Q&A on Epilepsy with Professor Martin Brodie


Although epilepsy is the most common neurological condition in the UK, over a quarter of epilepsy patients say they experience stigma as a result of the condition. Experts warn that the resulting psychological impact can be just as damaging as the seizures themselves.

We are delighted to present a detailed introduction to the subject of epilepsy in the form of a Q&A session with internationally renowned epilepsy expert Professor Martin Brodie.

PATIENTTALK.ORG – What, actually, is epilepsy?

PROFESSOR MARTIN BRODIE – . It’s the most complicated question because it’s a lot of different things and the bottom line is it’s a condition where people get unprovoked seizures that is seizures with no obvious provocation that you can then prevent and therefore prevent the actual seizures and the causes are thousands and thousands, anything that can affect the brain.

In about two thirds of cases there is an anatomical cause, sometimes we can see it on the scan increasingly so, sometimes not. In a third it’s due to low seizure threshold with a genetic component that may not be familiar in some situations that is a singular genetic mutation. In others it’s polygenetic and there’s a lot of different genes involved and so you can have seizures from infancy, from when you were born until when you are in old age and the commonest time now to develop epilepsy is in later life. With over 3% of over 80’s having seizures because they will have a possibility of things like strokes, vascular disease, hypertension, diabetes, dementia and all of these can result in seizures.

The interesting thing is not everybody gets the seizures and you know if you’re looking at say people with brain tumours which is an obvious cause of seizures for me the interesting question for me is not why 10% of people get seizures but why do the other 90% not get seizures, and so what we can see we don’t know the cause of we can get some idea of the possible mechanisms but the actual specific mechanism that the actual individual has is not available to us so therefore we cannot just pick the best drug we have to try the drugs out and try different drugs.


PATIENTTALK.ORG – Are there any clear symptoms of Epilepsy?

PROFESSOR MARTIN BRODIE – Well it depends on the type of Epilepsy that you have, sometimes in children they can stare straight ahead and miss stuff at school, sometimes the hands can jerk and jump or people can fall, sometimes they can stare into space and turn their head and look away and these are focal seizures and of course the severe ones where you fall down, jerk and shake all over, bite your tongue and don’t breathe during it, these are the tonic chronic seizures so there are lots of different types.

PATIENTTALK.ORG – And what are the long term struggles with the condition?

PROFESSOR MARTIN BRODIE – About two thirds of patients we can actually prevent the seizures with reasonable doses of medication and for many of these people after 6 months or a year they can get their driving licence back, you can get employment although there is still stigma against that and you can live a pretty normal life, you know you can’t fly an aeroplane but there’s a lot of other things that you can reasonably do. Unfortunately about a third of people that we don’t fully control the seizures and there it’s really life changing and these people don’t drive, they often have difficulty getting employment and I’m sure my two colleagues can tell you better than me how it effects their lives.

PATIENTTALK.ORG – Ok and what is idiopathic generalized epilepsy?

PROFESSOR MARTIN BRODIE – There are three main causes of idiopathic generalized epilepsy are the absence seizures usually in children and teenagers where they stare straight ahead, myoclonic seizures where their body jerks and then the tonic chronic seizures. The international league against epilepsy has brought out a new classification and I was actually on the body that did that so that we can get away from these terms that no one understands and doesn’t make any sense, so we are now talking about focal epilepsy where the problem is in one part of the brain or genetic epilepsy where there is a lower seizure threshold and there’s a malfunction so the idiopathic generalized epilepsy are the genetic epilepsy.

PATIENTTALK.ORG – And are there any other different types of epilepsy other than those that you have mentioned?

PROFESSOR MARTIN BRODIE – Well there are few rarer types in kids who have these seizures often with single gene mutations affecting the function of the brain, in older people there are a group of conditions called progressive myoclonic epilepsy which again are also single genes although there may be different genes and this causes jerking and seizures and often people can’t even walk because of the severity of it so really anything that can affect the brain as well firstly produce seizures and they are often different.

PATIENTTALK.ORG – Ok and I was going to ask what the relationship between autism and epilepsy is?

PROFESSOR MARTIN BRODIE – Autistic spectrum disorder is what we now call it as we realised its most things it’s not just one problem and I’m not involved in that area although we have patients coming to my clinic who have this problem and this is sort of a malfunction in the brain where the brain doesn’t fully function but if you actually do a brain scan it looks normal it just doesn’t function and a number of patients with autism also have seizures and that’s why they come to me otherwise they get sent to a specialist who works within that area and people with autism can be very intelligent or they can be not intelligent and again that can be one of the reasons to why it’s called Autistic spectrum disorder because the term covers different disorders.

PATIENTTALK.ORG – Ok are there any other conditions where comorbidity with epilepsy is common?

PROFESSOR MARTIN BRODIE – Yes any condition that effects the brain can be associated with seizures because seizures are evidence of brain dysfunction, so is depression, so is anxiety, anything that can affect the brain and many patients who have epilepsy also have one or other of these other symptoms, about a third of patients with newly diagnosed epilepsy also have depression or anxiety to a degree, about a half of patients with difficulties to control the epilepsy have psychiatric comorbidity because if you think about it these are all symptoms of brain dysfunction so it’s not surprising if the brains not working terribly well if they have different symptoms and the more of these symptoms that you have the more difficult the seizures are to control and we do try to control the other symptoms with the other medication and some of my drugs actually work for depression, some of them make depression worst so there is a pharmacological overlap between all these conditions that are associated with brain dysfunction.

Noncommunicable diseases prematurely take 16 million lives annually


Lupus Awareness Month

Lupus Awareness Month

Urgent government action is needed to meet global targets to reduce the burden of noncommunicable diseases (NCDs), and prevent the annual toll of 16 million people dying prematurely—before the age of 70 – from heart and lung diseases, stroke, cancer and diabetes, according to a new World Health Organization report.

“The global community has the chance to change the course of the NCD epidemic,” says WHO Director-General Dr Margaret Chan, who today launched the Global status report on noncommunicable diseases 2014. “By investing just US$1-3 dollars per person per year, countries can dramatically reduce illness and death from NCDs. In 2015, every country needs to set national targets and implement cost-effective actions. If they do not, millions of lives will continue to be lost too soon.”

The report states that most premature NCD deaths are preventable. Of the 38 million lives lost to NCDs in 2012, 16 million or 42% were premature and avoidable – up from 14.6 million in 2000.


Nearly five years into the global effort to reduce premature deaths from NCDs by 25% by 2025, the report provides a fresh perspective on key lessons learned.

Premature NCD deaths can be significantly reduced through government policies reducing tobacco use, harmful use of alcohol, unhealthy diets and physical inactivity, and delivering universal health care. For example, in Brazil the NCD mortality rate is dropping 1.8% per year due in part to the expansion of primary health care.

But the report calls for more action to be taken to curb the epidemic, particularly in low- and middle-income countries, where deaths due to NCDs are overtaking those from infectious diseases. Almost three quarters of all NCD deaths (28 million), and 82% of the 16 million premature deaths, occur in low- and middle-income countries.

“Best buys” to reduce the burden

The WHO report provides the baseline for monitoring implementation of the Global action plan for NCDs 2013-2020, aimed at reducing the number of premature deaths from NCDs by 25% by 2025. Outlined in the action plan are nine voluntary global targets that address key NCD risk factors including tobacco use, salt intake, physical inactivity, high blood pressure and harmful use of alcohol.

“Our world possesses the knowledge and resources to achieve the nine global NCD targets by 2025,” says Dr Oleg Chestnov, WHO’s Assistant Director-General for Noncommunicable Diseases and Mental Health. “Falling short of the targets would be unacceptable. If we miss this opportunity to set national targets in 2015 and work towards attaining our promises in 2025, we will have failed to address one of the major challenges for development in the 21st century.”

The report provides “best buy” or cost-effective, high-impact interventions recommended by WHO, including banning all forms of tobacco advertising, replacing trans fats with polyunsaturated fats, restricting or banning alcohol advertising, preventing heart attacks and strokes, promoting

breastfeeding, implementing public awareness programmes on diet and physical activity, and preventing cervical cancer through screening. Many countries have already had success in implementing these interventions to meet global targets.

Examples of regional and country “best buy” successes listed in the report:
• Turkey was the first country to implement all the “best-buy” measures for tobacco reduction. In 2012, the country increased the size of health-warning labels to cover 65% of the total surface area of each tobacco product. Tobacco taxes now make up 80% of the total retail price, and there is currently a total ban on tobacco advertising, promotion and sponsorship nationwide. As a result, the country saw a 13.4% relative decline in smoking rates from 2008 to 2012.
• Hungary passed a law to tax food and drink components with a high risk for health, such as sugar, salt and caffeine. A year later, 40% of manufacturers changed their product formula to reduce the taxable ingredients, sales decreased 27% and people consumed 25-35% fewer products.
• Argentina, Brazil, Chile, Canada, Mexico and the USA have promoted salt reduction in packaged foods and bread. Argentina has already achieved a 25% reduction in the salt content of bread.

Working on the ground in more than 150 countries, WHO is helping develop and share “best buy” solutions so that they can be implemented more widely. WHO is also helping countries understand the dimensions that influence NCDs outside the health sector, including public policies in agriculture, education, food production, trade, taxation and urban development.

Meeting global targets

Though some countries are making progress towards the global NCD targets, the majority are off course to meet the 2025 targets. While 167 countries have operational NCD units in the ministry of health, progress on other indicators has been slow, especially in low- and middle-income countries.

As of December 2013[1] only:
• 70 countries had at least one operational national NCD plan in line with the Global NCD action plan
• 56 countries had a plan to reduce physical inactivity
• 60 countries had national plans to reduce unhealthy diets
• 69 countries had a plan to reduce the burden of tobacco use
• 66 countries had a plan to reduce the harmful use of alcohol
• 42 countries had monitoring systems to report on the nine global targets
NCDs impede efforts to alleviate poverty and threaten the achievement of international development goals. When people fall sick and die in the prime of their lives, productivity suffers. And the cost of treating diseases can be devastating – both to the individual and to the country’s health system.

From 2011-2025, cumulative economic losses due to NCDs under a “business as usual” scenario in low- and middle-income countries is estimated at US$ 7 trillion. WHO estimates the cost of reducing the global NCD burden is US$ 11.2 billion a year: an annual investment of US$ 1-3 per capita.

High rates of death and disease, particularly in low- and middle-income countries, are a reflection of inadequate investment in cost-effective NCD interventions. WHO recommends all countries move from commitment to action, by setting national targets and implementing the “best buy” interventions starting in 2015.

Atrial Fibrillation – Eve Knight CEO of Anticoagulation Europe tells about the current state of the support avaialble to people with AF


Atrial l Fib

Atrial l Fib

The NHS regulator NICE has today recommended that people taking a thinning agent can monitor their own blood levels at a time and place convenient to them. In the guidance, NICE recommends using the CoaguChek® XS self-monitoring device.

This means that more people taking a thinning agent should be able to self-monitor (or ‘SelfieChek’), rather than being tied to frequent (sometimes weekly) clinic or hospital visits to have their blood clotting levels measured. Self-monitoring allows people taking a thinning agent to enjoy a flexible lifestyle and reduces the risk of stroke for people with atrial fibrillation or a replacement heart valve.The guidance is also set to benefit the NHS by reducing the unnecessary burden that regular blood checks place on healthcare professionals’ time and resources.

PatientTalk.Org spoke to Eve Knight of Anticoagulation Europe, about the background and implications of the new regulations.  Cody conducted the interview on our behalf.

 

CODY– If you could just start by telling us a little bit about yourself, who you are, and what you do and what your role is?


EVE KNIGHT My name is Eve Knight and I’m co-founder and chief executive of the charity of the Anticoagulation Europe, chief executive basically means I’m responsible for  everything although I do have a really great team who work with me and lots and lots of volunteers around the country.

CODY So what’s the cause of the Anticoagulation Europe, what are you guys trying to achieve?

EVE KNIGHT  Anticoagulation Europe was founded 14 years ago, our aims are the prevention of thrombosis, the provision of information and support for health care professional and patients and their families and to make sure that the patient voice is at the centre of everything of the NHS does, particularly anyone who is designing anticoagulation services.

CODY Great, so were talking today about Atrial Fibrillation and some new NICE guidelines, so could you just explain to us why anyone would need to take a blood thinning agent? So what conditions require it and how does it work?

EVE KNIGHT There are a number of conditions that you would need to take an thinning agent, Atrial Fibrillation being one of them, replacements heart valves, deep vein thrombosis, Pulmonary embolism and genetic clotting conditions, the guidance that has been issued today is specifically for  Atrial Fibrillation and replacement heart valves.

CODY So how does the blood thinning work?

EVE KNIGHT It doesn’t actually thin the blood, what warfarin does is to inhibit the production of Vitamin K in your liver, vitamin K is the vitamin that causes your blood to clot and we all need our blood to clot otherwise when we cut ourselves we would bleed to death. Warfarin inhibits the production so not so much Vitamin K is produced so your blood takes longer to clot.

CODY So who does Atrial Fibrillation affect because I was reading through this today and I was surprised to find out that it actually affects quite a few young people as well as old?

EVE KNIGHT It does affect young people , the major co halt of patients are older, 1 in 8 of us by the time we are 65 will have Atrial Fibrillation but it does affect younger people and what your trying to do with warfarin is to reduce the risks of strokes and young people regrettable do have  strokes.

CODY  Do you have any idea how many people this condition affects and how many people are treated with a thinning agent at the moment?

EVE KNIGHT In the UK about 1 million and a quarter of people are on warfarin, there’s about 800,000 people diagnosed with Atrial Fibrillation and approximately 40% of those are not on an Anticoagulant or they may be on aspirin and aspirin Nice have now said is no good for preventing strokes you have to be on an Anticoagulant, So there’s a huge co halt of patients who will now need to go onto an Anticoagulant.

CODY  – And that was during this year?

EVE KNIGHT That was in June this year yes.

CODY  – Do you know why they decided to make that recommendation?

EVE KNIGHT  – Well this was a complete update of their 2006 guidance and they made several new points, it’s long been thought or known that aspirin is not as effective as warfarin as preventing strokes and yet it carries virtually the same bleeding risks. So finally the sway of opinion has come together on that and NICE have said that aspirin no longer be used as a mono therapy in preventing strokes for AF.

CODY – So someone on this kind of treatment, how often do they have to visit a clinic or a hospital for check-ups?

EVE KNIGHT That depends very much, everybody on thinning agent will be given a therapeutic range and that will differ depending on the condition for which you’re taking it. In the first few weeks when you go onto a thinning agent you are very likely to be very unstable so you may be going every 3 days/ twice a week, it will for most people eventually settle down and then for a lot of people it varies between once a week and once every six weeks.

CODY  – So even when it settles down it’s a lot of visits?

EVE KNIGHT – It’s a lot of visits and it does very much depend, you know a thinning agent is quite an unstable product with a very narrow therapeutic window. So things you would normally do, things you would eat, things you drink, other things  you take, all of these can have an effect on a thinning agent and make it go up or down and that would mean you go out of your range and if you go too high out of your range you’re at risk of a bleed and too low out of your range you at the risk of a clot and if your dose, if your range is varying, then you dose will need to be altered.

CODY – Can you briefly just explain the role that NICE plays?  Who they are to be issuing recommendations?

EVE KNIGHT NICE is the body that issues recommendations and regulations for what is used drugs or diagnostic tools within the NHS.

CODY So they have recommended that people can now monitor their blood levels at home.  Can you explain a little bit about how the CoaguChek device works?

EVE KNIGHT NICE have recommended for people with AF and replacement heart valves that self-monitoring is clinically effective, it’s safe and it’s cost effective for the NHS.  A CoaguChek XS is a hand held monitor that you place a little strip into.  You prick your finger with a pen needle much the same as diabetics and you take the tiniest drop of blood and you drop that or swipe onto the strip.  Within two minutes the monitor gives you your INR range.  So it tells you if you’re within your therapeutic range.

 

CODY Is this quite new technology or is this recommendation coming in after it’s been proven over a period of time?

EVE KNIGHT This recommendation is coming a long time after the technology.  In Europe it’s probably 28, 30 years.  In this country it’s in excess of 20 years so it’s taken a long time to get to this point but we very much welcome NICE’s recommendation.

CODY Why do you think it’s taken so long for the recommendation to be made if it would seem to be obvious?

EVE KNIGHT To be honest I really don’t know why it’s taken so long.  None of the companies have put into NICE for them to look at it.  In fact NICE were actually asked by a patient to look at this and I believe that it’s the first time a patient has asked NICE to actually look at something and issue guidance.

CODY That’s interesting.  In the same vein why do you think only 15% of GP’s in the UK currently offer self-monitoring to their patients?

EVE KNIGHT I think there are many reasons for that.  Cost or the thought that it will cost too much is possibly one.  I think a number of GP’s have not been convinced of its safety and now this guidance is out I am hoping that will change that.  I think also we tend to take a longer time in this country to actually adopt new technology.  I mean the Prime Minister David Cameron actually said in a speech in 2011, he used self-monitoring as an example of what was good  about the NHS and what could be used in the NHS but he also recognised in that speech that we are not very good at bringing these things to the table and getting on with them.  Now we’ve got the guidance I sincerely hope it’s about time we will get on with it.

CODY So you did mention cost briefly there.  I suppose we have to treat it over a long time frame because if you are continuously visiting a GP there is a large cost involved in that as well.  What sort of cost outlay is there for this sort of self-checking treatment?

EVE KNIGHT Well there are two sets of costs.  Costs for the NHS which is the cost of taking the blood sample, sending it off to the lab, getting it back from the lab, contacting the patient and all that sort of thing.  There’s also the cost of if you get it wrong; the cost of strokes.  Strokes are extremely expensive things to treat in the NHS.  For patients if they are going to clinics or their GP they have got the cost of getting there, the cost of taking time off work/ off school so there are lots of different costs involved.  The long term cost savings for the NHS will be two fold.  It will be that patients are self-monitoring at home frees up more time for the clinics to deal with people who don’t want too or for people it’s not clinically suitable.  Also it has been proven in research that there are less strokes, less thrombotic events when people do self-monitor so the long term costs of saving life’s and saving money is there.

CODY I suppose you can avoid missed appointments and things like that?

EVE KNIGHT You avoid missed appointments and also when you self-monitor because you tend to self-monitor a little more frequently you don’t tend to make so many alterations to your dose so there are less chances of you being in and out of your range.

CODY Anticoagulation Europe are supporting and calling for more self-monitoring.  What does success look like for you? 100% uptake?

EVE KNIGHT No there will never be 100% uptake.  Some people will not want to self-monitor and that is quite right.  No one is saying people have to self-monitor.  It is a choice for patients and that’s the beauty of it.  Its having a choice about what you want to do and how you want to live your life.  Success for me would be getting an awareness of this out to patients and the general public so if they want to they can have these types of conversations with their GP or their anti coag nurse and then make a decision on the benefits of self-monitoring, would it be right for them.  Success would also be and we will be campaigning for it, to get these monitors available on prescriptions alongside the strips that go with them so that people are not discriminated against by not being able to afford to purchase this monitoring equipment.

Stroke Awareness – Get informed and share with others.


Stroke Awareness

Stroke Awareness

As we mentioned in recent post on World Heart Day noncommunicable diseases are now the planets biggest cause of premature death. The post gives some handy advice as to how to lower your salt consumption which in turn lowers your risk of having a stroke.

So we thought it would be a good idea to share Donnee Spencer’s brilliant stroke awareness butterfly. It would be great if you could share this with your freinds and famil

A as a way of reducing the risk of a stroke you may well wish to lower your cholesterol intake as well as your salt and sodium usage. Check out this article for some great tips on how to do so here.


WORLD HEART DAY 2014: SALT REDUCTION SAVES LIVES


World Heart Day 2014

World Heart Day 2014

As regular readers of this blog know I am rather skeptical about of lot of MedEd (medical education for those not in the in crowd). Actually much of it is total rubbish. And it strikes me the bigger the organisation the more rubbish it tends to produce. You know who you are! But no names no pack drill!

So you can imagine my delighted when an email about World Heart Day dropped into my inbox. One of those great occasions when I’m sent something which is actually useful. Mainly about salt reduction it does not just say why but much more importantly it says how.

On World Heart Day, which takes  place on 29 September, the World Health Organization (WHO) is asking us to take action on the overuse of salt.  They feel we can do this  by implementing their sodium (the main source our diets is salt)  reduction recommendations.   This they say reduce the number of people experiencing heart disease and strokes.


In fact noncommunicable diseases, including heart disease and stroke, are now the main causes of premature death .

“If the target to reduce salt by 30% globally by 2025 is achieved, millions of lives can be saved from heart disease, stroke and related conditions,” shares Dr Oleg Chestnov, WHO Assistant Director-General for Noncommunicable Diseases and Mental Health.

As we noted above main source of sodium in our diet is salt. But it also come from  from sodium glutamate and sodium chloride, and is used as a condiment in many parts of the world. In the developed world WHO claim 80% of salt intake comes from processed foods such as bread, cheese, bottled sauces, cured meats and ready-made meals.

Too much sodium to hypertension, or high blood pressure, and there or up the risk of things like  heart disease and stroke.

On average, people consume around 10 grams of salt per day which is twice as much as we should.

“Salt is in almost everything we eat, either because high levels of salt are found in most

Salt reduction boost health

Salt reduction boost health

processed and prepared foods, or because we are adding salt when we prepare food at home,” adds Dr Chestnov.

Government and NGos wouldn’t be government or NGOs if they did not call for greater regulation.  So they kick off with:-

  • regulations and policies to ensure that food manufacturers and retailers reduce the levels of salt in food and beverage products;
  • agreements with the industry to ensure that manufacturers and retailers make healthy food (with low salt) available and affordable;
  • fostering healthy eating environments (that promote salt reduction) in public places such as schools, hospitals, workplaces and public institutions;
  • ensuring clear food labelling so consumers can easily understand the level of salt in products;


But what about us.  Because that is where it really counts as we all know.

  • reading food labels when buying processed food to check salt levels; (or of course you can give process food a miss)
  • asking for products with less salt when buying prepared food in restaurants etc
  • removing salt dispensers and bottled sauces from dining tables;
  • limiting the amount of salt added in cooking to a total maximum amount a fifth of a teaspoon over the course of a day;
  • limiting frequent consumption of high salt products;
  • guiding children’s taste buds through a diet of mostly unprocessed foods without adding salt.

 

They also gave us a few links so please check them out!