Take Action

If you’re not sure what to say to people when they ask how they can support you during a tonic-clonic seizure, Epilepsy Action has a handy acronym. You can let people know that following these simple steps can make all the difference to someone having a seizure.

A ssess
Assess the situation and remove any nearby objects that could cause injury.

C ushion
Cushion their head (with a jumper,for example) to protect them from head injury.

T ime
Check the time -if the jerking lasts for longer than five minutes, you should call an ambulance.

I dentity
Look for a medical bracelet or ID card-it may give you information about the person’s seizure and what to do.

O ver
Once the jerking has stopped, put them on their side. Stay with them and reassure them as they come around.

N ever
Never restrain the person, put something in their mouth or try to give them food or drink.

Epilepsy Action always advises that you call an ambulance if:
You know it’s a persons first seizure or the seizure lasts for more than five minutes or one seizure appears to follow another without the person gaining consciousness in between or the person is injured or you believe the person needs urgent medical attention.

On The Case

One thing many of us find difficult is the unpredictability of seizures.
Sometimes,they come with no warning and no trigger,and there is no way of no way to plan around them.
Preparing those close to you about what they can do when you have a seizure is a really good thing to do where possible. But you may not always be with someone you know or who knows you when you have a seizure.

Why not try out this handy trick?

If you have a clear case for your mobile phone, put a first aid card in it-it’ll be the first thing people see. You can get a card from: epilepsy.org.uk/firstaidcard
Soure Epilepsy Action

Love Logic a poem writen by Mr. N. Yule

Such becomes a need of fantasy reshaped to form a living desire and the apprehension felt to so derive.
Fulfilment means the operation of true love firm feelings, floated from one unto another to show our very best. Such dealings dealt in doing as shown presentation of their very wanting need.
Many thoughts of course are yet outstanding as developed in their prime, and being so much the make-up of what we call our time.
New dreams and great endeavours that form all current play, to list those demands, or yes those wishful aims, their successes in conclusion, that fulfil our loving ways.

This poem was written by Mr. N Yule founder of the Ipswich Epilepsy Support Group. If you like this poem this and many more can be found in the book entitled Ten of the Best A showcase of Poetry published by United Press.

Round of Applause

The Ipswich Epilepsy Support Group would like to thank The Ipswich Regent Theatre and The New Wolsey Theatre for thier help and kindness when two of our members had seizures. The Ipswich Regent put the person and their family in a box at no extra cost after the member had a seizure and the New Wolsey Theatre rearranged a show to another time of the week as one of our members could not make the show owing to a seizure lasting into the evening. This was offered by the member of staff automatically. Thank you again for being so understanding to our members.

Teva Oxcarbazepine tablets discontinued in the UK

Pharmaceutical company Teva is discontinuing its version of Oxcarbazepine tablets. It has already discontinued the 600mg and 300mg tablets, and will discontinue the 150mg tablets this year when current stocks run out. Other manufacturer’s versions of Oxcarbazepine tablets are still available. If people have any concerns about taking a different version of Oxcarbazepine, Epilepsy Action advises they speak to their GP epilepsy nurse or specialist.

Source epilepsy Action

Ipswich Epilepsy Support Group 2019 Quiz final total

The Ipswich Epilepsy Support Group would like to thank everyone who supported and helped with our yearly quiz and made it such a succussful evening, we raised £920.

We would also like to thank the following companies for there donations and the generosity of people who kindly gave us draw prizes for our grand draw on May 18th May 2019.

Coes Of Ipswich, Riverside Theatre Woodbridge, Ipswich Regent, Crown Pools,The New Wolsey Theatre, Sainsburys,The Froize and Riverhills Health Club and Boutique Spa and also The Norbridge Social club for letting us hold our yearly quiz at there venue.

Benefits for people with epilepsy

If you have epilepsy, or care for someone with epilepsy, you may be entitled to benefits.
What benefits you can claim and how much you get depends on your individual circumstances. To find out what benefits you and your family are entitled to, you could use an online benefits checker like Turn2us.

Access to Work If your epilepsy affects your ability to do your job or means you have to pay work-related costs, Access to Work grants can help pay for practical support.
Attendance Allowance A benefit to help with personal care if you have a disability and are 65 or over.
Blue Badge scheme Allows you to park close to your destination if you have severe mobility problems.
Carers Allowance If you look after someone with epilepsy who has substantial care needs, you may be entitled to Carer’s Allowance.
Disability Living Allowance (DLA) A benefit to help with the extra costs of looking after a child who has a disability or health condition. In Northern Ireland DLA can also be claimed by adults.
Disabled Facilities Grant If your epilepsy means you need to make changes to your home, you might be able to get a grant from your local council to help. Disabled Facilities Grants are not available in Scotland.
Disabled Persons Railcard You may be entitled to a Disabled Persons Railcard to get one third off rail fares in England, Scotland and Wales.
Employment and Support Allowance (ESA) A benefit for people who have an illness or disability that makes it difficult or impossible for them to work.
Free bus pass If you would be refused a driving licence because of your epilepsy, you may be entitled to free or reduced price bus travel.
Free prescriptions If you have epilepsy and take epilepsy medicines, you are entitled to free prescriptions in the UK.
Personal Independence Payment (PIP) A benefit to help with some of the extra costs of living with a long-term health condition or disability.
This is just a sample of the benefits that may be available to people with Epilepsy or there carers to get information about all benefits that are available to people please contact your nearest advice centre to make sure you are not missing out on any benefits you may be entitled to.
Source Epilepsy Action

The Ipswich Epilepsy Support group advises that you get professional help when looking into or completing all benefits forms or benefit checks. Like the C.A.B. or The Ipswich Disabled Advice Bureau where free advice is available. For details of The Ipswich Disabled Advice Bureau please go to our links tab or type in the Ipswich Disabled Advice Bureau or CAB into your browser to find out more information. Please note more organisations are available depend on the area that you live in.

New Prescription Cost for April 2019

Regulations have been laid before Parliament to increase certain National Health Service charges in England from 1 April 2019.

This year, therefore, the prescription charge has increased by 20 pence from £8.80 to £9 for each medicine or appliance dispensed. The cost of the prescription prepayment certificates (PPC) for 3-month PPC remains at £29.10 and the cost of the annual PPC will stay at £104.
Details of the revised charges for 2019 to 2020 can be found below.
Prescription charges
Single charge: £9
3-month PPC (no change): £29.10
12-month PPC (no change): £104

If you need continuous anticonvulsive therapy for your Epilepsy you are entitled to an exemption certificate To claim free prescriptions, ask your GP or hospital doctor for application form FP92A. This is the application form for a medical exemption certificate. Once you have filled in the form, the hospital doctor, GP or a member of staff at your GP surgery will sign to confirm that the information you have given is correct. They will then send for an exemption certificate for you
You should expect to receive your certificate within 10 working days of them receiving your application.

A medical exemption certificate:
entitles you to free NHS prescriptions only
doesn’t cover dental treatment or help with other health costs
should be shown when you collect a prescription
is valid for five years (or until your 60th birthday, whichever is sooner)

Replacing your certificate
If you lose or damage your certificate, you can be sent a replacement. You’ll receive your replacement certificate within 10 working days.

Renewing your certificate
You need to speak to your doctor to re-apply.
A reminder will be sent to you around one month before your current certificate expires but it’s your own responsibility to check that your certificate is still valid when you claim free prescriptions.
When your medical exemption certificate expires
It’s your responsibility to check the expiry date. If you claim free prescriptions after your certificate expires, you could have to pay a penalty charge of up to £100.

Cannabis Based Medicine

It was decided that from November 1st 2018 Cannabis based medicine would be able to be prescribed by UK specialist clinicians. before the law changed it was extremely difficult to get a prescription for Cannabis based medicine. It was a big step forward when in 2018 a review into cannabis based medicine was announced by the Home Secretary, Sajid Javid this then led to a change in the law allowing it to be prescribed. Unfortunately many people are still finding it hard to access this treatment. it was announced that it would only be available to those with exceptional clinical need’s and that only specialist clinicians would be able to prescribe this medication not GP’s. Another issue was that there was no licensed Cannabis based medicine products in the UK for epilepsy yet. All of these things already made it hard to access the medication. These clauses were put in place to make sure that only those people in critical need of the treatment got the medication. Evidence of effectiveness and safety of some Cannabis based medicines in epilepsy is still quite limited.

There is some good news for the effectiveness for one part of the Cannabis plant- Cannabidiol (CBD). This is the part of the plant which does not cause the effect of a high. A CBD medicine ,under the brand name Epidiolex is now approved for use in the US and a decision is expected for European Medicines Agency later this year. However the evidence for Epidiolex focuses on Dravet and Lennox-Gastaut syndromes in children. Evidence for its use for other conditions and in other age groups is limited.

The British Paediatric Neurology Association (BPNA) guidance has focused on Cannabis-based medicines in severe epilepsy in children. It is recommended that Cannabis-based medicines be used only as a last resort. All other available licensed medicines need to have been tried without success. The Ketogenic diet must have either been tried unsuccessfully or not be suitable. Epilepsy surgery must also not be suitable. If these conditions are met the BPNA only recommends prescribing Epidiolex. It does not recommend Cannabis oil or any other Cannabis-based medicine.

Later this year the National Institute for Health and Care Excellence (NICE) is expected to publish its own guidelines for specialist clinicians. Epilepsy Action is a registered stakeholder with NICE and is engaging with them around the guidelines through the formal consultation process. Once they are published, these guidelines will replace the guidance which is currently available.

There have also been concerns about current access to Epidiolex. This is the only Cannabis-based medicine recommended by the guidance, but the guidance is still very restrictive over its use and the fact that it is not licensed yet and the high costs associated with it are also creating a problem in terms of access. Later this year this medicine is expected to be licensed for prescription in the UK. When this happens accessing the medicine should be easier but its high cost could still be a barrier when trying to access this treatment. Steps have been taken towards makint this treatment more available in the UK but there is still more that needs to be done. With the expected Epidiolex licence and the new guidelines from NICE on the horizon the situation is likely to continue to change in the next year and organisations like Epilepsy Action are working hard to make this medication more accessible to people who need it.
Source Epilepsy Action.
For more information about this new treatment go to epilepsy.org.uk/epilepsytoday