 2013

In this consultation, we welcomed the draft Care and Support Bill, as it could potentially the quality of life of some of people living with epilepsy in the UK and their carers and families. We then answered specific questions on the draft care and support bill. This included our views on the bill and whether it will lead to better integration between healthcare, social care and housing, fairer access to care and support, and strengthen support for carers.

Service specifications (England)
Submitted January 2013

In this set of consultations, Epilepsy Action provided feedback on the ‘service specifications’ for some neurological services that are due to be commissioned by the NHS Commissioning Board.

These ‘service specifications’ include:

NHS Commissioning Board policies - VNS and DBS (England)
Submitted January 2013

In these two consultations, Epilepsy Action input to policies for providing two epilepsy treatments. These policies on the suitability and availability of vagal nerve stimulation (VNS), and on the suitability and availability of deep brain stimulation (DBS).

NHS Constitution
Submitted January 2013

In this consultation response, we provided thoughts on the proposed amendments to the NHS constitution. This included calling for:

  • a right to care planning for people with a long-term conditions
  • a right for people with epilepsy to be given any treatments that have been approved by the National Institute for Health and Clinical Excellence (NICE).

We also supported the suggested changes made by National Voices in their submission.

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