PIP - DWP and Awkward

He was on Epilim 800 in the morning and the same in the evening but they are changing his medication now as they feel that it is ineffective because of the amount of fits he still has. He has around four to five a week dependng on what else is going on in his life. They have now started him on something called lamotrigine which he is reluctant to take because of the possible side effect of getting a severe rash. So they are introducing this slowly and reducing the eplilim. With the PIP application the thing that annoyed us the most was the fact that the people dealing with his case in DWP including the health person they sent out had no idea about epilepsy and the way that it affects people's life or that there are different types of epilepsy!

My partner takes epilim and zonagran and they want to add lamotrigine, because of the uncontrolled seizures and severe migraines. Also take  propranolol for the heart and anxiety, and sertraline for epilim the dosage is 2000 a day  and 500 mg for zonagran twice a day and the dla just the middle and low even with a 2 professor one for migraines and the other one for uncontrolled epilepsy and another professor dealing with the heart staying that the person can die anytime from the aneurysm and the heart but we didn't want to take it further as sometimes it's not worth getting headaches from the dwp . But you got a case good luck ,try the epilepsy forum some ppl they don't even have ESA .and a lot of epileptic ppl don't have pip or dla even uncontrolled epilepsy but he ho it's life and we should keep positive and a very happy new year 

My partner is on sertraline also. He was diagnosed with epilepsy five years ago. There is a family history and they think the anti-depressants he was taking at the time triggered the epilepsy. It's a shame because things were starting to get on track with the anxiety and depression and now the anxiety is worse because he is embarrassed and fearful of having a fit outside. Doesn;t help that he has broken his leg this time! We would have been happy with keeping the middle rate care and low mobility with DLA but we had to transfer over to PIP and the DWP stopped the benefit. We only went to tribunal thinking we could get what we had previously but they gave him more points in court and although it was stressful we felt very lucky leaving the courthouse. However the DWP insist as usual on not making things as simple as they could be and are now dragging the whole process out. I keep telling my partner to try and forget about it and wait it out but it's things like this that stress him out. We don't intend to claim for ESA - he was working part-time with a very understanding employer before he broke his leg in April but has been unable to work since then as the leg is still healing and it probably won't be totally healed for another 6 months - possibly more if he has to have another operation which they are considering. From what I understand I am working too many hours and my wages are too high for him to claim ESA anyway. Thank you very much for your advice. I hope things get better for your partner. Happy New Year to you too.

Hi,

I take 2,000mg of Sodium Valproate (Epilim) a day, any higher then my medication would be changed. This medication doesn't actually make bones any weaker. I have been on it for over 30 years!!! However, Epilim does affect the bone matter, as I found out. What happens is a normal persons bones will bend to a degree, this is normal - but being on Sodium Valproate for a long period of time does cause the bone structure to become not so durable, hence it becomes stronger but because it is no longer as durable, it breaks with more force.

The only reason I know this is because my teeth started becoming more brittle, over time fiillings dropped out - and I had a lot of root treatment done, this led to many teeth just disintegrating. Now teeth are not the same type of bone structure as the skeletal system, many people will say it is exactly the same. I went through hell having some of my teeth extracted, because my jaw bone was no longer durable, and my teeth were brittle. On four teeth I had to have the jaw bone drilled, to release the roots of old teeth, I wouldn't wish the pain and agony I went through. I am so glad now I have dentures no more toothache or dry sockets (dry socket is where after a tooth is extracted, the clot does not form correctly, hence falls out, exposing the jaw bone! The pain is about ten times worse than having toothache). Dry socket is more likely to affect women over the age of 35, with men it is supposed to be less likely to happen.

Now, for Epilepsy, this I have suffered for so many years but it was an underlying nerve disorder that caused it. I have grand mals and peti mals, but two years ago while having BoTox injections for Dystonia, I had a seizure in the waiting room, the Neurologist that just seen me ordered an EEG to be done ASAP via a portable EEG machine. The outcome was exactly what he had thought, it was not an Epileptic Seizure of any kind, eventhough to everyone around me assumed it was. The Neurologist gave me a piece of paper to contact a Dr Jon Stone a Consultant Neurologist and well known. The EEG showed no electrical activity in the brain whatsoever, this meant one thing the seizure was in fact a Functional Episode (now, I was stumped because there are 28 variations of this type of seizure).

So now, not only do I suffer from Epilepsy (both Grand Mal and Peti Mal) but also Functional Episodes. None of which, at the moment are under control, and being rushed to hospital in Ambulances which costs the NHS £250 a time, which I feel guilty for, even though I have no control over when they occur. And of course at this time of year, actually seeing a doctor in A&E can be 4 hours or more. It does not take very long once you are out of a seizure to come around, but with me my blood pressure is usually low, but this is down to what I eat during the day, especially a banana at breakfast time.

My main triggers for a seizure is pain and pleurisy (especially at this time of year!), but there are numerous other triggers like party lights, flashing lights are okay, but if LED laser lights are going then that causes me to have a nose bleed, which is a sign of a seizure. So now I don't go to parties, or if I do I ask what sort of lighting is going to be used - it probably sounds rude, but I would rather not cause a problem at someones party.

DWP December 2015 Update

As for the DWP, you have to realise that they are currently running on very low staff, this includes MAXIMUS as well, all of which is causing delays on numerous claims. Some DLA to PIP claims are not being changed over until 2018 at the latest (it was meant to be by 2017). To lower the back log, some "indefinite" cases from DLA to PIP are now being processed with no "face-to-face" interviews. The chance of this happening depends on how the PIP AWARD Application Form is filled in, rushing it will not get you anywhere, take your time - it states 28 days to return the form, but if you are awaiting paperwork you can ask for a 14 day extension period from the DWP, you must state the reason why and provide the evidence with the main form. What you place on the form needs to be precise and easy to understand, any supporting letters from Consultants should be included along with your application.

A word of advice regarding the PIP Application, do not feel you have to rush it, it is not a race - it is to determine your state of health, therefore the more you tell them, the higher the chance of it being awarded. Do not answer just Yes or No, actually explain why you entered Yes or No, and any other space needed to extend the explanation should be added to, on separate sheets of A4 paper, securely attached to your application and make sure your National Insurance Number is included on each sheet. The last time I applied for a higher level of DLA Care from middle to high rate, sent them the form with 6 additional A4 sheets attached, explaining everything in detail. 5 months later it was awarded, I was notified that it was taking longer to process due to the amount of medical information that was included. The DWP did ask why we had not asked for an increase before, because of all the problems during the night.

Regards,

Les.

 

They sure are   They don't realise the extra stress that they put us through

They really are a law unto themselves. What irritated me more than anything is they had 30 days to ask for the statement of reasons and they waited untik day 29/30 to do it. I had phoned them a couple of times in between and they kept saying they didn't know and that it wa still with the decision maker etc. I would expect by now that they would be able to tell within a few days if they are going to do it but they use delay tactics to stretch it out as much as they can. They have done the same thing with the next step of asking whether or not they can appeal.  The way the decision maker wrote about my partner was so stereotypical going on about his smoking etc. They really don;t see claiments as people anymore - just numbers!

I don't think they care about the extra stress we are put through - they just label everybody scroungers. This image of people claiming benefits boosted by the media. If they actually saw as himan beings and had an understanding of the illnesses that people face they wouldn't treat us this way.

I don't mind them having the same rights to appeal - that's the law and that's fine. As you said we would have the same right if the decision had gone against us. 

I think I am just peeved about the way they handle the time and leaving everything till last minute - there is no need! 

How come the DWP didn;t have to accept the judges decision - I thought once the tribunal had been won and they couldn't appeal they had to pay you?

Not so it seems. In my case I had to 'win' in order for a small amount of overpaid Council Tax Benefit that could not be collected.

The 'win' was to have a decision about a benefit that was made in 2004 be confirmed that it was in fact an 'official error' on the part of the DWP.

The District Judge read the evidence that I presented and issued his ruling that the '2004 decision was to be treated as an official error'.

Hence why I accept that I owed the Council Tax, they could not force me to repay it.

However, the DWP say that as they were not party to the hearing (they were invited by the DJ on three separate occasions to come along) they would not recognise the decision made by the Judge. 

I do believe that this isn't because they don't like the jugement, it's just that with the 'offical error' tag the 2004 decision can be revised instead of it being superceeded. There is over £20,000 of unpaid benefit that they admit they owe me riding on the DWP accepting the judgement. 

The whole case was based  around  the unpaid benefit. The case against the council was an attempt by me to get round the late appeal situation which had already been refused by the DWP.

This case has been going on for 4 years. I had got as far as having the DWP accept in writing that the original 2004 decision was flawed and that the benefit should be paid to me. Their letter of November 2011 actually states that the award had been revised from March 2011 indefinitely to 'from February 2004 indefinitely'.

Unfortunately whilst the DWP are ready to write a cheque for over £20,000 one thing is stopping them. I never appealed against the 2004 decision within the recognised time frame of 13 months. Without the appeal, there is no legal basis for them to issue the cheque even though they agree I should have it unless it could be shown that the 2004 decision was in fact an offical error (anytime revision).

The £20,000 is made up of Industrial Injuries Disablement Benefit at approx £60 a week from Feb 2004 to March 2011 + interest.

Sounds like a very stressful time for you.

Hoping that things work out for you.

Thanks for your advice. I don't think it's fair that they are allowed to hand things in late - if there is a deadline then that's the one they should be aiming for. Uncertainty is a key factor for my partner anxiety and the more uncertain things are the more anxious and stressed he get's and then the epilepsy get's worse. 

I kepp telling him to try and calm down and try not to think about it - easier said than done I guess.

Hopefully we won't reach 2nd tier but will keep legal aid in mind if we do.

Hope you have a Happy New Year.

Hi Ogio,

The DWP is covered in many ways, and taking them on is like you against the Government, so your chances are low. There is many Acts and Laws which to most companies would be affected, but you always find in the small print that there is EXEMPTION when it comes to the DWP.

I should know because I have had problems in the past with the DWP, and even though I found loopholes, they would have cost me to get them in place. So, the DWP won with me... you need money to take them on, and because it's the Government your chances are slim.

Regards,

Les.

Put simply my experiences of the DWP are such that I would class everything they do as way below sub standard. 

When I first started my career back in the early 60's, I joined what was then the Inspector of Taxes. It was a rule that anything that we did was to apply the law in a fair, open and non-judgemental way. In fact there were some rules that I flouted along with my colleagues on the basis that they were too prejudicial to the needs of the taxpayer. The public had access to a direct telephone line to my desk, And I always signed my letters as 'your obedient servant'.

I and all of my colleagues were the link between what the politicians demanded in the laws that they passed and the public at large. We were totally devoid of any political persuasion (in fact I was a fully paid up member of the Communist Party and area rep for the Inland Revenue Staff Federation (union)!!)

I am saddened when I see how civil servants today act towards the public. I finished off my career back in the civil service just before the financial crash. When we were told to adhere to targets, to do twice the work in the same time for less pay.I refused and demanded from the Director General his opinion on how I could do my job properly in half the time they expected. Never did get an answer and I left before I could throw more crap at the Secretary of State in charge of my department.

   

Hi Ogio

I fully understand the anxiety your partner (& you're good self)) are undergoing and it is wrong. However, keep strong and focus and fingers crossed you will get some good news very soon.

Have a Prosperous New Year