Ilegal . org . uk Calls for IDS to sink under his dodgy stats

Via : http://ilegal.org.uk/

It's time he went under

Seriously, IDS is getting away with blue murder and it's time he was seriously challenged.


In the previous two posts I've drawn attention to what I consider to be a major inconsistency in the DWP's Employment & Support Allowance statistics.  By major I mean major as in three quarters of a million.


This is the latest figure I've unearthed by making a simple comparison between two sets of DWP statistics.  The two I compared were:


The DWP Work Capability Assessment statistics which crucially tell us (1) How many claimants have been found fit for work and (2) How many claimants stop claiming without an assessment.  These figures tell us lots of other things but for the purpose of this latest comparison only (1) and (2) are relevant. 


The DWP 'off flow' statistics which tell us how many claimants have come off Employment & Support Allowance ever since it first started in October 2008.


It is to me logical to base an assumption (there are exceptions which for now I would ask you to put on hold) that those found fit for work and those who have ended their claims as shown in the Work Capability Assessment statistics will translate in to a minimum number which I would expect to see in the off flow statistics.  


What these figures show is that the actual numbers of claimants is far less, by over three quarters of a million, than the assessment figures suggest.  


This discrepancy highlights, to a considerable extent, the enormity of a problems which exists within the Employment & Support Allowance assessment programme.  These figures show that despite the purported assessment outcomes. 2.1 million claimants remain entitled to Employment & Support Allowance rather than over 2.8 million claimants being removed from their benefits as implied by the assessment statistics.  


What these figures show is a huge disparity between the 2,882,500 claimants identified as moving off Employment & Support Allowance in the assessment statistics and the 2,125,830 shown in the claimant figures as the real number of claimants who ended their claims - a difference of 756,670 claimants.  It's not a figure which IDS can easily explain away.


It should also remembered that the higher figure of 2.8 million is very much a minimum baseline because it only relates to findings at or near the point of assessment.  Many more will have ended their claims for all kinds of other reasons, these won't be picked up in the assessment figures but the higher the figure the greater the three quarter million discrepancy.  This is because the actual numbers ending their claims is a figure depicted by the DWP's actual records of claimant's movements on and off the allowance. 


So why haven't 756,760 ESA claims ended as depicted in the assessment statistics come off the allowance?


Unfortunately I can't pretend this isn't complex and something which can be easily followed by all, none the less I'll try and put it over in a way which I hope followers will understand.


The assessment statistics show a total of 2,882,500 claimants who have come off ESA between October 2008 and June 2013.  Of these we know for certain that 1,393,700 are claimants who have ended their claims before an assessment. Once these claims are ended they come to an end, there's no going back so this is a firm figure which is non - reversible.  


Instead of deducting the 1,393,700 closed claim figure from the assessment total, we can deduct it from the actual numbers of claimants who have closed their claims.  This means deducting the figure from 2,125,830 which gives us 732,130.  


What's strange about this is how it very firmly bites in to the numbers the DWP say have been found fit for work. We can safely deduct the 732,130 (because we know for sure all closed claims before assessment would definitely have ended their claim) from the 1,488,800 claimants found fit for work - a difference of 756,670.  The reason we can safely deduct from the fit for work figure is that it is reversible - it can be changed after the assessment results by people appealing or asking for reconsiderations.  


The irrefutable fact is that despite whatever the fit for work figures say around 50% of claimants are not in fact ending their claims at all, if they were the overall number of closed claims would be much, much higher.  So something very substantial isn't adding up. 


The only explanation to this three quarter of a million discrepancy is that the 1,488,800 found 'fit for work' figure has been changed to one of two different status:


(1) The claimant has appealed and their appeal is still ongoing (which is why they do not come off the allowance). This is possible under the Employment & Support Allowance rules up to October 2013.  Upon electing an appeal, the claimant moves/stays in the Assessment Phase up until their appeal has been heard.


(2) The claimant has appealed and the appeal has been decided in their favour in which case the claimant remains on Employment & Support Allowance within either the Work Related Activity Group or Support Group.  


Cases which the DWP depict in the assessment statistics as 'still in progress' can be eliminated from the possibility that they contribute to the three quarter of a million figure because I have excluded them from the calculation. 


So how is the 756,670 figure made up?


In dealing with (1) by looking at more DWP statistics we can ascertain that in May 2013 there were 70,940 ESA claimants of 'unknown' status and 490,260 in the Assessment Phase.  All of these claimants will either be awaiting an assessment or will have been found fit for work and appealed, there is no other way of being placed in the Assessment Phase.  There is no way of distinguishing between the two.


In dealing with (2) we can look at separate records held by the Her Majesties' Courts & Tribunals Service (HMCTS) to see how many claimants had successfully appealed up to June 2013, the majority of these will be appeals against fit for work decisions. 


The DWP maintain in the assessment statistics that they only had been able to retrieve data from HMCTS Tribunals relating to 125,600 ESA appeals overturned in the claimant's favour.  I would however suggest that the three quarter of a million discrepancy paints a very different story.  


The way to get to the root of this is to look at the Tribunal overturns shown below: 

Year / Quarter	ESA appeals cleared	% in favour	Number of appeals in claimant's favour
2008/2009	27	4%	Not shown
2009/2010	50,791	37%	18,793
2010/2011	127,114	37%	47,032
2011/2012	168,020	39%	65,528
2012/2013	224,375	43%	96,481
2013/2014
Q1 Up to June 2013	77,227	42%	32,435
Total			260,269

The figure of 260,269 is well above the 125,600 recorded in the assessment statistics and would therefore appear to suggest that the DWP have updated all of the 260,269 overturns in the claimant count.


If we deduct the 260,269 from the 756,670 figure we arrive at 496,401
which more or less mirrors the 490,260 in the Assessment Phase in May 2013.  So it is possible that these will represent a fair number who have appealed. 


Can we simply say of the 756,670 figure; 260,299 are the claimants who have had their decisions overturned and the remaining 496,401 are in the appeals process?  


The answer is no.


Why?


Because of the 2,125,830 number of claimants who have definitely ended their claims (as shown in the off - flow statistics) a fair number (not fully disclosed by the DWP) will have ended their claims in either the Work Related Activity or Support Group of their own accord.  


The more claimants who end their claim of their own accord, the higher the number will be of fit work decisions which have either been overturned or appealed (because these claimants remain on ESA and will not show as off - flows).


The other consideration is that the DWP are overturning far more decisions from fit for work to entitled at the reconsideration stage than they are currently conceding to.  


The fact is there is a three quarter of a million discrepancy between those identified in the assessment statistics and those actually coming off ESA.  

Report to the Labour Party by the Disability and Poverty Taskforce April 2014

Via : > http://vsocjustice.blogspot.co.uk/



Promotion: Report to the Labour Party by
the Disability and Poverty Taskforce April 2014

Breaking the Link between 

Disability and Poverty

Report to the Labour Party 

by the Disability and Poverty Taskforce

April 2014

This ground-breaking report was launched today 24 April 2014. Alas it has been said the Labour party, who commissioned the report, will not be promoting it. This leaves disabled people to do the promoting themselves.

This blog post today is soley for promoting this report.

Below are tweets I (vsocjustice) sent today outlining the report in brief. I (vsocjustice) also created a pdf version specially for those who wished it. Here is the link. DOWNLOAD FROM FOLDER

Breaking the link between Poverty & Disability - report by Bert Massie http://t.co/gipgALEm5Y #disability #poverty Apr 24, 2014 

Bert Massie & his Poverty Taskforce says DLA/PIP are not doing the job. There needs to be a third element to these #disability benefits 1/2 Apr 24, 2014

2/2 The mooted Disability Costs Allowance will accurately reflect its purpose & would comprise elements for mobility, care & general costs. Apr 24, 2014

Massie's Disability & Poverty Taskforce also say the 20 metre limit imposed by IDS should be removed and made 50 meters once again. Apr 24, 2014

Massie's Disability & Poverty Taskforce says more effort should be made to give disabled people their rights and better access to justice. Apr 24, 2014

Massie's taskforce: There should be investment…a sea-change in employer behaviour on recruitment, development & retention of disabled people Apr 24, 2014

Joseph Rowntree Foundation: “The effect of removing DLA & Attendance Allowance from incomes is to double the number of people in poverty" Apr 24, 2014

Massie's taskforce: Disabled people’s financial status also makes them disproportionately vulnerable to financial exclusion & exploitation > Apr 24, 2014

> that can further erode their capacity to escape poverty." "Disabled adults…twice as likely as non-disabled…to live in persistent poverty." Apr 24, 2014

"Other European countries…Sweden, Iceland, Estonia, Switzerland, Denmark, Germany all achieving disability employment rates above 50%" >> Apr 24, 2014

The employment rate in UK for disabled people's significantly lower than in many European countries according to Bert Massie's task force. Apr 24, 2014

Massie's taskforce says: "Disability is expensive. Disabled people experience both an income penalty & a cost of living penalty: they are > Apr 24, 2014

>likely to face complex barriers to getting & keeping a job…be unable to work or…work full-time; they have costs…non-disabled people do not" Apr 24, 2014

Bert Massie's taskforce report on Disability & Poverty is in .doc format only. Ive created a PDF version: http://t.co/s83KzaPOSx Apr 24, 2014

#luxuryonthesick NOPE.

Nope . 

ESA+h/ben +council tax support for ME as a total, is below The poverty line which is 

" A family or individual is considered to be in poverty when post-tax income falls below 60 per cent of the national median – £367 a week, which is £220 a week." 

As all three added up is below that £220 definition. And With the contribution to council tax , thats a tax. So I am correct that ESA, for me,  is below the poverty line.

Media often is on about people Raking it in . *coughs* its a media myth. 

Mental Health failures in welfare system ...

UPDATE ON THE MHRN COURT CASE FOR THOSE WITH MHP's

WCA JUDICIAL REVIEW UPDATE.

There will be a three day hearing in the Royal Courts of Justice in London on 22, 23 & 24 July 2014 in an attempt to establish what the DWP is going to do to remedy the substantial disadvantage that people with mental health problems suffer when being put through the Work Capability Assessment. This will follow a directions hearing that will take place in May.

Everyone knows that the only real remedy to our plight will be when these mock assessments are abandoned but, until then, we will continue the fight to try to improve them.

The case centres around the importance of further medical evidence for a person with mental health problems and on who is responsible for obtaining this evidence. Both the MHRN and the judges believe that such evidence is vital and that the DWP should be responsible and proactive in obtaining it. For their part, the DWP don't want to know about medical evidence from a claimant's own mental health professionals because the WCA is not an assessment of a person's mental health condition but a dummy assessment that pretends that how a person functions can be separated from any condition they live with. The last thing the DWP want is real evidence from someone who might be qualified to comment!

It is possible that some kind of pilot study will be undertaken by? maybe Atos? to try to establish how they could go about obtaining this evidence. Under the Equalities Act, the DWP should be making reasonable adjustments to the assessment to accommodate our problems and it has been successfully argued that obtaining such evidence would be a reasonable adjustment. We can probably predict that they will try to show from a pilot study that such adjustments would be too expensive, unhelpful and unworkable, and therefore unreasonable. It will be for us to keep an eye on the progress of any pilot and to make sure they know that we are all watching them.

We will be in court and will keep you informed.

---------------

LEON gave me this. 

Expensive Meds? They wanna drop One for cost?

Latest consultant letter to my doc 

" I reviewed this pleasant individual in clinic today..." 

"..tolerating medications.." 

"nothing that we didnt already know..."
(summary of issues) 

 "Doesnt wish to change a working regime.."
"In view of this I have continued.." 

 "will review this in six months" 

The review bit is to remove one of my meds, due to cost. THEY TOLD ME ITS EXPENSIVE. 

I dont want that . I won this time, maybe not next time.

TRIBUNAL: Regarding IB/ESA claimant death figures - Mr M. Sivier

Diary marker

Tribunal – Law Courts, Cathays Park, Cardiff, April 23, 2014 at 10am

Incapacity benefits – deaths of claimants

A tribunal will decide whether the Department for Work and Pensions should be ordered to release its statistics on the number of people who have died while claiming Incapacity Benefit or Employment and Support Allowance, at a hearing next week.

The First-Tier Tribunal (formerly the Information Tribunal) will be hearing an appeal by Vox Political blogger Mike Sivier, against a decision by the Information Commissioner and the DWP to refuse a Freedom of Information request on the subject.

The DWP published an ‘ad hoc statistical release’ in July 2012, showing that 10,600 claimants died between January and November 2011. Of these, 3,500 – or 73 people every week – were either going through the assessment process or had been put in the work-related activity group, intended for people who were expected to recover within a year, when they died.

The revelation provoked outcry from people suffering from disabilities and long-term illnesses, and seems to have discouraged the DWP from continuing to publish the figures.

Mr Sivier made his request in June 2013, after learning that the DWP had refused previous requests. The department at first claimed there was no intention to release any further statistics, and the information would take a great deal of time and effort to gather and collate – this is not true. In fact, the DWP later admitted that it does hold the information, and could provide it within the cost limit.

The next excuse was that the Secretary of State, Iain Duncan Smith, accepted that there was interest in the figures and was considering how to publish them. This was claimed in August 2013. Since no plan to publish these time-sensitive figures after nearly nine months, we must conclude that, like the previous claim, it is not true. The figures are time-sensitive because it is important that the system be improved to prevent unnecessary deaths. Delays in publication mean the figures are unlikely to be used in that way.

Seeing that the DWP had brushed aside privately-made requests, Mr Sivier ensured that his was public knowledge by writing an article about it in his blog (at http://mikesivier.wordpress.com/2013/06/25/dwp-refuses-to-provide-information-on-esaib-deaths-what-is-it-hiding/). As an afterthought, he included a line encouraging readers to follow his example, if they believed the issue was important, reasoning that the DWP may give more weight to it if it was known that there was general concern.

The DWP refused the request, claiming it was “vexatious” under section 14(1) of the Freedom of Information Act 2000. Officers had visited the blog and concluded that the last line, “I strongly urge you to do the same. There is strength in numbers,” constituted a co-ordinated campaign of harassment against the department.

Mr Sivier believes this is nonsense and appealed to the Information Commissioner on this basis. But the Commissioner was persuaded by the DWP and upheld the decision, forcing Mr Sivier to take the matter to the tribunal.



UPDATE HERE: http://t.co/WUNO2cmcRL

Scrutiny in Parliament? A little dig under the surface...

Myself and Wayne were chatting regarding the Maria Miller what can only be called ...  debacle .

Wayne raised a few questions that spurned his research, I , as is Wayne, am TOTALLY gobsmacked by what came out of both of our questioning of this. 

Wayne agreed to write it up. All I'd add is that the whole thing absolutely reeks , I'll let Wayne explain below. 

As many of you already no doubt are aware, Maria Miller, Conservative MP and Culture Secretary, was today slapped rather tamely on the wrist, ordered to apologise and repay £5,800 after being found to have overclaimed the money on her mortgage in 2009.  Despite a hugely critical report by Kathryn Hudson, Standards Commissioner, Ms. Miller is still in her job and in the Cabinet.

Needless to say, I think the decision is ridiculous and Maria Miller, at the very least, should be resigning immediately from both the Cabinet and Parliament.  But what really astounds me is that the decision was made by a group of her peers - ie. other MPs who sit on the House of Commons Committee on Standards, and not an independent body or the Police.  It’s frankly ludicrous that this group was allowed to decide on this matter.  So it got me wondering, who exactly sat on this Committee?

Well, thanks to this document (Page 5) I can tell you that the current membership of the Committee is as follows:

For some reason that I cannot explain, the list set off some alarms bells in the deep recesses of my brain.  Whether is was something I’d read during the expenses scandal, or something more recent, I’m not sure, but a couple of the names jumped out at me.  So, at a little after midnight this evening, I decided to do a little Googling and see what I could find on these members of the “Standards Committee”.

And I was astounded at what I found.  Let’s go through them one by one, shall we?

Rt Hon Kevin Barron MP (Chair)

Mr Barron claimed £1500 a month to rent from a colleague, as reported by the Telegraph here.  This is the man who sits as CHAIR of the Standards Committee, and yet is found to be doing this.

Sir Paul Beresford MP

Sir Paul, one of the most influential dentists in the country, designated his West London home, which included his surgery, as his second home on his parliamentary expenses.  He claimed thousands on this “second home” according to the Telegraph here.

Mr Robert Buckland MP

Mr Buckland was elected to the House of Commons in 2010.  This, of course, means he was not part of the expenses scandal that we all saw in 2009.  He has, however, been criticised for claiming energy bills on expenses (see the comments at the bottom for details of his claim).

Mr Christopher Chope MP

Well, where to start?  Mr Chope not only claimed over £800 to strip down and recover a sofa, he also claimed £10,000 to re-roof a property owned jointly with his wife.  He claimed £136,992 in 2007/08. The report is here.  And he sits on the Standards Committee??

Rt Hon Mr Tom Clarke MP

Mr Clarke designated the Sloane Club in Chelsea as second home, and claimed about £1,500 a month while in London. Claimed £400 a month for food, according to the Telegraph.

Mr Geoffrey Cox MP

Whilst Mr Cox has been quite open and transparent regarding his expenses claims, questions have been raised about the amount of money Mr Cox earns from his second job.

Sir Nick Harvey MP

Sir Nicholas Barton Harvey claimed money for renting a property in London whilst also renting out his own property, as the Huffington Post revealed here.  He also, shamefully, accepted £7.20 in expenses forattending a Rememberance Sunday parade.

Fiona O’Donnell MP

In 2010 Ms. O’Donnell had to defend expenses that were the highest in Scotland, with over £14,500 in a three-and-a-half month period.  She was elected in 2010.

Heather Wheeler MP

Mrs Wheeler was elected in 2010.  She was criticised over claiming energy bills last year.

Dr Alan Whitehead MP

Dr Whitehead claimed mortgage interest payments of up to £730 per month on his second home in London. Also claimed £1,942.98 for a replacement boiler according to the Telegraph.

Annette Brooke MP

Mrs Brooke has been criticised in her local press for having the highest expenses claims in Dorset.  She also claimed expenses for fizzy drinks and chocolates, despite leading a fight against obesity.

So, despite a couple of notable exceptions, all of the so-called House of Commons Committee on Standards have previously had their own issues with expenses and parliamentary standards.  Not exactly the impartial group you’d want to be conducting this sort of investigation into one of their peers, is it?  And it’s also noteworthy that over half the Committee are Coalition members, who I have absolutely no doubt will have wanted to support their colleague.

It’s simply not good enough, and there are definite questions that need to be answered here.  

Not least being why the hell is the Committee on Standards made up of people who have fallen so badly foul themselves of the rules on standards themselves?



4th April, Guardian, had this to say > http://www.theguardian.com/politics/2014/apr/04/maria-miller-expenses-claims-referred-police-labour-mortgage

Digital Inclusion - A few thoughts

Much speak of digital inclusion flies around training people to use stuff.

PLEASE STOP.

If people havent got stuff, and net access theres really little point to that.

Whats needed is a social utility, part of infrastructure.

How simple is , for instance ...
Wifi to estates / let property as PART of the portfolio of provided services, an outcome//benefit/service associated to and run by the landlords?

If landlords provide the wifi by whatever means, tenants wont be spending money on broadband instead of rent when things get tough.
(thats for those who can actually GET contracts, lots cant)

It then removes one obstacle to digital inclusion that is rarely spoken of.

One simple investment infrastructure that effectively enhances contact and engagement with tenants. With the wider social benefit of one hole in digital inclusion being filled.

Wider, working with councils to provide to all?

What do you think? Ubiquetous Wifi?

Luxury on the sick? NOPE

I need one of these. Cant afford though > http://www.ebay.co.uk/itm/External-Battery-Charger-HP-6720-6730-491278-HSTNN-IB51-/400216443724?pt=UK_Computing_LaptopAccessories_PowerSupplies&hash=item5d2ec24b4c

Or i need a new charging port, but thats likely over 150 quid.

So thats impossible on the money I get for ESA, but everyone wants Digital, and I do stuff digital.

So mr IDS and all media. THIS ISNT LUXURY and yet its stuff you all can DO without blinking.

So luxury on the sick? Get real will ya.

How little I knew about : Epilepsy

So people Dont know about this, I didnt until a lady who has epilepsy told me about it. 

Strange how people know so little about illnesses. And they panic too if they see fits. Someone who lives quite close has epilepsy and I whats commonly called "boned up" on what to do if I see him fit. 

I realised I didnt know about it at all, even though I know several who have it. More shame on me. 

"There's so much more to living with epilepsy than having seizures. There's depression, insomnia, low self esteem, low self worth, no confidence, sexual issues and more."

So 

In support of awareness: 

Courtesy of : Epilepsy Action 

The definition of sudden unexpected death in epilepsy (SUDEP)

The causes of SUDEP
Risk factors of SUDEP
Ways to reduce the risks of SUDEP if you have epilepsy
Ways to reduce the risks of SUDEP for someone who is having a seizure
Further information about SUDEP

Introduction 

Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. This information is about one significant risk, and that is sudden death due to epilepsy.

It is important to remember that the risks of dying because of epilepsy are low. There are also things you can do to make the risks even lower.

Many people who knew somebody who died due to SUDEP have told us they wished they had known more about the risks, before the person died. Therefore, the aim of this information is to raise awareness of the risk of sudden death associated with epilepsy. It also offers practical advice and suggestions on ways to reduce this risk.

There have been many studies carried out into SUDEP and research is continuing. However, SUDEP is still not fully understood by medical professionals. In this information, we can only tell you about the current understanding of SUDEP.

If you would like to discuss anything to do with SUDEP, you could speak to an adviser on the Epilepsy Helpline, freephone 0808 800 5050 (UK only). You could also contact your family doctor, epilepsy specialist, or epilepsy nurse.

The definition of sudden unexpected death in epilepsy (SUDEP)

If a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.

The causes of SUDEP

SUDEP has been shown to be connected with seizures. The exact cause is not known and there may be no single explanation. However, it is thought that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This could cause the person to stop breathing or their heart to stop beating.

Risk factors of SUDEP

It is estimated that SUDEP happens to one in every 1,000 people with epilepsy. There is no way of predicting who will be affected by SUDEP. However, some people with epilepsy have a higher risk of SUDEP than others. The single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure that causes the person to lose consciousness. Their body goes stiff and then starts jerking.

SUDEP has occurred in people who had seizures very often, and also in people who did not have them very often. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP if you are seizure-free is very, very low. And, SUDEP is rare in people who are newly diagnosed with epilepsy.

Any of the following things are thought to increase a person’s risk of SUDEP.

Having uncontrolled generalised tonic-clonic seizures
Not taking epilepsy medicines as prescribed
Having seizures that are not controlled by epilepsy medicines
Having sudden and frequent changes to epilepsy medicines
Being a young adult (in particular male)
Having sleep seizures
Having seizures when alone
Drinking large amounts of alcohol
Ways to reduce the risks of SUDEP if you have epilepsy

Seizure control
The most effective way to reduce the risk of SUDEP is to have as few seizures as possible. If your seizures are not controlled, here are some ways that you can manage your epilepsy, to try and reduce them.

Always take your epilepsy medicines as prescribed.
Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first.
Make sure that you never run out of your epilepsy medicines.
Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines.
If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery.
Keep a diary of your seizures. This can help doctors when they are considering the best treatment for you. It may also help you to see if there is a pattern to your seizures, or anything that triggers your seizures.
Avoid situations which may trigger your seizures. Common triggers include forgetting to take epilepsy medicines, lack of sleep, stress and too much alcohol.
If your epilepsy is very difficult to control, ask your specialist if you could be referred to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.
Epilepsy Action has more information about epilepsy medicines, surgery, seizure diaries and seizure triggers.

Other ways to reduce risk

If your seizures happen at night, consider using a bed alarm, which can alert another person if you have a seizure. This will enable the person to help you. For example, they can put you in the recovery position or call for an ambulance, if necessary. (Be aware that bed alarms are not always perfect. They may sometimes miss seizures or go off without a reason. And it’s important to know that there is no proof that bed alarms reduce the risk of SUDEP.)
For information about alarms and manufacturers, you can contact Disabled Living Foundation’s equipment helpline. They provide information about suppliers of specialist equipment to help with everyday living.

Tel: 0300 999 0004 (calls charged at local rate)
Textphone: 020 7432 8009 (calls charged at standard rate)
Email: advice@dlf.org.uk

The Disabled Living Foundation's website is called Living made Easy.

Telecare (alarms linked to a help centre)
Website: livingmadeeasy.org.uk/telecare

Bed alarms
Website: livingmadeeasy.org.uk/bedroom

Tell people about your epilepsy and let them know how they can help you if you have a seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of your epilepsy.
Having seizures when you are alone is a risk factor for SUDEP. You may wish to bear this in mind when you are making plans for where you live and what you do. For example, you may choose to live with other people.
Some people who have sleep seizures use anti-suffocation pillows. These may be safer than ordinary pillows, although we don’t have any research that proves this. If you think an anti-suffocation pillow would help you, please talk to your epilepsy nurse or epilepsy specialist. They will help you to decide whether an anti-suffocation pillow would be a good idea for you. 
For details of where you can buy anti-suffocation pillows, contact Epilepsy Action.
Epilepsy Action has more information about safety and epilepsy, identity jewellery and epilepsy awareness cards.

Ways to reduce the risks of SUDEP for someone who is having a seizure

You may be with someone when they have a seizure which causes them to lose consciousness. Here are some things you can do to help them recover. Your actions may also reduce the risks of SUDEP.

Remember ACTION for tonic-clonic seizures:

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury
C Cushion
Cushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I Identity
Look for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O Over
Once the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N Never
Never restrain the person, put something in their mouth or try to give them food or drink
The recovery position

The recovery position

Call for an ambulance if...

You know it is the person’s first seizure, or
The seizure continues for more than five minutes, or
One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
The person is injured during the seizure, or
You believe the person needs urgent medical attention
Further information about SUDEP

SUDEP Action

SUDEP Action offers support and information for people affected by SUDEP and other bereavements related to epilepsy. They also promote research into the causes of SUDEP.
Tel: 01235 772 852
Website: www.sudep.org

This information was written by Epilepsy Action’s advice and information team with guidance and input from people living with epilepsy and medical experts.

If you would like to see this information with references, visit the Advice and Information references section of our website. See SUDEP.

Code: F006.03

Epilepsy Action would like to thank Dr Lina Nashef, consultant neurologist at Kings College Hospital, UK for her contribution to this information.

Dr Lina Nashef has no conflict of interest to declare.