It has been a number of months since the last CSG newsletter, and much has been going on in the world of Epilepsy Action. As one National Epilepsy
Week ends, we look forward to the next.We have also been prompted into action by the new policy towards automatic generic substitution of antiepileptic
drugs.
I’m always keen to hear of campaign plans or ideas, so please get in touch with me if you have any suggestions, or just want to talk through an idea you
have for a local campaign.
Pete Scott
Campaigns & Policy Officer
- National EpilepsyWeek 2010
- Early Day Motion 441: Epilepsy in England
- Consistency of supply
- A Private Member’s Bill for epilepsy
- Neurological Alliance update
- Top tip for campaigning
National Epilepsy Week
(17-23 May 2009)
National Epilepsy Week was a successful campaigning week for us, with the various events helping us to raise awareness of the poor state of epilepsy services across the UK.
On the Monday in Northern Ireland, more than 30 members of the legislative assembly (MLAs) attended an event at Stormont. There was great support from Epilepsy Action branches, with over 70 branch members or supporters attending. Many thanks also for the good show of support from the medical profession, with nurses and clinicians also turning out. People raised issues such as the lack of good services outside Belfast, specialist knowledge, and the poor understanding of epilepsy among general medical staff.We hear that to have welcomed seven MLAs would have been impressive so we were delighted that almost a third of all MLAs attended our event!
Our Welsh event took place at the National Assembly building in Cardiff on Wednesday. Around 150 people came to the event, including 30 assembly members (AMs), which is half of all AMs. There were so many people that we had to be given a second room. Many assembly members attended even without an arranged meeting with a constituent, to show their support for improved services.
The Westminster lobby, also onWednesday, went very well too, with at least 100 people coming along to meet with their MPs. Some had pre-arranged meetings and many went to Central Lobby and used the green card system to ask to see their MP. More than 20 MPs or their researchers met with constituents. A number of Epilepsy Action branches attended the lobby and some people travelled from as far as Hull and Scarborough to make their voices heard. MPs were very supportive and many agreed to take steps to raise the issue of poor epilepsy services on behalf of their constituents.
We did very well with media coverage of the week. In Northern Ireland, we were interviewed on three radio stations, including BBC Radio Ulster’s breakfast show, and achieved at least seven pieces of regional print coverage. In Wales, we were featured twice on television, three times on radio and in at least four local papers. In England, we secured one regional television news package, ten regional radio interviews and at least 30 newspaper articles, including the Daily Mirror.
We could not have done this without your help and support.We hope that from this, progress will be made in service provision and that people with epilepsy will start to receive the treatment they deserve.
National EpilepsyWeek 2010 – change of dates
The Joint Epilepsy Council of the UK and Ireland has decided to change the date of the next year’s National EpilepsyWeek. Instead of the usual May date, National Epilepsy Week 2010 will officially take place from Sunday 13 to Saturday 19 June. Please note that this change is for one year only! It is likely that the General Election will take place in May, effecting our fundraising ability and media coverage. The dates will revert to the third week in May from 2011 onwards.
We believe these revised dates will bring several advantages. Parliament will have ended for summer before the election and will not meet until the Queen's Speech. Epilepsy organisations can then take advantage of an extended quiet press period no longer dominated by parliamentary news. In addition, new MPs will be looking for opportunities to gain favourable coverage in their local press. This will make it easier to secure the support of these new MPs, and any existing MPs, before they are officially sworn in.
A new UK parliament must be elected by 3 June so all media activity at the end of May will be dominated by the elections. Members of Parliament (MPs) will be focussed on elections, rather than an epilepsy campaign so any political activity would be ineffective.
We appreciate that this may cause some concern but we are sure you will understand the reasons. Please note that we have moved Out in the OpenWalks and The Big Eat to coincide with 13-19 June. However, if you have already booked dates or a venue during May because this is the most convenient or traditional time, there is no need to worry! Just let us know so that we can send out your event pack earlier.
Early Day Motion 441: Epilepsy in England
The early day motion (EDM) closed in June at the recess of the UK parliament, with 189 signatures attached. The EDM recognised that the majority of primary care trusts and acute trusts in England are failing to meet the National Institute for Health and Clinical Excellence (NICE) Guidelines for epilepsy. It supported our Time for change report and called for all health commissioners to carry out a review of their epilepsy services.
Of the 189 MPs who supported the motion: 110 were Labour, 42 Liberal Democrat, 27 Conservative,5 Democratic Ulster Unionist, 3 Independent, 1 Respect and 1 Ulster Unionist.You can still see the names of the individual MPs at edmi.parliament.uk/EDMi/ Once on the page you will need to search for EDM 441.
Consistency of supply
As you may already be aware, from January 2010 pharmacists will be expected to change the brand of drug named on a prescription and replace it with a different generic brand. This is as part of the Department of Health’s 2009 Pharmaceutical Price Regulation Scheme agreement. This agreement will mean a pharmacist will be expected to replace more expensive branded versions of drugs for cheaper generic versions. They will not have to consult with either the patient or the doctor who wrote the prescription.
This is against the epilepsy guidelines from the National Institute for Health and Clinical Excellence (NICE). There is significant evidence from doctors and patients that somepeople with epilepsy have difficulties when changed between different versions of the same drug.
Epilepsy Action is concerned as we believe people with epilepsy should receive the same version of their AED unless their doctor prescribes otherwise for medical, not financial, reasons.
We are campaigning to make anti-epileptic drugs (AEDs) exempt from the rules of generic substitution. For further information on our ‘consistency of supply’ campaign, please contact me for a copy of our briefing note.
How to get involved
I have also prepared a template letter, which can be sent to MPs to raise awareness of this policy change.This includes a break down of our main concerns. For a copy of this, just get in touch (pscott@epilepsy.org.uk, 0113 210 8877).
e-Petition
To lobby the government against these changes, Epilepsy Action (and the Joint Epilepsy Council) tabled an e-petition on the Downing Street website, which closed on October 1. On closing, the petition had received 12,193 signatures, way beyond any number we thought we’d attract. A big thanks to everyone who has signed the e-Petition. I am pleased to let you know, in part as a result of the petition, that the government has told us that they will be launching a formal consultation on the subject ‘in the autumn’. This will give us, and other affected groups, an opportunity to formally register our concerns and put forward our representations.
Epilepsy Action will contribute, and we will let you know if there is an opportunity for individuals to do the same. Our response will include the results of our anti-epileptic medication survey. Keep an eye on both our website and in ‘Epilepsy Today’ for further information on both these documents.
A Private Member’s Bill for epilepsy
Epilepsy Action (and the Joint Epilepsy Council) is looking for friendly MPs to enter the parliamentary ballot and put forward an Epilepsy Private Member’s Bill.
Private Member’s Bills are potential new laws introduced by MPs who are not government ministers. In the past, laws to abolish the death penalty (1965) and to legalise abortion (1967) were both introduced as Private Member Bills.This Bill would make the Government responsible for setting out a strategy to improve epilepsy services.
Each year up to 20 Private Member’s Bills are proposed,although not all become law. The best chance for an MP to introduce a Private Member’s Bill is if they are drawn in the ballot, usually held at the end of November or beginning of December.
We believe MPs are more likely to support issues important in their constituency, and letters from constituents may carry more weight than a direct approach from Epilepsy Action. This means we are asking everybody we can to write to their local MP, asking them to give serious consideration to proposing an Epilepsy Private Member’s Bill.
I have included a draft letter which you can use, change, and send to your local MP to do this. I have also included a copy of the type of Bill we would like to see, which should be sent with the letter. All the MP has to do at this stage is to enter the ballot, and they should already know how this procedure works.
Because the competition to be drawn from the ballot is so fierce, we know we may not be successful this year.However to have any chance we need the support of MPs, and the more MPs that agree to enter the ballot for us, the greater chance we have of being drawn.
If you send a letter to your MP, and receive a reply, it would be great if you could send me an email or telephone me, just so we know if we have the support of any MPs.
Neurological Alliance update
Epilepsy Action is a founding member of the new Neurological Alliance Policy Group. The Neurological Alliance is a campaigning organisation, and a collective voice for over fifty brain and spine charities in England.
The policy group will carry out work around the new Neurological Alliance manifesto.The manifesto has two priorities: to achieve a strategy for delivering high quality neurological care and to commit the UK to leadership in neurological research.
- It can be viewed at www.neural.org.uk/campaigning/manifesto
I will keep you updated with any way in which you can campaign for the manifesto and the Neurological Alliance. Epilepsy Action on social networking Just a reminder that you can keep up with Epilepsy Action’s campaigns through our social networking sites. You can follow our Twitter feed at twitter.com/epilepsyaction
You can also become a fan of Epilepsy Action on Facebook, by searching for us by name. Our website,www.epilepsy.org.uk is updated daily and will also keep you up to date with all of the organisation’s work.
Top tip for campaigning
My top-tip for campaigning this time is quite a negative one. ‘Be prepared for setbacks’.
It is important to realise that even the best financed, supported and researched campaigns can grind to a halt if relevant parties refuse to listen to you. But it is important not to be put off by immediate set backs, and to accept that sometimes your campaign may end without achieving it’s goals. But be persistent, and don’t let that put you off going back to the drawing board and starting up the campaign again when circumstances change.
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
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