Firstly please allow me to introduce myself. I’m Pete Scott and I am replacing Michaela as the new campaigns and policy officer at Epilepsy Action. My contact details are at the end of the newsletter,so please don’t hesitate to get in touch regarding campaigns or any queries you may have. 
Please keep me informed of anything that concerns you and in return I will keep you up-to-date with our latest campaigns.
I look forward to working with you all!
Pete Scott
Campaigns & Policy Officer
Epilepsy in England – time for change
As you will probably already know, in January Epilepsy Action launched the Epilepsy in England: time for change report at an event at the House of Commons.The launch was attended by MPs, Lords, health trusts, key organisations and people with epilepsy.
The report draws on the results of a survey of health trusts in England and a survey of people with epilepsy. As expected, the results revealed a concerning variation in the provision of epilepsy services, and serious variations in the collection of information.
The National Institute for Health and Clinical Excellence Guidelines (2004) recommend:
- “All individuals with epilepsy should have a regular structured review. This review should be carried out at... by a specialist.” Despite this, half (49 per cent) of acute trusts do not employ an epilepsy specialist.
- “All individuals with a recent onset suspected seizure should be seen urgently by a specialist (The Guideline Development Group considered that ‘urgently’ meant being seen within two weeks).” Despite this, most trusts (more than 90 per cent) have waiting lists of longer than this.
- “Individuals should have access to... epilepsy specialist nurses”. Despite this, well over half of acute trusts (60 per cent) and of PCTs (64 per cent) do not have one.
The report is, of course, only the beginning of our campaign. We now need your help to pressure the government and health trusts to make the necessary changes to improve services for people with epilepsy.
There are a number of ways in which you can do this:
- We are encouraging people to write to their local PCT or acute trust. You can make them aware of the report findings, and ask whether they will implement the recommendations.
- Also, you could write to your local MP to ask them to contact your local PCT or acute trust to ask about local services. Alternatively your MP could write to the Department of Health to ask the government to improve epilepsy services, and implement the recommendations in the report.
- If you haven’t already received a copy of the report and would like to do so, please contact me and I’ll be happy to send one out. Alternatively the full report and the individual data for each trust can be found on our website at
www.epilepsy.org.uk/timeforchange
National EpilepsyWeek 2009
As you will no doubt already know, National Epilepsy Week (NEW) this year is running between 17-23 May.
How you can get involved in National EpilepsyWeek 2009
Epilepsy Action is using this week to keep pressure on politicians to improve epilepsy services across the United Kingdom and needs your help.
We would like to bring home the reality of epilepsy to as many different Members of Parliament (MP), Assembly Members (AM), Members of the Scottish Parliament (MSP) and Members of the Legislative Assembly (MLA) as possible.
In order to achieve this, we are asking for volunteers to travel to their parliament or assembly and meet their local representative for a day of lobbying.
National EpilepsyWeek plays a pivotal role in Epilepsy Action’s campaigns. A strong presence at the lobbying events during the week will help us to start mounting pressure over the course of the year.
To help you get in touch with your local MP/AM/MSP/MLA, we have provided a template letter which you can adapt with your own details. Of course you do not have to use the template, but I hope you feel confident in telling your personal stories of the condition, and of the epilepsy services provided by your local
health trust.
To find your local MP, the website www.theyworkforyou.com/ is useful; you can enter your postcode in the search bar and you are provided with his or her details. Your local reference library will also be able to provide you with this information, or
alternatively give me a ring and I shall find out for you. If you are interested in taking part, please register your interest if you have not already done so. You can do this by contacting me through the contact details at the end of this newsletter or by visiting www.epilepsy.org.uk/nationalepilepsyweek
If you have any questions regarding the lobby, or would like me to provide more detail, then please contact me.
The main campaigns across the week are:In England: The parliamentary lobby organised by the Joint Epilepsy Council is taking place on the afternoon of Wednesday 20 May 2009 at the Jubilee Room at Westminster Hall. We are asking if you could arrange a specific time with your MP, between 2-4pm.We believe this will help more MPs become available if there is flexibility to the meeting time. |
| In Wales: The lobby of the National Assembly for Wales will take place in Room 21 ofTy Hywel (Crickhowell House), in the afternoon ofWednesday 20 May 2009. Ty Hywel is the Headquarters of the assembly and is located next to the Senedd.We are holding this event in conjunction with the All Wales Epilepsy Forum (AWEF). |
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In Northern Ireland: The lobby of Members of the Legislative Assembly (MLA) will be on Monday 18 May at the Long Gallery, the Parliament Building, Stormont.
This lobby will be slightly different to the English and Welsh events, in that it will be more of a formal meeting, (it will launch a campaign rather than continue previous work). It will include a short presentation, by a clinical specialist from |
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In Scotland: We don’t have a formal lobby of Holyrood organised; however this should not deter us from lobbying Members of the Scottish Parliament (MSPs).We are asking our supporters in Scotland to write or meet with their MSP, to discuss their local epilepsy services.
There will be a Joint Epilepsy Committee display stand in the Scottish Parliament on the 20 and 21 May with a photo opportunity for MSPs on the 21. |
Closer to the events we will try and provide you with any information which we have on the epilepsy services at your local trust. For the English trusts this will most likely be the data supplied for Time for Change. But obviously we want people to talk as much about their personal experiences as anything else.
We hope as many of you as possible will join us in campaigning during this week.We want to succeed in raising the profile of epilepsy, and the need for better treatment and services, and we need your help to do this.
Are you going out… or are you staying in?
If you are unable to take part in a parliamentary lobby during National Epilepsy Week (and even if you are), you may wish to take part in fundraising events to help our campaigns.
Following the success of ‘Out in the Open’ in previous years, we are continuing the event in 2009.
Last time out, the walks managed to raise £30,000 and included laps of a farmyard, a stroll around castle grounds and a trek to a mountain summit in Iceland.
New this year, we are encouraging people to hold Big Eat events.
Quite simply, invite your friends and family to enjoy a meal with you and charge a donation for Epilepsy Action. So if you like eating, and raising money, you could hold your own ‘Come Dine with Me’ Epilepsy Action special.
- Contact events@epilepsy.org.uk for more information.
Campaigns update
Wales plans to improve care
New plans to improve epilepsy services in Wales are underway following the launch of the Service Development and Commissioning Directives for Epilepsy by theWelsh Assembly Government, on 11 March.
The directive sets out the government’s expectations of local health boards.This includes requiring all health boards to review their epilepsy services and meet the guidelines set by the National Institute for Health and Clinical Excellence (NICE).
The plans have been formulated in partnership with the All Wales Epilepsy Forum, of which Epilepsy Action is a member. Epilepsy Action is pleased that the directive addresses many of what we consider the main issues concerning epilepsy care.
These include making sure all people with epilepsy have access to an individual care plan, and placing greater importance on the role of transitional care services.
The study recognises the lack of specialist neurology clinics. Planners of health and social care services in Wales will use the document to make necessary improvements in the management of epilepsy.
Most importantly, the directive sets out the quality of service local health boards should achieve.This includes more ambitious measures designed to reduce how many people develop epilepsy.
As the document is relatively new, our main focus at the moment is to find out who at each health board is responsible for timetabling and delivering the directive. But as I say, at the moment we are feeling very positive.
Copies of the directive are available from the Publications Centre of theWelsh Assembly Government or from me by email. Unfortunately we do not have paper copies of the directive to distribute.
Extra Sapphire Nurse funding in Wales
To support the launch of theWelsh directive, Epilepsy Action has committed £150,000 to fund three new Sapphire epilepsy specialist nurse posts in Wales.
In order to access this funding, Health Boards have to provide a business case.This should show why they should receive funding, and how an additional epilepsy specialist nurse would improve their epilepsy services.
Health providers have until December 2009 to apply for this funding. Successful health boards will have to commit to employing the nurses for a minimum of a further three years.
Epilepsy Action has already written to the Chief Executives of all welsh Health Boards to inform them of this offer, and will be doing so again. But if any welsh members of the supporters’ group feel strongly that their health board should apply for a apphire Nurse, I encourage you to write to them.
Early Day Motion 441: Epilepsy in England
As I write this, 142 of the 600+ MPs have signed the early day motion, currently tabled proposing improvements to epilepsy services. The total is still rising but there are still many Members of Parliament yet to sign and many that we have not convinced.
Consistency of supply
Later on in the year we are looking at putting together a campaign around the problems involved in the consistency of the supply of epilepsy drugs.
You may remember that in 2003, Epilepsy Action carried out research to find out about the experiences people had with different versions of anti-epileptic medication (AEDs). A total of 1,851 people responded to the survey. The results revealed that that a number of people have experienced difficulties in the management of their epilepsy when switching between different versions of AEDs.
At the moment we are in the process of gathering evidence that ‘consistency of supply’ is an issue. So if you or anyone that you know has experienced problems as a result of changing the brand of their AED, and feels they can share their experience with us, please get in touch.
All-Party Parliamentary Group on Epilepsy (APG)
The next meeting of the All-Party Parliamentary Group on Epilepsy (APG) will take place on Tuesday 19 May, at 4pm at Committee Room 2,The House of Lords.
Ann Keen MP, Parliamentary Under-Secretary for Health Services (and the Minister responsible for epilepsy services) is expected to attend.
If anyone is in contact with their local MP, you could encourage them to attend the event. It will be a great opportunity to quiz the Minister and urge the government to act to improve epilepsy care.Also, a large turn out will put extra weight behind our National Epilepsy Week campaigns.
If anyone needs further detail of the event then please get in touch.
Tellthemwhatyouthink.org
I have recently come across what appears to be a fairly new tool for tracking government consultations. Having only spent a little amount of time on there myself it looks as if the site is still developing. However it appears to be a useful tool for quickly finding any new epilepsy related consultations and initiatives. The address in full is www.tellthemwhatyouthink.org/ if you are interested in checking it out.
Top tip for campaigning
The most powerful ally you can have when campaigning for improved services is a supportive neurologist or paediatrician.They can provide important information about current services and help you obtain access to people in positions of power.Their knowledge and support can help you win the argument.
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
Fax: +44 (0)113 391 0300
pscott@epilepsy.org.uk
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