The Epilepsy support group would like to thank everyone that donated, gave there time to make cakes and to everyone who supported us in anyway at our fundraising event at the Methodist Church Tea Room. The final total raised is £501. Once again thank you to everyone.

The Epilepsy support group would like to thank everyone that donated, gave there time to make cakes and to everyone who supported us in anyway at our fundraising event at the Methodist Church Tea Room. At the last count we have raised £485. Once again thank you to everyone.

The group are having a fund raising event at Orford Methodist Church Tea Room between 10.30 and 4pm.There will be a tombolo, tea,coffee and cake all support is greatfully appreciated.

Speaking on the 6th March the Chancellor Jeremy Hunt announced a £45 Million investment into research for Cancer, Dementia and Epilepsy.
The increased investment in Life Sciences was part of the Governments annual 2024 Spring Budget.
Jeremy Hunt said the money would help fund research into new medicines for these condition
Source Epilepsy Action.

The Ipswich Epilepsy Support Group is a registered charity and has no government funding any money the group secures is through fund raising so if you would like to donate any money to the group so we can continue to help people in the Suffolk area please donate via our Paypal account which is situated on our website.

People with Epilepsy could be entitled to some Benefits subject to your status and how your seizures effect you on a day day basis. Some Benefits available to people suffering with Epilepsy are Disability Living Allowance age limited is up to 16 years of age, Personal Independence Payment age limit is from the age of over 16 and up to 65 though certain rules may apply for claimants to continue claiming this benefit over the age of 65, Employment Support Allowance Support Group income based and contribution based, Employment Support Allowance Work Related Activity Group, Carers Allowance and certain other Universal Credit disability benefits linked to Universal Credit.

Please note the above Benefits may be eligible to other people with other medical conditions or disabilities.

There are a lot of Benefits available not linked to disabilities see below for a quick guide

Universal Credit, Tax Credit, Housing Benefit, Income Support, Jobseekers Allowance, Council Tax Reduction, Budgeting Loans and advances, Funeral Payments Cold Weather Payment. There are other benefits available to many to mention so for a full break down of these and all the other benefits available please contact your local Citizens Advice Bureau or another benefit related organisation ,DWP or phone the Ipswich Disabled Advice Bureau on 01473 217313. See are links tab for some organisations.
Source Ipswich Epilepsy Support Group.

NHS launches laser beam brain surgery to treat epilepsy
22 October 2022
Long term conditionsLong Term Plan
A world-leading, fibre optic laser therapy for people suffering with epilepsy who have not responded well to other forms of treatment will be rolled out on the NHS.

Offering hope to thousands of current and future NHS patients, the cutting-edge laser treatment, targets the part of the brain that is causing the seizures without the need for invasive surgery.

A nationwide first, the treatment will benefit up to 150 NHS patients every year with the first surgeries set to take place in early 2023.

The laser requires just a 1.5mm-wide probe into the skull with the fibre optic laser at the tip of the probe reaching and destroying the epilepsy-causing brain tissue from the inside by heating it.

Carried out in an MRI scanner, the clinical team accurately navigate through the brain avoiding blood vessels and other critical structures, and can monitor the temperature of the surrounding areas to ensure healthy brain tissue does not overheat.

The small wound heals quickly meaning patients can go home the next day with minimal risk of infection or other side effects and can return to their usual work and activities within a week.

This is the latest example of the NHS delivering on the Long Term Plan commitment to ensure patients across the country have access to the latest and most effective treatments available.

NHS national medical director Professor Sir Stephen Powis said: “This pioneering laser beam treatment for epilepsy patients is life-changing and will offer hope to hundreds of people every year who have not had success in preventing seizures with traditional drugs.

“By replacing invasive neurosurgery with a cutting-edge laser therapy, allowing clinicians to better target the parts of the brain causing the epilepsy, we not only dramatically reduce risks to these patients, but drastically reduce their recovery time both in and out of hospital.

“The treatment is yet another example of how the NHS continues to deliver on its NHS Long Term Plan commitment to secure the latest medical innovations for patients while also using our commercial means to ensure value for money”.

Currently one in three people with epilepsy are not able to control their seizures with drugs alone and may require invasive neurosurgery to remove the epilepsy-causing part of the brain.

Around one in 100 people suffer with epilepsy and there are around 600,000 people living with the condition across the UK.

While as many as 150,000 people may experience seizures of some kind, only around 10,000 are candidates for conventional surgery. This may be because the source of the seizure is not able to be localised or the seizures are not frequent or intense enough – and just one in 10 of these people are likely to go ahead with neurosurgery.

Current conventional neurosurgery – an invasive operation on the skull and brain, removing the part that is causing the seizures – is only considered in patients who have had limited success with other treatments. It requires a week’s stay in hospital, followed by three months of recovery at home, which carries risks of infection and pain.

NHS medical director for specialised services Professor James Palmer said: “This innovative laser therapy is a game-changing breakthrough for patients who have not had success with traditional forms of treatment to control their seizures and will give those with epilepsy a real chance to live a normal life.

“The NHS is committed to rolling out cutting-edge treatments as quickly as possible – it is just one of seven new innovations that the NHS is making available to patients from today across the country following the latest review of treatments and technologies that should be prioritised for investment.”

LITT will initially be available at two specialist service providers in England with the first surgeries beginning in early 2023.

Individuals eligible for this treatment will have focal epilepsy that has not been controlled with two or more appropriate anti-seizure medications at maximum tolerated doses and have been investigated at an Epilepsy Surgery Centre.

They will also have their suitability assessed by a multi-disciplinary team and have a form of epilepsy that would make open neurosurgery highly risky.

This new treatment is one of seven recommendations made by the Clinical Priorities Advisory Group (CPAG) that NHS England has accepted because the treatments are effective and represent an improvement in the service offered to patients.

Date published: 22 October, 2022
Date last updated: 21 October, 2022
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Source NHS website

A petition to reinstate the Disability Cost of Living Payment has reached more than 40,000 signatures.

Hosted on the website Change.org, the petition began on 15 December 2023. Today (January 15), it has reached 46,813 signatures.

In November 2023 it was reported that the government had dropped the payments for those receiving certain disability benefits, including personal independence payments (PIP). A £150 cost-of-living payment had previously been given between 20 June 2023 and 4 July 2023 but was not paid out to disabled people in October, despite remaining for people on low incomes.

Many people with epilepsy qualified for the original cost-of-living payments because they were also receiving PIP.

The petition was set up by Thomas Howard who was inspired by hearing other disabled people talk about how they were being affected by the cost-of-living crisis.

Thomas said: “The cost-of-living crisis was always at the forefront of a lot of issues people were talking to me about. They were especially talking about the rising cost of energy bills and the impact that was having on their day-to-day lives.

“I have autism myself, so it was something I was quite passionate about. I discovered the government had been doing cost-of-living payments, but there was no plan to continue it. I thought: ‘Well, energy bills have just gone up by 5% this January, surely they should be continuing to help those most vulnerable in our society.’

“I thought, ‘Well, the government isn’t taking this seriously. Perhaps a petition is the best way to get their attention and to raise the issue and put it in the spotlight so they have no choice but to at least look into it.”

When Thomas set up the petition, his goal was to reach 5,000 signatures, but he soon had to reassess his target.

He said: “It just spiralled. A couple of people shared it and then it was a knock-on effect, more and more people started sharing it. It went from 4,000 to 10,000. The original plan was to send it to government when it hit 5,000 signatures but now I’m aiming for something a lot higher. I at least want it to get to 50,000.”

At the end of January, Thomas is planning to send the petition to chancellor of the exchequer Jeremy Hunt.

He said: “The aim is to say: ‘Look, there’s this many people you can’t ignore this issue any more.’”

Thomas said he was concerned about the lack of disabled representation in parliament and that because he had a platform on social media he felt a responsibility to speak out.

“Less than 2% of MPs in parliament identify as disabled,” he said. “So I feel like the voices and opinions of those with disabilities are overshadowed and forgotten by politicians. If I have a platform I should use it help other people.”

Writing on the Change.org site, Thomas said: “The reinstatement of this payment is not just about money; it’s about dignity, independence and survival for thousands across our nation. The payment, although far too small, acted as an essential lifeline that helped to cover basic needs such as food, heating and transportation.”

Epilepsy Action has advice to help people struggling with the cost of living.
Source Epilepsy Action

Epilepsy and driving
You must tell DVLA if you’ve had any epileptic seizures or blackouts.

You must stop driving straight away.

You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result.

Car or motorbike licence
Report your condition online

You can also fill in form FEP1 and send it to DVLA. The address is on the form.

Your licence may be taken away. When you can reapply for it depends on the type of seizure you had.

You’ve had epileptic seizures while awake and lost consciousness
Your licence will be taken away. You can reapply if you haven’t had a seizure for at least a year.

If you had a seizure because your doctor changed or reduced your anti-epilepsy medicine, you can reapply when:

the seizure was more than 6 months ago

you’ve been back on your previous medication for 6 months

you haven’t had another seizure in that time

You’ve had your first-ever seizure while awake and lost consciousness
Your licence will be taken away. You can reapply when both the following are true:

you haven’t had a seizure for 6 months

DVLA’s medical advisers decide there isn’t a high risk you’ll have another seizure

Medical advisers will base their decision on information you and your doctors send them. If they need to carry out an investigation they’ll let you know.

Otherwise you can reapply after a year.

You’ve had seizures while asleep and awake
You may still qualify for a licence if the only seizures you’ve had in the past 3 years have been while you were asleep. DVLA will let you know whether or not you qualify after you’ve filled in the form. Until you hear from them you must stop driving.

You’ve only had seizures while asleep
You may still qualify for a licence if it’s been 12 months or more since your first seizure. DVLA will let you know whether or not you qualify after you’ve filled in the form. Until you hear from them you must stop driving.

You’ve had seizures that don’t affect your consciousness
You may still qualify for a licence if the only type of seizure you’ve ever had is one where:

you were fully conscious and aware of what was happening around you
you were able to move and did not lose control of your movements
Your first seizure must have been 12 months ago or more.

DVLA will let you know whether or not you qualify after you’ve filled in the form. Until you hear from them you must stop driving.

Bus, coach or lorry licence
Fill in form FEP1V and send it to DVLA. The address is on the form.

How long you will lose your licence for depends on what type of seizure you have.

You’ve had more than one seizure
Before you reapply for your licence, you must show you haven’t:

had an epileptic seizure for 10 years

taken any anti-epileptic medication for 10 years

got a 2% or higher risk of another seizure, according to DVLA’s medical advisers

You must also have a car and motorbike licence.

You’ve had a one-off seizure
Before you reapply for your licence, you must show:

you haven’t had an epileptic seizure for 5 years

you haven’t taken any anti-epileptic medication for 5 years

You must also have:

a car and motorbike licence

been assessed in the past 12 months by a neurologist

results from medical investigations for epilepsy that are satisfactory to DVLA’s medical advisers

Medical advisers will base their decision on information you and your doctors send them. If they need to carry out an investigation they’ll let you know.
Source Gov.UK

Two new anti-seizure medicines with novel mechanisms move forward

Two new anti-seizure drugs have moved forward in the testing and approval process. Potiva, known generically as ezogabine or retigabine was recommended for approval by an FDA advisory panel, although with cautions to monitor for bladder retention as a side effect. Retigabine acts on a potassium channel in brain cells. Excitability of brain cells is controlled by ion channels, which are proteins that act as passageways for sodium, potassium, calcium and chloride ions into and out of the cells. Existing anti-seizure drugs work on sodium, calcium and chloride channels. Retigabine is the first clinically available drug to affect potassium channels. Potiva, sponsored jointly by Valeant and Glaxo Pharmaceuticals, will presumably be available soon after FDA final approval.

A second drug, called perampanel, works by blocking the excitatory neurotransmitter glutamate at the so-called AMPA receptor site. No currently available anti-seizure drug uses this mechanism. The drug’s sponsor, Eisai, reported favorable results from a mainly European and Asian trial in 706 patients who received 2, 4 or 8 mg of perampanel. Seizures were reduced when the drug was added to existing drug regimens. Side effects typically included dizziness, sleepiness or headache, but the medication usually was well-tolerated. The sponsor plans to submit the drug for FDA approval.
Source Epilepsy Foundation