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of everyone affected by epilepsy

2012 consultations

Epilepsy in adults – Quality Standard

Submitted October 2012

 This consultation document, launched by the National Institute of Health and Clinical Excellence (NICE), proposed a draft Quality Standard to apply to adults with epilepsy.

A Quality Standard is made up of Quality Statements. These Quality Statements set out the services that should be provided, and the standard of care that people should receive if they have, or are suspected of having, a medical condition.

Epilepsy Action commented on the 10 draft Quality Statements that would apply to adults with epilepsy (or suspected epilepsy). Overall, we welcome the draft Quality Standard and believe it covers many of the key points on the epilepsy care pathway. However we have proposed some changes to the draft, as well as additional Quality Statements.

Read Epilepsy Action’s full submission.

 

Epilepsy in children – Quality Standard

Submitted October 2012

This consultation document, launched by the National Institute of Health and Clinical Excellence (NICE), proposed a draft Quality Standard to apply to children with epilepsy.

Epilepsy Action commented on the 10 draft Quality Statements that would apply to children with epilepsy (or suspected epilepsy). While many of the Quality Statements are very similar to those in the draft version for adults, there are some small differences that apply just to younger people.

Overall, we welcome the draft Quality Standard and believe it covers many of the key points on the epilepsy care pathway. However we have proposed some changes to the draft, as well as additional Quality Statements.

Read Epilepsy Action’s full submission.

 

Report of the Children and Young People’s Health Outcomes Forum Children and Young People’s Health Outcomes Strategy (England)

Submitted September 2012

The Children and Young People’s Health Outcomes Forum released a report yesterday which could be good news for children and young people with epilepsy. The Forum has made several recommendations to ultimately improve healthcare for children and young people.

The Forum looked at the two current outcomes frameworks:

  • NHS outcomes framework – which is used to see how well the NHS is performing in provide good healthcare.
  • Public health outcomes framework – which aims to tackle public health challenges.

The Forum looked at these frameworks to see how the NHS included children and young people in their aim to improve healthcare.

The report argues that early diagnosis and treatment is key in delivering good quality care. Evidence shows that delayed diagnosis and start of treatment is a contributory factor to long term poor health and increased risk of death. The Forum suggests a new indicator should be included in the NHS Outcomes Framework. This is to monitor the diagnosis and treatment of children and young people with health conditions, including epilepsy.

Epilepsy Action provided information to the Forum to make sure epilepsy was considered in their research and recommendation. We will continue to work with the Forum and look at ways to make sure the recommendation of this indicator is adopted.

Read the full report

Quality Standards process guide

Submitted March 2012

In this consultation we commented on the proposed process for developing ‘Quality Standards’, the new guides to good health and social care services by the National Institute of Health and Clinical Excellence (NICE).

Read our full submission

Potential indicators for the Commissioning Outcomes Framework

Submitted March 2012

This consultation looked at the proposed indictors to be included in the Commissioning Outcomes Framework, which will help evaluate effect commissioning of health services in England.

We agreed with the inclusion of indicators to record hospital admissions for people with epilepsy under 19 years old. However we proposed that this indicator be extended to include all people with epilepsy, not just those under the age of 19.

We asked for an indicator to record the number of epilepsy related deaths, and for work to start on a separate subsection on epilepsy.

Read our full submission.

SIGN guideline on diagnosis and management of epilepsy in adults: scope

Submitted February 2012

The Scottish Intercollegiate Guidelines Network (SIGN) consulted on the areas of health and social care it should look at in its update of Guideline No 70: diagnosis and management of epilepsy in adults.

We strongly recommended that a full revision is undertaken and that the scope of the review is not limited. This is so all advances in information and treatment in the last nine years can be considered for inclusion, and information that is already out-of-date will not be republished.

We made specific recommendations for areas that should be looked at including drug safety, bone health and use of the ketogenic diet.

Read the full consultation response.


The Welsh Medicines Partnership – buccal midazolam (Buccalam).

Submitted February 2012

In this consultation we set out why we believe buccal midazolam should be routinely available for the treatment of prolonged, convulsive seizures in infants, children and young people.

We inform the Welsh Medicines Partnership about epilepsy, and discuss instances where buccal midazolam is the preferred rescue medication (over others such as rectal diazepam).

Read the full consultation response.

 

Personal independence payment assessment thresholds

Submitted January 2012

Epilepsy Action is concerned that inappropriate application of the descriptors within the daily living activities could fail to provide adequate support to people with fluctuating and potentially disabling conditions such as epilepsy. 

Although the explanatory notes call for the assessor to give consideration to risk, Epilepsy Action would welcome ‘risk’ being included in the scoring criteria of each daily living activity. This would show that significant risks to health and safety (should a seizure occur) are fully considered.

Read the full consultation response

 

Consolidation and review of UK medicines legislation (MLX 375)

Submitted January 2012

In this consultation, we cautioned against a proposed change to regulations that would permit pharmacists to alter a prescription without consulting with its prescriber.

We do not oppose or object to the principle of pharmacists altering a prescription if it has an obvious error. However we raised a concern that they should only be altered when an error has clearly occurred.

We do not, for instance, believe that it would be appropriate for a pharmacist to alter a brand name or version of a drug, if a person has a history of receiving that version.

We asked the MHRA for clarification as to when it is or is not appropriate for a pharmacist to alter a prescription.

View the full response here.

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