work capability assessment

Hi all
mum had a letter today informing her she will get a form sent soon for her to complete to see if she is still eligible for ESA, or if she should be getting a job!

I remember the last time we went through this and the hours and hours we spent completing the form. Has anyone else had success with the form with writing very little on it- just dont want to waste time on completing the form but worried if i dont complete it fully then her benefits will be stopped.

How can they expect someone to get a job if they cant speak, eat or barely drink. I am so exasperated with the benefit system to be sending these sorts of letters when they know already how ill people with MND are. I am not saying that people with MND cannot work, but clearly as the disease progresses and just trying to take fluids is difficult then looking for work is ridiculous. Why don't the benefits agency send a nice letter, asking how things are and approaching it differently instead of these letters saying fill the form in, we will send you for assessments etc to see if you are fit for work, benefit may be stopped etc.

I am just ranting but think tomorrow i will phone them and explain that what they are proposing to do is ridiculous. i thought things were going to get better after the professor harrington review but it seems the same.
aggh
luce

[ian]

Hi Luce,
Try contacting OT or social services they will normally know a dept or charity that will assist you to complete the forms. And, they know what are the right answers!

[pete]

Hi Luce,

A large proportion of those letters are automated , and i have found if you ring them and manage to find a HUMAN BEING in there , You can normally find out what is the best way to stop them sending them to you . Its like so many things now , its all computor generated and You are lucky to get anyone in the benefits system who cares about individuals. There is the DS1500 form you can get from GP that seems to work for most departments.

pete

[soniamm]

Please don't ignore these letters as we did, they stop all benefits if they dont hear from you. It took forever to get reinstated.

Soniamm

[teynhambees]

Pete,

I tried the DS1500 with my GP and she said, "Its for people with palliative care", to which i quoted the Disability rights handbooks definition, "If at that time you have a progressive disease and your death in consequence of that disease can reasonably expected within 6 month." I read a bit further into and it would seem that the "death" element is open to some interpretation and cannot be predicted and is usually ignored so on that basis I was miffed as to why the GP wouldn't sign it after all is MND is a progressive, degenerative illness with no treatment or cure, surely MND should just be straight forward with no issues? It would seem like it was too much paperwork?
Now i'm set for another battle the CSA and critical life! Joy!
Thankfully my MND Nurse wrote a supporting letter and with the help of Adult Social Services they helped complete the form and I have been awarded both higher rates of care and mobility.
Luce - If i were you and like me bewildered by the forms ask your MND Nurse to help its worth a go or call MND Connect but i agree with Soniamm if you do nothing and not in THEIR time frames you will loose it and it will be a fight to get it back. I would also recommend looking at buying a copy of the disability rights handbook pages 51-60 are really helpful. You can get a copy from Amazon the ISBN is 978-1-903335-53-6
The rules are changing i believe i could be wrong from April DLA is changing to PIP so maybe other elements may change even slightly?
Oh and something work related i am facing if someone has recently been diagnosed and is still working reading the post you should also consider an Access to Work assessment so that your employer can make 'reasonable' adjustments in the work place.

[pete]

Pete,

I tried the DS1500 with my GP and she said, "Its for people with palliative care", to which i quoted the Disability rights handbooks definition, "If at that time you have a progressive disease and your death in consequence of that disease can reasonably expected within 6 month." I read a bit further into and it would seem that the "death" element is open to some interpretation and cannot be predicted and is usually ignored so on that basis I was miffed as to why the GP wouldn't sign it after all is MND is a progressive, degenerative illness with no treatment or cure, surely MND should just be straight forward with no issues? It would seem like it was too much paperwork?
Now i'm set for another battle the CSA and critical life! Joy!
Thankfully my MND Nurse wrote a supporting letter and with the help of Adult Social Services they helped complete the form and I have been awarded both higher rates of care and mobility.
Luce - If i were you and like me bewildered by the forms ask your MND Nurse to help its worth a go or call MND Connect but i agree with Soniamm if you do nothing and not in THEIR time frames you will loose it and it will be a fight to get it back. I would also recommend looking at buying a copy of the disability rights handbook pages 51-60 are really helpful. You can get a copy from Amazon the ISBN is 978-1-903335-53-6
The rules are changing i believe i could be wrong from April DLA is changing to PIP so maybe other elements may change even slightly?
Oh and something work related i am facing if someone has recently been diagnosed and is still working reading the post you should also consider an Access to Work assessment so that your employer can make 'reasonable' adjustments in the work place.

Hi Scott,

Can only say , I tried so many times with the neuro, but it was my own GP who finally got me the elusive DS1500, quite let down when i had it given to me ,It was made out of recycled tissue paper and not much on there ,but it worked ?,like you i finally got the higher level , It still remains a mystery to me having been told , You have a TERMINAL condition and your going to die sooner rather than later ,offer no helpful treatment ,,,why isnt this awarded without all this fussing around , What part of terminal do they not understand . And feel for luce ,how can they expect someone suffering with no speech and unable to drink or feed easily, quite apart from the rest of it, time for the organisations to fill in the benefit brigade as to what having MND is all about. RANT OVER . How are you keeping, Scott and regards to the wife

pete

[hilary walklett]

It's like you said, Pete - a faceless system that marches to tunes played by the computer; getting hold of a human very often works better. However, whilst I empathise with your rant, luce, (I was really put off by the DLA form and assessment, espec. as I was knocked back on first application!) there are two things to bear in mind.
One is that the DWP know very little about MND - or any other of the "rare" conditions so can't make judgements on it until they get the information.
The other is that there are (I think) five versions of MND, of which only one is rapid. This is the most common one, ALS, but the others are much slower.
For instance, I have had MND all my life (although I didn't know about it until I was in my 50s) and I continued to work until I retired at 65. I received DLA during the last eight years of work and I think that that will go under the new arrangements, although I would probably qualify for the Access to Work scheme.
I agree, it IS a pain to have to go throught these hoops and I know the External Affairs at National Office are doing their best to get some form of exemption for people with MND but, until that happens, we have to do our best we can with the system as it is.

[magic]

The whole system is outrageous and I have ranted at my MP abOut it. Should you have to complete the dreadful form and need additional help think about subscribing to www.benefitsand work.co.uk. They have excellent 'join the dots' advice on filling in the form. Hope you manage to avoid it. Good luck .

[luce]

Thanks everyone, just seen the replies. Will speak to mum tomorrow about it. she is seeing the GP on Thursday. Think i will call the benefits people but make sure something is sent back by the deadline,
what a nightmare
luce