Starting pip

[englishmumof2]

So I've got the forms and I'm off to cab tomorrow... Feel so ill at the moment fatigue pain sickness headaches eyes throbbibg in pain. But I look OK... Well I look exhausted. Anyone recently applied for Pip for fnd in the UK? Thanks in advance

[davlyn]

hi englishmumof2

my name is David i'm 58 and have had FND for approx. 7 years which seems to be getting worse. I am waiting for an appt to see a consultant to see if I have MS as a lot of my symptoms are similar to MS, anyway yes I have applied for PIP and I was awarded the mobility part of PIP so it is possible, I had to attend an assessment which entailed sitting with a lady assessor who questioned me basically the same questions that the PIP form asked me, I do spend most of my outside time in a wheelchair and when I had the assessment I didn't get out of it. she seemed very nice and didn't force me to get out of it as I was clearly In distress, I went with my wife who came in with me, as far as I remember the place I went to was a physiotherapy clinic, I don't know if there is any relevance to the assessment being a physio clinic. I got the high mobility awarded do to not being able to walk far but as I can cope with all personal care myself I got no award for that. I got it awarded for just over 2 years but about 3 months ago I got a form asking if there was any changes it was basically just a tick box which was quite painless and since I returned it I have heard no more. Any way best of luck.

Dave

[thinkin]

Hi,

They are total *&^&%@!@'s. If you have fluctuating symptoms they will treat you at your best days and not like you are much of the time. You will suffer a lot with "well you look alright to me". Sad loss to the NHS aren't they? It takes many tests and doctors to diagnose you and sometimes years, but they can see with just looking.

Don't be over positive and think of good days. Think of your worse days. Good days are just occasional bonuses. If you suffer from fatigue don't go to them for assessment - it's dangerous to push yourself and it takes hours to to and days to recover from. Get them to come to you - they will see your ability to leave the house as proof you can do it and don't have significant disability.

The assessments assume that if you can do one part of a task you can do all of it, so think before being too positive. Their "walking assessment" literally is three steps and you don't have to be steady, or not struggle or need aids to pass that. And if you can walk 3 steps you can walk any distance in their eyes - it reminds me of the Royal Navy Engineers ad that's running at the moment "If you can fix a skate board...". They tend to see the distances you say you walk as far longer than they actually are you need your own evidence.

They don't understand FND to the point of wilful ignorance. You can provide them with evidence, but they just go off what they can see with their own eyes, but do it anyway. And those are biased eyes. They have targets to meet and will jump on any little thing to refuse you. They like to count daily living aids for points so count up every one you have. Buy a few more. I know we like to struggle on without stuff, we are by nature very stubborn people, but when it comes to PIP you are going to have to give in. They will take the lack of living aids of evidence you are not significantly disabled, rather than too proud.

If they need to they will time the 6 months disability before you can apply from the phone call you make to order the form, so you have to have been in your present state for at least 6 months and it helps to have been seen by a medical professional who has seen you or you won't have any evidence to prove it. Even in my case they stretched the timings to even before that and used the fact that my neurologist discharged me when he moved hospital to refuse me and didn't tell me until after 2 hours of interrogation at tribunal. Why don't they tell people in the first instance - because then you would be able to prepare with the right evidence.

Pain wise they won't believe you are in significant pain unless you take strong opiates on a regular basis. Even though they are not recommended for FND. Unfortunately it's hard to prove you are in pain. You'll need witness statements and statements off your neurologist.

You will need support. The CAB may say they will be there for you, but they often are over run. If you look ok you'll be right down the list. Look for help from your local disability hub too. You need to be in a strong place psychologically.

There's advocacy on the FND hope site and links to other sites. You'll have to google how they assess you. They try to keep that information from the internet. When people find out they change the rules.

Sorry that you've picked a rather cruel and uncaring time to be disabled. If you read this and think it can't be as bad as that, please think again. I hope you are ready for a fight.

[englishmumof2 in reply to thinkin]

Hi guys... Thanks for the info. I'm. Not sure I will apply. My neurologist and psyconeurokgisy said to apply. But I'm not sure I could cope with being called a liar. I got a job just to have a reason to leave the house as I was getting depressed and didn't want to carry on. So maybe I will forget it. Just going through dla for my eldest adhd, hearing loss, suicide, depression not sure I can take any extra stress 😑

[thinkin in reply to englishmumof2]

Hi.

Sorry I didn't mean to put you off altogether. Maybe when you have got over one hurdle consider it. There is support out there. Don't overwhelm yourself. It would be too much to add to your other problems.

I suppose I'm playing into the government's hands spreading the word about how utterly degrading they have made the whole process. You'll have a hard enough time of it with your son.

I had an utterly different experience to Dave. I suppose as a northerner living in the southeast of England where there is a great deal of prejudice against us then that will taint people's view of me. They have demonised us so much. They assume a great deal about me. Even when I developed gastritis the consultant told me to stop shovelling my food down, learn to chew it and stop drinking so much beer! None of those I do and I wasn't even obese or anything. It made me so paranoid that I was eating so slowly that people were passing comment on it.

The points system will change regularly so keep checking. I know they are supposed to include those with mental health issues - though your FND is not a mental health issue in itself it does cause nasty mood problems - as I know so well. When someone finds a way through by battling all the way up to the high courts they just pass a new law to block it happening again. Once were out of the EU god alone knows what will happen to us.

[englishmumof2 in reply to thinkin]

Thanks thinkin. I have finished battling 3 years for EHCP and school placement for my son so I was hoping to. Try and get some help for me. Had to change car as can't use left leg for anything other than walking a I have no control to push my leg. I've mad a lost of my problems but maybe I'm selfish trying to get disability as I do work. It was when my team said there's nothing we can to do help. Unless you get worse.... That broke me... No help for pain, confusion, foot leg freezing to the ground. No help for the night time tics/serzures or day time tremors... No help writing understanding, no help to remember what's happened today or yesterday just get worse and we'll see if we can help... And I'm. Under Prof Edwards in London so I'm lucky to be undar his team.. Problem. I've always, even a positive person but I'm feel. G really low at the moment sleeping 16 - 20 hrs a day no family around to help with kids or house or dog. But that's OK lots of people in this position or worse. In gs t this summer after a family fall out I even walked into the sea hoping to. Just keep walking and not having to come back.... Thing is life sticks and the tide was out so I got as far as my thighs and realised it was going to. Take miles of walking to do my self in. Plus it wouldn't be ki. D to who found me and everyone's holiday memory would be remember that woman's body they found.... So suicide wasn't really a good idea.. So kicked myself up my buty and carry on.. And no I haven't told my gp. Even saw Prof Edwards avdsaud hey I'm. Fine I'm working 2.5 hrs a day with special nerds child which I love so yes I'm good. Inside I wanted to cry and say it suck. I'm constantly in pain, exhausted, no idea, what i e done I want to do things with kids but I do. And I'm out of action for dais or I don't and kids miss out. Now breathing issues on highest drugs now so it's a bit better but breathing problems increases fatigue. Foot spasms which bend my toes backwards and I can't stop it.... Any way. Could be worse I'm. Not in a wheel. Chair or in a warctirn cou try so I'll be fine. Hide my feelings deal with e earthing and look fine..... Sorry just feel. G sorry for myself tidsy

... It will pass time to put on smiley face and carry on 😁🤣😅😂😀

Ps I'm in southeast too..

[thinkin in reply to englishmumof2]

Hi,

Bless you, you are not being selfish applying for PIP. In an ideal world we would have a system that enables us, rather than the current one which thinks kicking the crutches from under a person will somehow motivate them. There's always this mythical person out there who has it worse than you so you shouldn't feel sorry for yourself. This one person who can't move a limb, racked with pain and fitting constantly. That's not the point though for social care is it? It should take everyone as an individual and promote their well being and inclusion in society. No one goes to the police and accepts them saying "we won't investigate your rape, you should be grateful you weren't raped and murdered". But we beat ourselves up when we need care. There's always going to be someone worse off, that should not exclude us from being cared for or being given financial help.

I'm under Prof Edwards too. Not that they can offer me much. I got to the top of the list for the physio and then they said, we don't do it for people with fatigue - why he referred me I don't know. I think he likes to be helpful and positive. I was a bit mad but channelled it and got talk with Glen Neilson the research physio. I've not managed to go back because of the fatigue.

Have you had a go at doing anything from the FND Hope website? I found that the vitamin B6, B12, and the rest of the B vitamins helped. B6 had the most impact. I used to walk and become lower and lower in mood the more I walked. I used to get suicidal every time I caught a minor infection. B6 put a stop to that. Not overnight. I know what helps me doesn't necessarily help others, but there is a lot to the vitamin side. B12 and 6 deficiencies are found in high proportions in CFS and people with mental health issues as well. There's good arguments for taking all the B complex as they work together. Vitamin D also helps and sunshine helps make serotonin. If you get cramps where you lock try magnesium oil topically. I've found it's great for pain. It's similar in nature to calcium so it's good for joint pains and as a muscle relaxant it's great for cramp. It's worth a try it's not expensive and you can add it to your other medications without problems. It's even good (topically) for period cramps. You can buy on amazon. I was very sceptical about the reviews, but I was wrong.

I hope this may help. You are not alone. xx

[englishmumof2 in reply to thinkin]

Cheers.... I will try the meds you recommend. Prof Edwards bless I think he'd like to. Help as you say but there's only so much he can do... Even though I'm fatigued I love my job. Little girl with rare disorder keeps me balanced and many other kids with crap home life. So b6 b12 and magnesium oli... I'll let you know how it's goes 😁😀

[DNE92 Moderator FND Hope UK]

Hi Sorry bu I cannot find my glasses so my reply could be all over the place 🤩. The fact that you were given the form is part of the fist hurdle. Many here had said it - fill it in describing your worst day. There is an organisation called Support 4Justice and for £4 99 can send you out templates of what to saw. You can also advise the Accessor in good time if you wish to record the “interview” I’d go for that once since I went into the assessment and left being wheeled by my husband, the Accessory and a random receptions to my car. All 3 plus a walking by man was asked to help- to get me into our car. good my PIP but NOT the mobility issue. It’s plain crazy.

Plus APPEAL an unsatisfactory result. You’d be amazed at how many people get their allowance on appeal.

Good luck with the form and for a good outcome.

Cheers

Lou

[thinkin in reply to DNE92]

Hi,

Actually the appeal process had been made tougher since the government found that the judges were reversing their decisions. They have set ups like court rooms and cameras on you all the time and they are every noticeable. You are not allowed to record anything at tribunal and there's threatening signs on the walls. You have to go though metal detectors and security. There's now a "Disability specialist" who has the power over the judge.

From what used to be an informal chat around a table has changed to over two hours of interrogation, even if you sent it as written information because your concentration is poor and you've told them that. They won't ask the relevant information that caused them to reject your application at the beginning, they leave that until the very end. I was so pickled by the end of it and they could see I was so tired and couldn't string a sentence together. I couldn't remember that the why Prof Edwards had discharged me at one point - it was because he moved hospital - it was enough for them to reject my claims because it was seen as I was well at that point despite other evidence including the evidence of their own eyes. To hear "we can see you desperately need help, but we are not going to give it to you" is heart breaking. I wish I'd been warned so I could prepare. Now I don't even have a blue badge despite being in a wheelchair because the thought of applying gives me panic attacks.

I don't want to be negative. I want people to be prepared. I don't want others being left as I was curled up in a ball, unable to get out of bed, with no chance of getting any help and ready to take every tablet I had to end my misery. Yes fight, but prepare people correctly. Everything the CAB said about appeal was so utterly wrong.