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.
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.
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.
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.
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
Employers should not refuse a person with epilepsy a job because of their condition without having a very good reason. But jobs in the Armed Forces are not covered by the Equality Act 2010. This means you can be refused a job in the Armed Forces if you are diagnosed with epilepsy. There is more information about work and your rights on the Epilepsy Action website.
The Ipswich Epilepsy Support Group have free leaflets about people working with epilepsy if you would like one please phone our helpline on 01473461407.
Source Epilepsy Action.
The UK government announced last week that Pregabalin and Gabapentin will be reclassified as class C under the misuse of drugs act 1971. This change will take place in April 2019. Class C is the third in the goverment’s three tier system for categorising controlled substances with the least amount of harm compared with those in class A or B. These drugs are used to treat conditions like epilepsy, nerve pain and anxiety.
The Home Office has said these medicines will still be available for legitimate use on prescription by a doctor after the change in the law. These changes mean that doctors will now have to physically sign prescriptions rather than use electronic copies. The medicines will have to be dispensed within 28 days of the prescription being written. The changes mean it will be illegal to possess these medicines without a prescription. It will also be illegal to supply or sell them. This is an effort towards stronger controls accountability and a reduction in the potential for misuse of these medicines. The concerns of these drugs relate to misuse of the medication’s. This may include taking them if you don’t have a prescription or taking them in a way not prescribed by your epilepsy specialist.
The goverment’s decision to reclassify these medicine follows experts highlighting a rising number of deaths linked to their misuse. However according to researchers from the University of Bristol more than four in five deaths(80%) involved the misuse of these medicines alongside street drugs such as Heroin.
This is not the first medicine used for epilepsy to be classified as a class C drug. Midazolam and Diazepam used as emergency medicine for prolonged seizures have been listed as class C for around 30 years.
If you have any concerns about your medicines you can speak to your GP or epilepsy specialist. You can also call the Epilepsy Action helpline free on 08088005050.
source Epilepsy Action.
Our Quiz Night will be held On Saturday 18th May 2019 at the Norbridge Social Club
Norwich Rd Ipswich IP1 4HA. The quiz will start at 7pm and consists of 10 rounds of questions.
The Tickets cost £6 per person paid on the night and this includes a buffet.Up to 6 people per team. There is a prize draw and facilities include Disabled access and a licensed bar and a large carpark.
This map will help you find the venue.
To ensure a place and to avoid disappointment and for catering purposes if you would like to attend, please phone our helpline on 01473 461407.
Please support us so we can support you
Epilepsy Action is holding Purple day on Tuesday the 26th of March 2019.To sign up and receive a fundraising pack go to epilepsy.org.uk/purpleday or call 01132108851.
Just a quick reminder to people with Epilepsy when travelling any where if you are refused a driving licence because of your epilepsy you will be entitled to a disabled persons bus pass and a disabled rail card. These can help you get around without a car. For more information about applying for a rail card go to https://www.disabledpersons-railcard.co.uk/…/how-to-apply and to apply for a bus pass contact your local council or bus provider for more information. Please note fees will apply for the bus pass and rail card.
Epilepsy Action is holding its Reindeer Stampede on Sunday 2nd of December to help raise fund for Epilepsy Action. The stampede is a 5Km festive family fun run at Lister Park, Bradford. For more information go to epilepsy.org.uk/reindeer