Tag Archives: DLA

epilepsy, Epilepsy in Suffolk, PIP (ex-DLA), Uncategorized

Epilepsy and DLA: the application

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Many people end up at this blog having concerns about Epilepsy and DLA.

The underlying problem is that many people (medical professionals  included) have little or no understanding of how many different issues are encountered with epilepsy and what an impact it can have on trying to lead a ‘normal’ life. Would that it was just an occasional tonic clonic seizure, eh?

So for those with epilepsy, struggling to fill in a DLA form , and those who administer the DLA and haven’t realised how little they might know about epilepsy, here are some tips:

* Only claim if you actually need it.  DLA isn’t a reward for not being well – it is to help someone with a disability afford a life that mirrors more closely that of other people without that disability.  I have very mild epilepsy, my daughter has it very badly. If your life is pretty much the same as other peoples (like mine is) you probably aren’t eligible for DLA – but then you (I) don’t actually need it. There are plenty of people who really really do!

*The effects of epilepsy vary tremendously from person to person. Don’t think that the officials who look at the form will know what you are talking about: spell everything out. If the form doesn’t have a place for a problem, add it at the end.

* Remember that while most people know nothing about epilepsy, they carry a stereotype in their head (generally an actor acting a tonic clonic seizure  in a film or on tv). You must make sure that your application spells out the actuality as it is for you.

* ALWAYS maintain a full seizure chart  for each year, and keep them afterwards.  (I download a day by day year planner and fill it in online, with different colours and symbols for various seizures, interventions and outcomes. I note all changes of meds too. This means I can always print off a totally up-to-date one)  Use the chart to mark  not only seizures, but also the results (broken teeth, hospital admissions, episodes of status, period in intensive care). I have ten years worth now recording the appalling conditions in which my poor child has lived –  and wave them around at the slightest provocation.  I hand out updated ones at every doctors’ appointment so it appears on all the medical notes too. No-one can say that the information isn’t there!

* The DLA form doesn’t apply very accurately to Epilepsy. Spell out the effects of the epilepsy. For example:  Yes you can walk without difficulty for miles – unless you are having or recovering  from a seizure. However when you are walking you might suffer from an absence – crossing a road for example, or suffer a partial complex seizure and start behaving in a way that looks strange and might be dangerous.   Hazards are individual. Don’t forget to point them out if they exist.  Many people really won’t have any idea of the range of problems e brings with it..

* Estimate the time it takes to get over the effects of a seizure as well as the seizure – or all the different types of seizure you might have –  and the amount of looking after/out for that you require from others to try and ensure your safety.  If you’re ok in 5 mins, take two hours, or are not good for a day after a tonic clonic, make sure you point this out. If you fight to get up, but generally fall, mention it. If you have ten minute seizures at night, but this requires others to listen out for them, and  to check up on you during and for hours afterwards, make sure this is fully explained. If you can’t have a bath without an open door and someone in the house, or a shower without alerting people  to keep an ear out, or cannot go to a public toilet without making preparations for rescue if necessary, do point it out.  Many people would simply not realise this might be a problem.

*Save every piece of paperwork you are given because you can use them for supporting evidence: and my gosh, bad epilepsy gets you a lot of pieces of paper.  Prescriptions, appointments, letters from social workers/schools/ medical professionals etc , those never-ending bills for emergency dental work, discharge letters from hospital etc.

* Where they ask for names and contact details of all the professionals you have seen in connections with your epilepsy, make sure it really is all of them. We usually end up with eight or ten – and not by any means all medical. Take the time to track down accurate contact details: its worth it.When contacted, these are thye people who can tell it as it is!

* There can be awful and unexpected consequences of epilepsy . If you end up in a&e with broken bones and blackened eyes and a neck  brace because you fell;  or  in custody because your seizure was mistaken for the effects of drink or drugs; or end up lost and wandering because you have ‘missed’ some time, or even (god forbid) get attacked for looking odd, or behaving strangely, remember to photocopy the paperwork. It supports your statement -and makes people understand the range of dangers e brings with it.

* The same applies if you become aggressive or suicidal or incoherent with some meds. It is a tremendous inconvenience to put it mildly.

*Are your drugs time-sensitive? I have only recently realised this varies from person to person. Make sure you write down how many hours or days you can get away with after missing a dose/doses. I am not convinced that many people realise the RANGE of problems that can arise from missing meds.

* Similarly, if you need reminding, or pushing to  take your drugs, come clean. It adds to your proiblems

* Photocopy every page of your form  and every attachment and put it away for the future. If your claim is contested, and you think this is not reasonable,  you can then look and see if you have not been as clear as you thought

NB DLA is current until 2013/14. After this we will have to see how the new PIP support pans out. Currently I’m not believing either the “snatching the lifeblood from disabled children” brigade OR the “its safe in our hands” lot. Watch this space

Epilepsy in Suffolk, Uncategorized, young people

DLA: potential discrimination against people with epilepsy

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Rt Hon David Cameron
Prime Minister
10 Downing Street,
London SW1A 2AA                                                                  14 February 2011

Dear Mr Cameron

Re: second reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) (Bill 112)

I’ve already written to you personally, urging you to find time for the second reading of the Ten Minute Rule Bill on Epilepsy and Related Conditions (Education and Health Services) (Bill 112) which is scheduled for 4 March 2011.

In my letter I told you about the double whammy suffered by my teenage daughter and many others like her – balancing the effects of severe and hard-to-control epilepsy on the one hand with poorly integrated non-strategically organised services in health, education, and social care on the other – with everyone playing pass the parcel just as hard as ever they can!

I’m now writing to you in my capacity as county councillor, urging you on behalf of the people of Suffolk to make time for this Bill.  As proof that the Bill is needed, I want to highlight a fault in the processes for managing Disability Living Allowance, a fault which provides potential discrimination against people with epilepsy.

Many people with severe epilepsy have no cognitive deficit, but are severely hampered by the effects of medication/seizures. Our teenage daughter is one of these.   On turning 16 , DLA starts to be paid directly to the patient, because the DWP (very properly) considers that the recipient should be negotiating their own services unless mentally incapable. This is admirable in theory!

Unfortunately,  the intractable nature of the epilepsy and the strength of the medicines used to attempt to control it, often have a bad effect on one’s ability to remember, understand and plan things . This is true of my daughter – it is also true of every other person who is significantly disabled by epilepsy.

Because of the DWP’s assumption of independence, in our case it took over a year for any of us to discover that the DWP had cancelled DLA payments to my daughter and that the expenses that the DLA was supposed to be funding for her (personal care, transport costs etc) were in fact being paid for out of her own pocket-money and savings. We supported her to ring and query this – whereupon she was told she had she had failed to fill in a form which had been sent out to her and that she must now reapply (with the clear implication that none of the intervening year’s DLA would be paid to her, despite clear evidence of her significant disability during this period.)

DLA recipients with epilepsy suffer from a condition that severely affects their ability to concentrate, remember, organize and plan. This is the very reason they are receiving DLA. How can this supposedly disability-aware government agency take no account of the very disability from which recipients are suffering when deciding the methods by which the benefit is managed, renewed and in this case, it seems, terminated?

It is clear that if epilepsy is to be supported by state payments like DLA (and as a carer of someone with intractable epilepsy I can confirm just how many adjustments are needed to support even half-way normal living arrangements) the state’s agencies need to recognise some of the limitations of this condition. The DLA paperwork takes account of a recipient who may be hesitent about reading and writing, or who needs help in filling in the forms, but it does not take account of the degree of mental confusion that can accompany regular epileptic seizures and/or heavy medication

If the state insists on dealing directly with DLA recipients from the age of 16, it is clearly discriminatory to fail to ensure that its methods of communication are dealing fairly with recipients and also taking account of ALL effects of disability.   DLA is not pocket money. It is intended to help a disabled person to live as close an approximation to a normal life as possible. Once again people with epilepsy suffer more than others because of the unrecognized nature of their condition

The specific problems caused by epilepsy have been poorly understood by central government in the past, particularly in regard to the provision of educational, medical and social support. Fortunately, the current more enlightened government is finally showing signs of greater understanding. It is social (and economic!) madness to prevent people with epilepsy from contributing to society as fully as they could do. In writing to you I hope that this example of the State’s clearly well-intended yet obviously ineffective interaction with epilepsy will encourage you to make time for the Bill and will strengthen the support that I know you already feel for these measures.

Yours faithfully

Caroline Page

copied to:

Epilepsy Action
NCYPE
National Society for Epilepsy/ Epilepsy Society

Chinese saying of the day:

小事聪明大事糊涂 (xiǎo​shì cōng​ming​ dà​shì​ hú​tu )

clever in trifles but muddled when it comes to huge events