DLA help

[Soxy]

Hi,

I've been advised to make a claim for DLA based on the fact that I am still recovering from Men B and Scepticemia and have a variety of other health problems. I haven't recieved the form yet, but have been advised that it is very long and that I should get as much help as possible to complete it.

Does anyone have any advice about this - where to get help/support in completing etc..

I'm a year on since being taken seriously ill with M (B) and I can honestly say it has been the hardest year ever. I was offered no follow up from the hospital and have now been advised by my GP that this should've happened, but because I was on a Cardiology ward they would not have any specialist knowledge regarding M(B) and after effects. I think this is disgusting. It has taken me over a year to get people to listen to me, and I am now being referred to see a Neurologist.

Anyone out there recovering form M (any type) don't give up - keep telling people you need help and support. I admit it is quite wearing and frustrating, but I eventually have people listening and on my side (including the Meningitis Trust). As someone said to me yesterday - There is light at the end of the tunnel - it's just a very long way to get there. I had the worst week ever last week, so I am trying to remain positive and whilst I can only see a glimmer of light, I hope that with time it will get brighter and brighter (fingers, toes and everything else crossed!!).

[daffodil]

Hi Soxy,

A fabulous website is benefitsand work.co.uk -it is a charity and nothing to do with govt or dwp.There is a lot of free info available,but to download some stuff you need to join-I think it is £18 p/a but I can vouch that it is well worth doing.It hepled me successfully claim DLa after Meningitis in 2008.

It is indeed a mammoth form and a real challenge after Meningitis.

Some citizens advice bureaus will help you fillinmg a form -though Id advise not to unless you are physically unable to write yourself.I think using benefits and works advice you can make a better case for yourself.Other free advocacy charities may also help,but these have been cut by the government -wonder why lol!!!

I will contact you via private message with the details as dont want to put my email online.

My personal tips from past claims are;

firstly imagine you are a lawyer and you are trying to put a case forward for yourself -these forms are marked by admin officiail ,who have tick boxes so if you dont give them enough info about your conditions and how they mean you need DLA ,they will turn you down,send you for medicals or ask for more info.They are not medics,so you have to provide medical info before they request it from specialists -who sometimes charge DWP for them!

Dont panic about timing -there is a time limit,but if you phone up and say you are having difficulty with gettimg it in on time they will give you an extension.Put a wee note in with it and say how horrificcally difficult it has been to fill the form when you are dso unwell.Obviously the more time you take the later you bwill get award,but it is always back dated to day you aked for form.It is better to get all the evidnce you can get first than send without any and have them turn you down,need to appeal etc.

1)before starting prepare info and evidence-you need to get as much proof as you can that you had Meningitis and also of your other conditions.You are entitled under law to have access to your medical records.contact the hospital where you wrer treated for Meningitis and request letters -I have my ICU admission letter and the discharge letter from hospital -though I didnt put this in as they said Id made a full and remarakable recovery which was not true,nor did they follow me up to find out what effects I am left with.

2) iF you have a supportive GP this can be very valuable as they see you more and will be more aware of the problems you still struggle with.Though they will tell you they have to fill out a dla/dwp medical form for you automatically this isnt always so -my Gp was not asked for info in my second application and they then came back to say they didnt have enough info so I had to have a home medical! Ask you Gp(if he/she is understanding and supportive) if she would write a letter of support for your DLa application,stating all your health problems but even more imprortantly how these problems mean that you need help with mobility and care.

I f you have used MT counselling,grants,helpline put that in also.

3) A benefits and work tip which I would have never thought of,is to also keep eveidence of any major,serious falls or accidents you have had becuase of Meningitis.Eg As my balance is so bad I frequenly fall on my crutches and tumble over.I had a major burn when I overbalanced on my perch stool and cuppa went down my stomach and legs.Form asks if you have had any falls,dizzy spells ,so if so detail dates of any consequences.

4) other thing to keep stressing -every single question even if you have to repeat yourself all through -is what things are difficult and why.eg I am virtually unable to walk with crutches and cant stand or walk at all without them.I stress that because I am constanly dizzy and unbalanced that I need help all the time to keep me safe and also for confidence as I have lost all confidence to be able to go out alone.Even if you do not actually get help 24/7 you still need it to avoid risk -risk is a good catch word.They can argue eg that if you are bedbound or in a wheelchair you are not at risk as you are not moving about!!!Same goes for personal care - you may not need constant care,but your condition eg dizziness,loss of balance,fits,sight or hearing loss may mean you are at greater risk of injury if you dont have care.You may not have money for care or simply be too proud to ask for it,so even if you dont currenlt have any that doesnt matter.

5) get family and friend,carers,OT ,physios all to give account of what they do to help you.My daughter wrote a list of the things she does daily to help me.

6) photocopy your completed form,and even make a spare one to practice on?Keep photocopiies of all letters and all correspondences eg if you phoned DWP,dates and who you talked to -this is crucial as unless you do you never get tpo speak to same person again!

Sorry this is very long!Will get nback to you privately,as obvoiusly ther may be things you dont wish to have on public forum.My heart goes out to you Soxy-I justwent through a renewal last year and it is sooo stressful,so anything I can do to help just say so.

[Dene]

Good advice there from daffodil

NO Hospital follow up thats crazy

my wife is 14 months post Bacterial M and severe Septicaemia

She has lots of problems our local NHS has been great we have had loads of follow up care from Occupational Therapists.Physios.Neuro people.rehab doctors.rehab centre work. hydro pool work GP help. Memory specialists you name it we had help scans,MRI.CRT,too

ring and tell your gp to refer you they should do that from day one

i have it's got things going fast.plus contact your local Adult Social services tell a social worker you need to see them and a Occupational therapist they have been good they did a full assessment of our needs we have had a zimmer frame.wheelchair.comode, etc sorted straight away.mods to the bathroom a shower easy use taps extra stairs/door rails/bannisters etc

it only took 3 week for us to see local Adult services and OT wait until you get there report then send it with your DLA Form dont worry about the time scale DLA it will be backed Dated from when they sent you the from

local Adult Social services even registered me with the local council carers scheme if i need help or im ill i just need to ring them to get cover or help with the wife

Good luck

[daffodil in reply to Dene]

Wow,Dene -you seem to have been really lucky with the amount of help and folowup your wife has had.It is good to know that some are receiving the help they deserve.I know I had no follow up from hospital,but am lucky to have a supportive Gp who did organise OT and physio.Everything else was just left and I had to request to see ENT specialist,neurologist as after a year I was still in same postion.

These days it seem yopu have to be your own advocate and request -fine if you can or have like your wife,a partner to help ,but My heart goes out to the many who seem to be abandoned after Meningitis.

Although I never had a social worker,I d know they can work wonders and help you through the maze of forms.

How are things going for your wife ?

[Soxy]

Hi Daffodil and Dene,

Thankyou both so much for your replies to my blog.

Daffodil - I have now read your reply and as Dene said you have given me some very useful advice. I'm going to ring for the form tomorrow or early next week (depending on how I feel). I've asked my husband to print off some info that I was sent via Ffion and also your reply, but it does seem like a minefield and knowing how I have struggled with forms and questionairres I can feel my anxiety increasing before I've even got the form.

Dene - like Daffodil said you do seem to have been really lucky with getting the help and support that both yourself and wife need following M via various professionals. I think from reading other posts it very much varies from area to area as to the support offered/available following M via NHS. I am being refered by my GP to see a Neurologist but who knows how long I'll have to wait for that appointment to arrive. All I can say is thank goodness we have the support of the meningitis trust who cover every area - I don't know what I would have done without thewir help.

[AbbyRudi]

Soxy,

The DLA form is very long, I just completed one for my husband who has a chronic health problem.

You could try the Citizens Advice Bureau, I believe they have experts in benefits. If that proves unsuccessful I would call Social Services and ask for advice in completing the form.

If for some reason you can't find help the best advice I can give is to remember to complete the form with your WORST day in mind, not your best day. (The same holds true if someone completes it for you or with you ... always give answers that reflect your worst days.)