Campaign Supporters Group newsletter, April 2010

Dear supporter,

Welcome to this stripped-down issue of the Campaign Supporters’ Group newsletter. The reason for the simple layout is that we are in the process of relaunching the group and we are spending some time working on a redesign. We will be in contact with you again before the next ‘official’ newsletter. We will be asking what more you would like from the Group and the newsletter, and where you think Epilepsy Action’s campaigning priorities should lie.

In the meantime, there is still a lot we are working on, and a lot we hope you can get involved in.

Best wishes,

Pete.

Campaigning roundup

Time for change

In 2010 Epilepsy Action is continuing its Time for change campaign for better epilepsy services. Partly as a result of last year’s work (the Time for change report, the Early Day Motion and the National Epilepsy Week lobbies), the Department of Health agreed to hold the first ever joint conference on epilepsy. This was attended by delegates from the public, private and voluntary sector.

The event, called “Best Value, Better Care – Commissioning Epilepsy Services,” took place in February, and was set up to show how epilepsy can affect someone’s life. Not only this, but how high quality services can make a very real difference to children and adults living with epilepsy.

Around 200 health care commissioners and providers heard from patients and leading clinicians about what a good service should look like, and how one can be achieved.

Professor John Duncan presented on the need for better adult services. Professor
Helen Cross talked about children’s services and Professor Ray Tallis showed the need for good services for older people with epilepsy.

The then Health minister responsible for epilepsy, Ann Keen MP, spoke at the event. She called for primary care trusts and strategic health authorities to “identify an epilepsy champion who can drive a local review of epilepsy services and put in place an implementation plan to commission world-class epilepsy services”.

Karen Deacon, Chair of the Joint Epilepsy Council, said: “I am delighted to see the
government endorsing the JEC view that spending on better primary care results in both better care and long term savings”.

We hope this event will kick-start primary care trusts to do more for people with
epilepsy, and will renew our message that services can, and need to, be better.

Consistency of supply

On March 30, the government’s consultation into introducing generic substitution
closed.

As you know, Epilepsy Action has been campaigning for all anti-epileptic drugs (AEDs) to be excluded from the government’s generic substitution proposals. This is because we believe brand switching for some people with epilepsy has caused breakthrough seizures, worsening of their seizure control or worsening of side-effects.

The Department of Health asked for comments on four different proposals. epilepsy Action supported Option 2, as we believe this was the best option to protect the best drug treatment for people with epilepsy. If introduced, this option would come with a list of drugs that could never be substituted, and we would make sure AEDs are on that list.

The consultation closed on March 30 and we are now awaiting the government’s
response, and their final proposals. We expect these to be published in the  summer.

Epilepsy Action would like to thank all its supporters who took the time to support this campaign. Particularly those who;

• Contacted the organisation to show support.
• Sent in their experiences of drug switching.
• Wrote to their politician to register their concern.
• Took part in our media work to raise awareness of the changes.
• Signed the e-petition and encouraged others to sign.
• Attended a consultation event.
• Sent comments to the consultation team.

We hope that the Department of Health acts on our concerns, and those of the wider epilepsy community, and makes sure there is a permanent exclusion for all anti-epileptic drugs.

However, the campaign may not be over. If the final proposal does not protect
treatment for people with epilepsy, we will do our best to change the scheme before it is introduced.

The latest information on this issue will be found on our website, ww.epilepsy.org.uk, but we will send you information on the government’s final proposals for England when they are announced.

Scotland, Wales and Northern Ireland

The Ministers of Health in Scotland, Wales and Northern Ireland have told Epilepsy Action that they plan to consult on introducing generic substitution. These consultations will consider the outcome of the consultation in England, and are expected later in 2010.

Epilepsy Action will again campaign for all anti-epileptic drugs to be excluded from any generic substitution proposals. We will make our members aware of any developments when they happen.

Generic substitution timeline

This has been a long campaign on a complicated issue. Below we have set out how we reached where we are today.

December 2008 – The UK government announces plans to introduce ‘generic
substitution’ as part of the 2009 Pharmaceutical Price Regulation Scheme.

February 2009 – The first parliamentary question on the introduction of generic
substitution, asked in the Northern Ireland Assembly by Mr Alex Easton MLA.

April 2009 – We carry out our anti-epileptic medication survey through the Epilepsy Today magazine, completed by nearly 1500 members. A summary of the results can be found here.

1 July 2009 – Epilepsy Action, with the Joint Epilepsy Council, launches an e-petition on the Downing Street website, petitioning for a full public consultation into any plans.

29 July 2009 – Epilepsy Action receives notification that the Department of Health will publicly consult on generic substitution proposals “in the autumn”.

August 2009 – Epilepsy Action’s Deputy Chief Executive Simon Wigglesworth sends the Department of Health a 35 page document, detailing why anti-epileptic drugs should not be generically substituted.

September 2009 – Epilepsy Action’s press office launches a media campaign to raise awareness of consistency of supply. Over 60 pieces of media coverage achieved, including coverage in The Times and The Daily Mail.

October 2009 – The e-Petition closes, having attracted 12,205 signatures. See the Prime Minister’s response by clicking here.

January 2010 – The Department of Health publishes “The proposals to implement 'generic substitution' in primary care, further to the Pharmaceutical Price Regulation Scheme (PPRS) 2009” consultation.

March 2010 – Consultation closes. Epilepsy Action’s response was based on the
information here: http://www.epilepsy.org.uk/campaigns/consistency-of-supply/epilepsy-action-response

Campaigns in 2010

All year we will be continuing campaigns for improved services and for consistency of supply. As well as these, Epilepsy Action will be carrying out various activities to raise awareness of epilepsy.

• 13-19 June is National Epilepsy Week. Last year’s National Epilepsy Week
  focussed on lobbying. This year we want to raise awareness of the issues facingyoung people with epilepsy. In particular, we want to reward nurseries, schools, colleges and universities that have worked to provide a good educational setting for people with epilepsy. We are launching our Epilepsy Action Edwards to recognise excellence in this area. For more information or to nominate a local education establishment for an Edward, contact Leanne Creighton at lcreighton@epilepsy.org.uk or call her on 0113 210 8800. The closing date for entries is 21 May.
• We will be campaigning for greater understanding of how epilepsy can affect people in older age, particularly of how epilepsy can develop in later life. This is part of Epilepsy Action’s 60th anniversary work.
• Epilepsy Action would like to see an improvement to the policies of ambulance trusts for carrying and administering emergency epilepsy medication. We will be campaigning for all paramedics to routinely carry, and be trained to administer, buccal midazolam and diazepam for people in status epilepticus.

You will hear more about these individual campaigns, and how you can get involved, in the future new-look newsletters.

Research into carers of people with long term neurological conditions.

King’s College London has been asked by the Department of Health to carry out a
study. They want to find out whether people who care for adults with long term
neurological conditions (such as epilepsy) can get the replacement or respite care services they need.

Replacement care is any type of service that takes over caring responsibilities from the main carer for either the short or longer term. Respite care is not just ‘taking a break’ from caring, but allowing a carer enough time to

• seek paid employment
• take up further education or training
• take part in voluntary work
• spending time with other people
• exercise or take part in other leisure activities.

You can ask to be sent more information about the survey, including how to take part, by going to https://www.kcl.ac.uk/schools/medicine/depts/palliative/arp/eval/carersform.
html

Dr David Williams is leading the study. You can contact him by calling 0207 848 5418 or emailing kclcarestudy@kcl.ac.uk

You can write to the study team for more information at:
Freepost RRLJ-JXEA-HYAS,
LTNC Care Study,
Palliative Care, Policy, and Rehabilitation,
Weston Education Centre,
Cutcombe Road,
London, SE5 9RJ

Case studies

As part of Epilepsy Action’s work to raise the profile of epilepsy, we keep a list of case studies - people with epilepsy willing to share their experiences. This helps us represent the whole range of people who are affected by epilepsy, in our awareness raising work.

We often ask our case studies to provide us with quotes on issues we believe are
important to people with epilepsy. It makes sure we truly represent the concerns of people with epilepsy.

Many case studies are also media volunteers, and help us by being either an epilepsy spokesperson or sharing their story with the media.

We are always looking to recruit more case studies, whatever your story or
experiences. At the moment we are looking particularly for people to help us with two campaigns that are coming up.

Were you diagnosed with epilepsy when you were over 60 years old?

If so, we would love to speak to you about our campaign, launching in November 2010.

Please contact Lucy Olafsson, PR and communications officer, for further information on 0113 210 8882. Alternatively, you can email lolafsson@epilepsy.org.uk

Are you a parent or guardian of a young person or teenager with epilepsy?

This year the theme for National Epilepsy Week is 'teenagers'. Epilepsy Action is busy planning a campaign to raise awareness of some of the issues faced by teenagers with epilepsy, and their parents or guardians. If you are a parent or guardian of a young person aged between 13 and 17, we would love to hear from you. We would like to hear your views, and find out if you would be happy for your child, or ward, to be involved in our campaign. For an initial chat, please contact Lucy Olafsson, PR and communications officer, on 0113 210 8882. Alternatively, you can email at lolafsson@epilepsy.org.uk

Even if you don’t fit either of these categories but would like to get involved as a case study, please get in touch with Lucy. We need your help to make sure the voice of people with epilepsy is heard.

Young, gifted and living with epilepsy? Epilepsy Action needs you

We have just launched what we hope will be the biggest ever survey of young people with epilepsy: our online Upfront survey.

The survey is designed for people with epilepsy between the ages of 12 and 20 years, and can be found at www.epilepsy.org.uk/teenagesurvey.

This survey will take just two-minutes to complete, and all people who enter will be entered into a free prize draw to win an iPod Touch.

The survey will help show us whether young people are receiving the right level of
information, care and support. The survey can be completed anonymously and if you choose to provide us with your details we won’t use those details without parental consent.

CQC Review

Epilepsy Action is calling for a ‘special review’ of long-term neurological conditions by the Care Quality Commission (CQC).

Each year the CQC conducts a certain number of special reviews. A special review would look at the health and social services for people with long-term neurological conditions, such as epilepsy, and would judge and score them in each part of the country. These results would then be available for the public to see.

We think a special review is very important, as it would show where services are poor and would provide recommendations to address their problems. Long-term neurological conditions are shortlisted for a review. But we are asking our
supporters to get behind us and ask the CQC to make sure this review goes ahead.

If you feel you could help us, you could send an email or a letter to the CQC.
The email address is assessmentconsult@cqc.org.uk

The postal address is;
Assessment Consultation
Care Quality Commission
103-105 Bunhill Row
FREEPOST Lon 15399
London
EC1B 1QW

This is a Freepost address and so does not require a stamp.

If you are unsure what to say in your email or letter, we have prepared a template letter which you can copy from. Download the template letter.

The CQC will start to discuss topics for special review after the closing date of April 27.

We hope by then they will already know how important a special review would be for people with long-term neurological conditions.

This issue’s ‘quick win’ - General Election candidates

Over the next couple of weeks, you may find that candidates from different political
parties knock at your door to canvass for votes. If you get the chance, you may be able to ask them what their party would do for people with epilepsy.

• What is your party doing for people with epilepsy?
• Why is epilepsy not higher up on your party’s health priorities?

Doing this may get potential new MPs thinking about epilepsy, raising awareness of the condition and asking themselves, “yeah, what are we doing for people with epilepsy?”.

If you would like to send any comments about this newsletter or require further
information about any of our campaigns please contact:

Pete Scott
Campaigns and Policy Officer
Epilepsy Action
Tel: +44 (0)113 210 8877
pscott@epilepsy.org.uk