Author Archives: Darren

Spring Budget 2024

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.

Donations

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.

Entitled To Benefits ?

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 new treatment

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

Cost of Living Payments

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

Driving

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

Move Forward

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

Now and in the Future

Treating Epilepsy: Now and In the Future
Nov. 16, 2019
Here is what you need to know about epilepsy and the types of treatments that are available for it.

The Future of Treating Epilepsy
What is epilepsy?
Epilepsy is a disorder characterized by recurrent, unprovoked seizures. A seizure occurs when there is a surge of electricity in nerve cells in the brain that results in clinical symptoms. Those symptoms may include movements, jerking, unusual sensations or simply a loss of awareness. The terms epilepsy and seizure disorder mean the same thing. More than three million people in the United States have epilepsy. Studies show that in about half of people with epilepsy, medications do not completely control seizures. This is referred to as medication-resistant or refractory epilepsy.

What are the treatment options for epilepsy?
When someone has two unprovoked seizures, or a single seizure with a high risk of having another seizure, treatment with anti-seizure medications is usually started. There are many different anti-seizure medications that can be used as a first treatment. Anti-seizure medications differ by mechanism of action, potential drug interactions and side effect profile. There is not a single drug that is right for everyone. About half of the people treated with epilepsy will respond well to the first medication. A smaller percentage will have complete seizure control on the second medication. Once a person has failed to get complete seizure control on two different medications, the likelihood that additional medications will stop the seizures is usually less than 10%.

Do seizure medications have many side effects?
The most common side effects with anti-seizure medications are drowsiness, dizziness, nausea or unsteady gait. However, with adjustments in dosage and carefully matching the medications with patient characteristics, most patients tolerate anti-seizure medications quite well. There are other rare but dangerous side effects like liver or bone marrow damage, or severe rashes.

What is medication-resistant or refractory epilepsy?
If a patient fails to get complete control of seizures after trials of two appropriately chosen medications, it’s referred to as medication resistant or refractory epilepsy. In several studies, up to 50% of people with epilepsy did not get full control of seizures with medication. It’s been recommended that all patients with medication-resistant epilepsy should get advanced evaluation at an epilepsy center.

If the patient is already seeing a neurologist, why would they need to go to an epilepsy center?
The key element of an epilepsy center is usually an inpatient epilepsy monitoring unit, or EMU. In these units, patients are monitored continuously with video and EEG. Medications are often reduced to bring seizures on. That way a seizure can be studied second by second for behavior and EEG. This allows precise mapping of the part of the brain where seizures start as well as the patterns that seizures spread throughout the brain. Most importantly, for people with epilepsy, the EMU can determine whether their seizures are focal (start in a particular part of the brain and then spread), or generalized (start in the whole brain at once). Whether the seizures are focal or generalized determines which medications may work the best. Many people who come in to an EMU may have episodes that look like seizures, but do not have seizures or have epilepsy. Attacks that mimic seizures may be caused by heart problems, sleep problems or psychological problems. This is very important to determine because anti-seizure medications do not work in these non-epilepsy conditions, and can have unwanted side effects. In some people with epilepsy who have not responded to medication, surgical treatment can provide a very effective and safe option.

Who is a candidate for epilepsy surgery? What surgical options are available?
Traditional epilepsy surgery involves precise mapping of the area of the brain where seizures start, and then additional mapping to be sure that removing that portion of the brain would not adversely affect speech, memory, movement, sensation or other critical brain functions. Several different studies including brain imaging with advanced MRI, brain blood flow tracers, brain metabolic tracers and sometimes seizure recording and mapping with intracranial electrodes are needed. This type of advanced surgical planning is best accomplished by an experienced and comprehensive team at an epilepsy center. The team at the UC Gardner Neuroscience Institute Epilepsy Center has more than 30 years of experience in these advanced evaluations and surgical treatments. Our multidisciplinary team has over a dozen physicians with advanced training in epilepsy treatment. Over the last several decades, epilepsy surgery has become more effective and safer than ever before. In many cases, a patient who has little or no chance of ever becoming seizure free with additional trials of medication may have a 70% or better chance of becoming seizure-free with surgery. More recently, several different devices have become available for treatment of epilepsy when medications have been ineffective. These include vagus nerve stimulation, responsive neuro stimulation and deep brain stimulation.

What are the most important issues affecting people with epilepsy?
Surveys of people with epilepsy show that seizures can have a wide range of effects on their lives. Patients strive to feel normal because of the ever-present fear of having a seizure. Seizures are almost always unpredictable, so having seizures often limits the kinds of jobs people with epilepsy can have and often limits their ability to drive. Even activities like taking a bath or climbing up on a ladder can be dangerous. Many people with epilepsy find it difficult to hold a steady job and may miss days of work. Having epilepsy increases the risk of depression and anxiety. It is important for patients to report symptoms of depression and anxiety to their health care providers so that they can be treated appropriately.

What research is on the horizon to help people with epilepsy?
New anti-seizure medications are constantly being developed and tested. As we learn more about chemicals in the brain that control the behavior of nerve cells, medications that modulate these chemicals may be able to stabilize nerve cells and prevent seizures. Cannabidiol (CBD) is a component of marijuana that has been proven to reduce the frequency of seizures in many cases. The UC Gardner Neuroscience Institute was instrumental in many of the studies leading the FDA to approve cannabidiol as a seizure treatment. Our team at the UC Gardner Neuroscience Institute Epilepsy Center has been involved in more than 40 studies of new epilepsy treatments. Our team is evaluating and using new and better surgery methods. We are using precisely-focused, laser-induced heat to ablate a seizure focus, which may lead to fewer complications from epilepsy surgery. The success of stimulation devices in epilepsy is leading to more research in this area. Our team has been working for several decades on studies to determine which anti-seizure medications are safest in pregnancy, and how seizures change during and after pregnancy.

What about research to predict when seizures might happen?
Our team at the UC Gardner Neuroscience Institute has invested several years of research into seizure prediction. In a study using daily diaries from people with epilepsy, our team found that some patients may be able to predict when the risk of a seizure is higher. We are currently planning several large scale studies using diaries along with information provided from wearable devices to identify times of high seizure risk. If a person with epilepsy knew that the risk of seizures was high, they might be able to avoid risky activities, make sure they are not left alone or alter medication dosage with guidance from their healthcare provider.

Can someone die from seizures?
A rare but devastating effect of seizures can be sudden death. This is known as sudden unexpected death in epilepsy (SUDEP). It is estimated that about one in 1000 people with seizures that are not controlled with medication may die from SUDEP. The biggest risk factors are having generalized tonic-clonic seizures, having seizures at night and not being compliant with medication. A major area of research at the UC Gardner Neuroscience Institute Epilepsy Center is to identify and reduce the risk factors for SUDEP.

Epilepsy can affect people’s lives in many ways. At the UC Gardner Neuroscience Institute Epilepsy Center, we are constantly working to improve the lives of people with epilepsy. We provide expert and compassionate care, match treatments to an individual’s needs and are constantly striving to discover new, more effective treatments for epilepsy.

Source U C Health

Terminology

Epilepsy terminology
There are a number of common misconceptions surrounding epilepsy and epilepsy terminology.

Saying it right
Some terms used in association with the condition are becoming less appropriate, due to their negative connotations or inaccuracy. While seizures may be referred to as ‘epileptic’, this is not an appropriate term for a person with the condition. The correct term is ‘person with epilepsy’.

Seizure, fit, attack?
The word for an epileptic event is ‘seizure’. This most accurately describes the wide-ranging experiences of people with epilepsy. The words ‘attack’, ‘fit’ and ‘turn’ are still used, but decreasingly. The word ‘fit’, for example, implies a convulsive seizure but not all seizures will be convulsive.

In the interests of accuracy, the terms ‘grand mal’ and ‘petit mal’ should not be used to describe seizure types, as epilepsy is a very complex condition with many different seizure types. These terms have been replaced by a range of classifications which more accurately describe how different seizures manifest themselves.

There has been criticism that the word ‘brainstorming’ is offensive to people with epilepsy. Epilepsy Society recently conducted a small survey among people with the condition and the overwhelming response was that the term is not offensive when used in its correct context, defining a session amassing spontaneous ideas as potential solutions to a problem.

Epilepsy and associated disabilities
Epilepsy is not a disease or an illness and it is not catching. It is the most common serious neurological condition. There is no causal link between epilepsy and learning disabilities, however both are outward symptoms of underlying brain dysfunction or damage and sometimes their cause is the same. 30% of people with learning disabilities have epilepsy; 15% of people with epilepsy have learning disabilities.

Ancient misconceptions about epilepsy are still in evidence today. There is much stigma attached to having the condition. A study by Epilepsy Society showed that around 2% of people in the UK still believe epilepsy is caused by possession of evil spirits. The study also showed that over 75% of people would call an ambulance if they witnessed a seizure rather than apply some simple first aid.
Source The Epilepsy Society

Work Capability Assessment

Changes to tests for work capability – have your say
The Government has announced plans to introduce new welfare reforms which it says will help give people with disabilities and health conditions more opportunity to benefit from flexible working including working from home.

The reforms will look at the Work Capability Assessment (WCA), a test that looks at how much a disability or illness limits a person’s ability to work.

The Department for Works and Pensions say they want to update the WCA’s categories so that they better reflect the modern world of working which includes working from home and more flexible working patterns.

Earlier this year the Government announced £2 billion investment to support disabled people and people with health conditions into work.

By reviewing the WCA categories, the Government hopes to ensure people have the appropriate work opportunities and tailored support.

It is important that you submit your views to the Government about the welfare reforms and how they will affect you. You will find a two-page guidance document and a link to taking part in the consultation at the end of this article.

Nicola Swanborough, Head of External Affairs at the Epilepsy Society said: “The world of work has changed considerably since the pandemic, and is still evolving. This has opened up opportunities for many people to work from home which could benefit some people whose seizures mean they cannot drive.

“It could also mean more flexible working for those who experience anxiety alongside their epilepsy.

“However, it is critical that those carrying out the assessments have a full understanding of the complexities of epilepsy, its unpredictability and the challenges of a hidden disability.

“Epilepsy often goes hand in hand with anxiety and depression. Asleep seizures can leave people shattered in the morning and while one person may recover quickly from a seizure, others can take a week or more to feel well again.

“Someone with epilepsy may be able to run 10km on a good day, but following a seizure they may struggle to get to the toaster to make breakfast. Epilepsy doesn’t fit neatly into binary categories. It needs to be considered in its full context.

“If someone with epilepsy is returning to the workplace, it will be important for them to feel fully supported and for their employers to understand epilepsy and to make any necessary adjustments.”

The consultation will run until 30 October 2023 and the welfare reforms will come into force in 2025.

How to take part in the consultation

The Government wants to hear from people with disabilities as well as disability organisations. It will be holding a number of virtual events and face-to-face meetings. You can find all the details here: You can submit your views here. We have also prepared a two page guidance document to help you complete the consultation.
For more information about this please go to the Epilepsy Society web site.

Source The Epilepsy Society