There isn’t just one reason to hold an event for Purple Day, there are 600,000! That’s the number of people living with epilepsy in the UK right now.
When: Tuesday 26 March 2013 Where: Nationwide
About Purple Day
Purple Day is the international day for epilepsy awareness. To celebrate this year, Epilepsy Action will quite literally be turning purple – and we want you to join us! You can do anything – just make sure its PURPLE!
Organising a Purple Day event really is simple! Whether you paint yourself purple, organise a purple bake off or host a purple tea party you can hold your Purple Day event anywhere and invite anybody along to share in the fun.
Last year Epilepsy Action had Purple Day events all over the UK; from London to West Glamorgan, in schools, homes and workplaces.
This series of half day events across England and in Wales will give information to people with epilepsy. They will be about the options for treatment beyond medication in difficult to control epilepsy.
People attending will have the opportunity
To gain knowledge on epilepsy and medication to control seizures
To be aware of treatment options beyond medication
To be aware of surgery as a treatment for people with epilepsy
To gain knowledge on the social aspects of living with epilepsy and the support available from Epilepsy Action
Cyberonics, manufacturers of the vagus nerve stimulation system (VNS) have generously sponsored these events.
The sessions will cover
Epilepsy and medication to control seizures
Surgery for epilepsy
Vagusnerve stimulation (VNS)
Ketogenic diet as a treatment for children with epilepsy
Personal experience of using VNS
Information about epilepsy and the work of Epilepsy Action will also be included
Each event will have presentations from medical staff and Epilepsy Action staff. Volunteers will be present providing information for people to take away with them.
Bristol HealthPartners are keen to hear from the citizens of Bristol on what they think the biggest health challenges are for the city. Please could you forward this message/information to members of your patient groups.
In partnership with TEDMED, Bristol Health Partners are running a TEDMEDLIVE conference in Bristol on April 18th and 19th and want to canvass your views. One of the sessions at the event will be chosen by the people of Bristol, (in association with The Bristol Post) on what you think are the biggest health challenges for the city.
Please see the links below for more background information, read what the press say and how to register for the event:
Today Epilepsy Action has launched its new report, A Critical Time for epilepsy in England. The report shows that epilepsy health services in England are not good enough and vary in many areas. It also shows that many of the new organisations responsible for NHS services are not considering epilepsy in their plans for the future.
Epilepsy Action’s Vice President, Laura Sandys MP, will later formally launch the report at a reception in the House of Commons. Members of Parliament, Members of the House of Lords, key organisations and people with epilepsy will all be in attendance to hear the findings of the report, and Epilepsy Action’s recommendations to improve services.
Last year we conducted four surveys around health services for people with epilepsy in England. We believe this makes up the most comprehensive study of epilepsy services ever carried out in the UK. These surveys were of:
People with epilepsy.
Acute trusts (hospitals and Foundation trusts that provide services).
Primary care trusts, primary care trust clusters and newly forming clinical commissioning groups (who provide and buy health services for people).
Local authorities, who will soon have a role in deciding local health priorities.
The results from these surveys showed that the services provided at the moment are not good enough.
We found that the services currently being provided are not meeting the needs of people with epilepsy. These results mirror similar findings uncovered by Epilepsy Action’s 2009 report, Epilepsy in England: time for change. Just as then, we have found that access to specialists can depend upon where you live. In some places the basic elements of an epilepsy service, such as an epilepsy specialist nurse, are missing.
We also found that not enough is being done to plan for better services once changes to the NHS, planned for April, have taken place. Although we surveyed the organisations during the big NHS changes, it was clear that epilepsy was not featuring in plans as it should have been. This leaves us concerned that there are no plans to address these gaps over the next few years.
Our report carries 10 recommendations that we believe, if carried out, would significantly improve epilepsy services. They include:
Each clinical commissioning group agreeing to carry out an assessment of the needs of their patients with epilepsy.
All clinicians to make sure their patients with epilepsy have been offered a care plan, and to help them create one if they haven’t.
Members of Parliament to follow up this report with their local health trusts to see that they make plans to address the problems we’ve identified.
The Health Select Committee in Parliament to conduct a first ever inquiry into epilepsy services. This would hopefully lead to an action plan to address any problems that the Committee identifies.
This report is aimed at clinicians, health service commissioners and elected officials. However anyone can download a copy. (<< click on this link to download the PDF document of the report)
If you are a clinician or a commissioner, or you are campaigning with us, you can get a free hard copy of this report. To do this, please get in touch with us using the details at the bottom of this page.
Campaign with us
Epilepsy Action is making sure that all MPs, Peers, hospital trusts, clinical commissioning groups and local authorities get a copy of the report. We will be including any relevant results we have for their local area.
However we do not want the report to gather dust on a shelf, without any changes coming as a result. So we are asking our supporters to write to their new CCG and their local authority (council) to ask what actions they will be taking now that they have seen our report.
If you do write to your local CCG or council, tell us how you get on. This will help us to form a picture of how services are developing around England.
If you would like more information about the research or how you can campaign with us, please contact the Campaigns team by either emailing firstname.lastname@example.org or calling Epilepsy Action on: 0113 210 8800.
If you work for a NHS health trust, a PCT, a Commissioning Group or local council, and believe we have incorrectly or inaccurately recorded you work we would be happy to receive new information and will update our records accordingly. Please get in touch with the Campaigns team by emailing email@example.com or calling 0113 210 8800.
Brain on Fire: ‘Blood and foam began to spurt out of my mouth’
She was 24 when she began to suffer terrifying seizures. In this extract from her new book, she describes the first such incident
After a series of uncharacteristic outbursts, episodes of pins and needles, nausea and migraines and incidents of irrational behaviour, Susannah suffers a seizure while sleeping…
As Stephen later described the nightmarish scene, I had woken him up with a strange series of low moans, resonating among the sounds from the TV. At first, he thought I was grinding my teeth, but when the grinding noises became a high-pitched squeak, like sandpaper rubbed against metal, and then turned into deep, Sling Blade–like grunts, he knew something was wrong. He thought maybe I was having trouble sleeping, but when he turned over to face me, I was sitting upright, my eyes wide open, dilated pupils but unseeing.
“Hey, what’s wrong?”
When he suggested I try to relax, I turned to face him, staring past him like I was possessed. My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened. I was gasping for air. My body continued to stiffen as I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth. Terrified, Stephen stifled a panicked cry and for a second he stared, frozen, at my shaking body.
Finally, he jumped into action; though he’d never seen a seizure before, he knew what to do. He laid me down, moving my head to the side so that I wouldn’t choke, and raced for his phone to dial 911.
I would never regain any memories of this seizure or the ones to come. This moment, my first serious blackout, marked the line between sanity and insanity. Though I would have moments of lucidity over the coming weeks, I would never again be the same person. This was the start of the dark period of my illness, as I began an existence in purgatory between the real world and a cloudy, fictitious realm made up of hallucinations and paranoia.
From this point on, I’d increasingly be forced to rely on outside sources to piece together this “lost time”.
As I later learned, this seizure was merely the most dramatic and recognisable of a series of seizures I’d been experiencing for days already. Everything that had been happening to me in recent weeks was part of a larger, fiercer battle taking place at the most basic level inside my brain.
The healthy brain is a symphony of 100 billion neurons, the actions of each individual brain cell harmonising into a whole that enables thoughts, movements, memories or even just a sneeze. But it takes only one dissonant instrument to mar the cohesion of a symphony. When neurons begin to play nonstop, out of tune and all at once, because of disease, trauma, tumour, lack of sleep, or even alcohol withdrawal, the cacophonous result can be a seizure.
For some people, the result is a “tonic-clonic” seizure like the one Stephen witnessed, characterised by loss of consciousness or muscle rigidity and a strange, often synchronised dance of involuntary movements – my terrifying zombie moves. Others may have more subtle seizures, which are characterised by staring episodes, foggy consciousness or repetitive mouth or body movements. The long-term ramifications of untreated seizures can include cognitive defects and even death.
The type and severity of a seizure depend on where the neural dysfunction is focused in the brain: if it is in the visual cortex, the person experiences optical distortions, such as visual hallucinations; if it is in the motor areas of the frontal cortex, the person exhibits strange, zombie-like movements and so forth.
Along with the violent tonic-clonic seizure, it turned out I had also been experiencing complex partial seizures because of over-stimulation in my temporal lobes, generally considered to be the most “ticklish” part of the brain. The temporal lobe houses the ancient structures of the hippocampus and the amygdala, the parts of the brain responsible for emotion and memory. The symptoms from this type of seizure can range from a “Christmas morning” feeling of euphoria to sexual arousal to religious experiences. Often, people report feeling deja vu and its opposite, something called jamais vu, when everything seems unfamiliar, such as a feeling of alienation I’d in the office bathroom; seeing halos of light or viewing the world as if it is bizarrely out of proportion (known as the Alice in Wonderland effect), which I experienced prior to a disastrous interview with America’s Most Wanted host John Walsh; and experiencing photophobia, an extreme sensitivity to light, such as visions I had in Times Square. These are all common symptoms or precedents of temporal lobe seizures.
A small subset of those with temporal lobe epilepsy – about 5% to 6% – report an out-of-body experience, a feeling described as being removed from your body and able to look at yourself, usually from above.
There I am on a gurney.
There I am being loaded into the ambulance as Stephen holds my hands.
There I am entering a hospital.
Here I am. Floating above the scene, looking down. I am calm.
There is no fear.
When I regained consciousness, the first thing I saw was a homeless man vomiting just a few feet away in a brightly lit hospital room. In one corner, another man, bloodied, beaten, and handcuffed to the bed, was flanked by two police officers.
Am I dead? Anger at my surroundings welled up inside me. How dare they put me here. I was too incensed to be terrified, and so I lashed out. I hadn’t felt like myself for weeks, but the real damage to my personality was only now bubbling to the surface. Looking back at this time, I see that I’d begun to surrender to the disease, allowing all the aspects of my personality that I value – patience, kindness and courteousness – to evaporate. I was a slave to the machinations of my aberrant brain. We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it. I am not dead yet. I convinced myself that a technician who may have flirted with me when I had my MRI scan was clearly behind all this. I am dying because of him, because of that lab technician.
“Get me out of this room now,” I commanded. Stephen held my hand, looking frightened by the imperiousness in my voice.
“I will not stay in this room.”
I will not die here. I will not die with these freaks.
A doctor approached my bedside. “Yes, we will move you right away.” I was triumphant, delighted by my newfound power. People listen when I speak. Instead of worrying that my life was out of control, I began to focus on anything that made me feel strong.
A nurse and a male assistant wheeled my bed out of the room and into a nearby private one. As the bed moved, I clutched Stephen’s hand. I felt so sorry for him. He didn’t know I was dying.
“I don’t want you to get upset,” I said softly. “But I’m dying of melanoma.”
Stephen looked spent. “Stop it, Susannah. Don’t say that. You don’t know what’s wrong.” I noticed tears welling up in his eyes. He can’t handle it. Suddenly the outrage returned.
“I do know what’s wrong!” I yelled. “I’m going to sue him! I’m going to take him for all he’s worth. He thinks he can hit on me and just let me die? He can’t just do that. No, I’m going to destroy him in court!”
Stephen withdrew his hand swiftly, as if he’d been burned. “Susannah, please stay calm. I don’t know what you’re talking about.”
“The MRI guy! He hit on me! He didn’t catch the melanoma. I’m suing!”
The young resident interrupted me mid-rant. “This is something you might want to look into when you get home. If you need a good dermatologist, I would be happy to recommend one. Unfortunately, there’s nothing more we can do here.” The hospital had already conducted a CT scan, a basic neurological exam, and a blood test. “We have to discharge you and advise that you see a neurologist first thing tomorrow.”
“Discharged?” Stephen interjected. “You’re letting her go? But you don’t know what’s wrong and it could happen again. How can you just let her go?”
“I’m sorry, but seizures are fairly common. Sometimes, they just happen and never happen again. But this is an emergency room and we can’t just keep her to see. I’m sorry. My advice is to see a neurologist first thing tomorrow morning.”
“I’m still suing that guy!”
The doctor nodded patiently and departed to address the gunshot wounds and drug overdoses that awaited him.
“I have to call your mom,” Stephen said.
“You don’t have to do that,” I insisted, my voice mellowing as I returned, almost instantly, to my old self. Manic episodes can fade away as quickly as they arise. “I don’t want her to worry.”
Mom was a worrier by nature and I had tried to spare her the full story of what was happening to me so far.
“I have to,” he insisted and coaxed her home number out of me. He stepped into the hallway and waited two interminably long rings before Allen, my stepfather, picked up the phone.
“Hello,” he said groggily in his thick Bronx accent.
“Allen, it’s Stephen. I’m at the hospital. Susannah had a seizure, but she’s doing fine.”
In the background, my mom shouted: “Allen, what is it?”
“She’s going to be OK. They’re discharging her,” Stephen continued.
Despite my mom’s rising panic, Allen maintained his composure, telling Stephen to go back home and sleep. They would come in the morning. When he hung up the phone, my mom and Allen looked at each other. It was Friday the 13th. My mom felt the foreboding and she began to cry uncontrollably, certain that something was seriously wrong. It was the first and last time she would allow herself to succumb completely to her emotions in the frightening months that followed.
EXTRACT 2: Susannah Cahalan’s recollections of her illness were far from reliable, so in order to write Brain on Fire she had to draw on the memories of friends and colleagues, and other material, such as hospital CCTV footage and a journal she kept during her hospital stay. Watching and reading back this material was an unsettling experience for her.
I insert a silver DVD marked “Cahalan, Susannah” into my DVD player. The video begins. I see myself at the centre of the screen, peering into the camera’s lens. The hospital gown slips off my left shoulder and my hair is stringy and dirty.
“Please,” I mouth.
On the screen, I stare straight ahead, lying on my back as rigid as a statue, my eyes the only feature betraying the manic fear inside. Then those eyes turn and concentrate on the camera, on me now.
Fear of this sort is not something we typically capture in photographs or videos of ourselves. But there I am, staring into the camera as if I’m looking death in the face. I have never seen myself so unhinged and unguarded before and it frightens me. The raw panic makes me uncomfortable, but the thing that truly unsettles me is the realisation that emotions I once felt so profoundly, so viscerally, have now completely vanished. That petrified person is as foreign to me as a stranger and it’s impossible for me to imagine what it must have been like to be her. Without this electronic evidence, I could never have imagined myself capable of such madness and misery.
The video self hides her face under the covers, clutching the blanket so hard her knuckles turn white.
“Please,” I see myself plead on video again. Maybe I can help her.
During my third hospital stay my true moment of awakening occurred; I began keeping a diary, started reading again, and first expressed the desire to understand what had happened to me. Perhaps because the diary provides physical evidence of my budding self (I can literally read the thoughts of that wounded Susannah), I can in essence begin to remember what it was like to be her, unlike the earlier Susannah from my paranoid diary entries before the hospital, who was more like a figment of a shadowy memory, so distant that she might have been a character in a horror movie. Yet the person I read about in my recovery diary is childlike and prosaic, unlike that umbral pre-hospital self who could, even at her most obscured, be eerily illuminating. Yet, there are surprising similarities between this diary and the journals I kept during junior high school. In each, there’s a stunning lack of insight and curiosity about myself. In place of deep thought, there are dozens of passages dedicated to my body (weight gain in the recovery piece and lack of breasts in the junior high journal) and silly, petty issues of the day (hating hospital food versus fighting with frenemies). I sympathise with this vulnerable, budding Susannah, as I do that pre-teen version of myself, but she is still not entirely me, as I am now.
Extracted from Brain on Fire: My Month of Madness by Susannah Cahalan, published by Particular Books, £16.99.
Now that the transfer from DLA to PIP is pretty much a done deal, with a few more tweaks likely – but otherwise leaving up to half a million of us with Epilepsy and other Disability’s out in the cold with a loss of vital benefits.
It’s not rocket science to see that many of those who will lose out are going to have to make stark choices about food or heating, not buying essential equipment or important extras not available on prescription, or having to forgo the motability car they were saving for. But there are other, unforeseen, side effects of this hateful, unwanted legislation.
People who are removed from DLA and fail to make the transfer to PIP because they won’t clock up enough points on the tick-box assessment won’t just lose the money – they will also lose their eligibility for passport benefits.
Passport benefits are extra benefits you can only access if you are already receiving DLA. The most well known ones are the Disabled Rail Card and the Concessionary Disabled Bus Pass issued by local authorities (LA).
It’s going to be a massive huge blow to wheelchair users who use accessible buses and trains, as well as those with limited mobility on foot who need access to public transport.
And – People with Epilepsy will also lose out heavily because they are the main group among disabled people who are not medically fit to drive. Many people with far more disabling conditions can still drive themselves in adapted vehicles and can go pretty much anywhere they please. People with uncontrolled epilepsy are completely dependent on public transport and taxis.
Looking at the PIP points allocation, I’m fairly sure I won’t qualify for PIP even though I have a lifetime award for DLA. I get DLA because preparing and cooking a meal unaided is very risky for me, likewise going out unsupervised ‘sometimes’ is also risky because of the possibility of having a seizure while crossing the road, for example. These are the risks to health and safety we need to consider everyday, as people with Epilepsy and other neurological conditions.
These are just some of the conditions why we qualify for travel concessions.
However, concessionary bus passes in England and Wales are issued by local authorities and it’s quite literally a postcode lottery, as LAs can set their own criteria for eligibility. Most require proof that applicants receive DLA, such as a copy of the award letter.
For disabled people living in those local authority areas, the loss of the bus pass will be a bitter blow. It will certainly severely limit my ability to get around as much as I’d like to, yes – even to work!
And by this… Disabled people will suffer severe isolation at home.
Likewise, eligibility criteria for the Disabled Rail Card, which gives a third off rail travel for the holder and a travel companion, vary depending on the type of disability but again most categories require proof of receipt of DLA.
Loss of access to the trains and buses (and also the Tube, trams and local area trains on the bus pass in London) will seriously hinder disabled people’s ability to get around – to go to work, to socialise, even to get to the shops – and participate fully in society.
And of course, loss of disability benefits means people will have no spare cash to pay for expensive taxis instead. Before I moved house, I worked out I was spending most of my monthly DLA on Coaches to London, local Buses (when on on-peak hours), and taxis at night – because it was too dangerous to walk home from the centre of Bristol in the evenings (it’s a 4 mile walk home from Bristol City Centre for me).
For many people loss of access to cheap or free travel could be even worse than the loss of the cash benefit itself.
Now we wait and see, when PIP gets introduced in 2013. Think about this “how will you get to work or survive without help via DLA / PIP payment or a Travel Bus Pass / Train Pass concession ?”
Urban transport authority bosses have issued a warning about funding for the free bus pass for disabled , and elderly.
Transport chiefs from the country’s largest provincial cities say funding the scheme means spending on other transport services could face a cut of 75% in 10 years’ time because although state funding is being reduced, costs are increasing.
Bosses from passenger transport executives in Greater Manchester, Merseyside, South Yorkshire, Tyne and Wear, West Midlands and West Yorkshire have now written to Transport Secretary Patrick McLoughlin to call for more central Government funding.
They say Government funding for providing the bus passes will be cut by 27% by 2014-15, despite the fact the cost of paying for it is rising.
Funding the scheme is said to now take up around half of all spending by the regional transport executives.
The transport bosses insist they have little influence over costs, while being legally required to fund it.
Because general funding for transport is also being slashed, the authorities insist the rising cost of the free bus passes means money supposed to be for other areas is having to be used. By 2022 they say frontline service funding is likely to be cut by three-quarters.
But David Wood, who chairs the group of six transport authorities, said the concessionary travel benefit for disabled and older people is hugely successful and that people want it to be maintained.
He added: ‘However, it cannot be right that the cost of providing what is a national statutory scheme, determined by national government, should create such a heavy funding burden for transport authorities in a way that threatens the future of the services that we provide for all members of our communities, including older and disabled people.
‘There will be little point in a free pass if the bus services that older people are using have to be withdrawn to pay for it.’
Norman Baker, the transport minister, insisted:
Last year we put in place reforms to help local authorities cut the costs of concessionary travel schemes and these reforms are already starting to take effect.
Councils face elderly bus travel ‘financial time bomb’
The national free off peak bus travel scheme for the elderly has created a “financial time bomb” which could see other services axed, the country’s largest provincial cities have warned
They have told Patrick McLoughlin, the Transport Secretary, more Whitehall cash is needed to prevent sweeping cuts elsewhere.
The warning has been sent by the six major passenger transport bodies serving passengers in Greater Manchester, Tyne and Wear, the West Midlands, South Yorkshire, West Yorkshire and Merseyside.
This is the latest blow to the scheme which offers pensioners and the disabled free off peak bus travel in England under a scheme which was introduced by Gordon Brown as he sought to win the backing of elderly voters.
It offers free off peak bus travel to pensioners and the disabled anywhere in England irrespective of the length of the journey.
Although the scheme has been maintained by the Coalition, councils have faced mounting difficulty finding the cash to pay for it.
According to the latest warning by major cities a raft of crucial services are at risk because of the cost of the scheme which could lead to a 75 per cent cut in other transport spending over a decade.
They include discounted travel for schoolchildren, bus services to isolated areas and dial-a-ride for the disabled.
The councils say that Government support for the scheme will fall by 27 per cent between 2010 and 2015.
“The national concessionary fares scheme allows older and disabled people to retain their independence, to access shops and services, and visit friends and family,” said David Wood, chairman of the Passenger Transport Executive Group representing the six areas.
“There will be little point in a free pass if the bus services that older people are using have to be withdrawn to pay for it. Nobody wants to see that – least of all older and disabled people.”
It is not only major urban areas which have been feeling the pinch, smaller local authorities have also struggled to find the money needed to support the scheme against a backdrop of spending cuts.
Last year pensioners in Hull were invited to give up their right to free bus travel to save some threatened services from the axe.
“Councils are having to contend with an ageing population continually driving up the cost of concessionary travel and government funding cuts,” said Peter Box, chairman of the Local Government Association’s economy and transport board.
The Government’s handling of the scheme was condemned by Maria Eagle, Labour’s transport spokesman.
“When David Cameron made his election pledge to protect their free bus travel, he didn’t tell pensioners that he would be taking away their bus instead. Yet older people are finding they are cut off from essential services and at risk of increased isolation as a result of the Government’s decision to cut funding for bus services by nearly a third.”
But the Department for Transport defended its handling of the scheme. “Statistics published by the Department just last week show that, per journey, the cost of concessionary travel went down, not up, in 2011/12,” a spokesman said.
“Last year we put in place reforms to help local authorities cut the costs of concessionary travel schemes and these reforms are already starting to bite.”
The pass is a vital concession for people with epilepsy who have been refused a driving licence because of their condition.The pass currently allows free travel on buses in England between 9.30 am and 11pm and all day at weekends. In Scotland and Wales the pass is valid at all times and includes free travel for a companion where needed. Some local authorities in England have implemented their own bus travel concessions and extended the hours of travel to include peak times.
WHAT IS NEEDED TO BE DONE URGENTLY BY YOU AND YOUR FAMILY !
Amanda Cleaver, communications and campaigns manager at Epilepsy Society, said:
We think this is confusing and unhelpful to those who need their pass for travelling to work. Epilepsy Society is campaigning for the same unrestricted operating hours throughout the UK . The proposed change would benefit anyone entitled to the pass and we hope we can count on wide ranging support.
We are also encouraging people to write to their MP on this matter and their local authority because they do have the power to make this change themselves.