Monthly Archives: February 2012

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

Carers, Social care, Your councillor

Family carers need recognition as workers

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Although local concerns about the closure of the Suffolk Respite charity are timely, we need to recognise that the problems family carers face are not primarily those of ‘frontline cuts’. They are the outcome of years – decades – of total neglect by  past governments.  Carers need more than charity – they need recognition as workers. I speak as a 24/7 fulltime carer  since the year 2000.

6.4million unpaid family carers in the UK save the UK economy £140bn every year. And for 24/7 care (a 168 hour week), they get a Carers Allowance of £55pw only if they are unable to work on top! Most carers struggle with dreadful daily conflicts between work and care, and a million have had to give up or reduce their hours, losing an average of £11,000 a year. There’s a wolf at every carer’s door – and over 4 in 10 say caring has pushed them into the red, with 47% being made ill by money worries. Their worries come, not only from lost earnings, but  because they face bills for special equipment, foods, medicines, transport, heating.

Its a big price to pay for love. Yet carers don’t expect to be thought of as noble: we do it in many cases because  that is the hand that we and the person we love and care for have been dealt.  There are no other options, or options that do not accord with common humanity.

We cannot always manage to be the angels we are not, so it isn’t surprising that we would rather be thought of as the workers we are. Yet New Labour, Old Labour, wet and dry Tories – no government has given a monkeys for the plight of our large but clearly politically insignificant group. For all the care past governments have had for carers ,we might as well have been a rural bus route!

On Nov 30th (Strike Day)I and the person I care for crossed a picket line for an essential (life-supporting) appointment. I asked the Unison reps why they were not striking to improve the lot of family carers.   As I pointed out to them : “Our terms and conditions include no occupational pension, no time off, no holiday, no sickness pay or cover, Health & Safety training and we have no recourse to the European Time Directive”,.

“We can’t represent you because you don’t work,” I was told. “But we care an awful lot for your plight..”

Right.

I have since been onto Unison to ask whether they would consider representing 6.4million of the hardest workers in the land to improve dire living conditions that a public-sector union should be breaking its heart over. So far, no response.

This is a slightly amended version of my letter to the EADT, 6/02/2012

Gritting, Helping the community, Pedestrians and Walkers, Roads, Volunteers, Woodbridge, Your councillor

Clearing pavements: True Grit!

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OK, folks. Snowtime has finally arrived.

When the weather  is like it is now, with thick snow covering the pavements and turning to icy lumps, please don’t wait for ‘someone to do something.’  Get out your shovels and clear any bits of pavement you know will be dangerous – particularly for your elderly neighbours – before the snow becomes ice. I’ve made sure there’s a grit bin anywhere anyone has asked for one (funded from my Locality budget), so grit as well as shovel and there won’t be any extra broken hips and wrists this year.

Down California today, the snow was five or six inches deep. Clearing a path down one side will hopefully help people -particularly the elderly - get out and about safe

This morning I spent four hours shovelling and gritting a path up California, across the Ipswich Road and down the Ipswich Road footway to the John Grose garage (my pedometer made this 3.5km of paths shovelled).  Huge thanks is due to the three volunteers who helped me. By tomorrow morning these routes would have been ice.

Oh, and by the way – don’t listen to anyone telling you they can’t clear and grit  because they are  are ‘afraid of being sued’. This is a common story but I have yet to discover anyone who has ever been sued!

A  lawyer tells me that anyone ungrateful enough to sue someone who cleared the footway would have to prove they intended to harm people by clearing the snow!

If you are very anxious read Directgov’s formal advice here, but don’t make an excuse to stop yourself helping others. If you are fit enough to help people who are not, please do so.

(Update: in fact today, Monday, a man waiting at the bus stop by the Duke of York kindly used my spare spade to help clear the bus stop area.  The only thing that stops people helping out is a lack of will!)

Remember, one day we will be the ones relying on other people to help us out a bit.