General Chat

This has been building up over years but now I have had enough.

As a lot of you know my eldest daughter is 29 and was diagnosed with multiple sclerosis at 18.

She got through uni with the help of the Welsh Assembly Government (who were brilliant in supplying a computer with specialist programmes, screen filters and magnifyers, also someone to transcribe during lectures).

Since then she has worked full time, even whilst going through muscle spasms and temporary loss of sight as is the way with MS.

We sent her off to Guatemala to stay with our son for 9 months as she was well enough to go. He understands the MS and looked after her when necessary.

Since returning she has deteriorated and cannot take a job where she is on her feet for long periods (bang goes the option for a non stressful job in a shop or similar). Also her speech is more affected (no chance of telephone work either).

She wants to work!!!! BUT she needs a standard non professional position which doesn't offer too much stress.

She has never received any benefit to date. We are now in the position of bringing her home to a small village, away from all her friends in a large town.

If only the DSS recognised that to award DLA it would help with her getting around to look for work. But as she has 'good day's she was refused.

She applied for housing benefit 3 months ago and they are arguing about an account with £28.26 in it and insisting she has money elsewhere. SHE DOESN'T. She still has not received one penny.

What is wrong with the system? When the great unwashed get every benefit going, because they lie and know how to play the system. Daughter doesn't lie and won't manipulate the form filling because she is honest.

So to sum up: she is looking at losing her precious independence because she cannot afford to stay where she is whilst looking for a job.

I have now decided it's time to step in. I have fought enough for other people over the years and have tried to leave her to fight her own battles as that is what she wanted.

I am just so damn angry about this. I will take this to Westminster if I have to, I will make a bl**dy nuisance of myself.

I know she is not the only person to suffer at the hands of the system, perhaps if I achieve anything it will benefit others in the same position.

All suggestions welcome.

Thanks for reading this, if you have managed to get through to the end.

Sue

this is terribble, my heart goes out to you both. have you contacted your local MP?

Sue, I don't know of anything that will help.. but if you or anyone else comes up with an idea, then let me know if I can help it in any way.


(((((hugs))))) for you and your daughter,

Love

Daff xxx

Sue this is just not right.

something is wrong here.

your daughter is entitled to DLA because she is sick.

She has MS, which means that they already KNOW without being told that she will have good and bad days.

You must fight this for her Sue, do not take NO for an answer.

there may be an ADVOCASY in your area.
they are people who will speak for your daughter.
They will speak to her, and you if you like... and find out her needs and strengths and weaknesses. Then they will make arrangements for meetings with 'the powers that be'.

you find out Sue if you have anything like this in your area.
you could phone SCOPE, they may be able to tell you... that is where I found out about them.

Good luck, and DO NOT GIVE UP.

Deanna X

Hubby is bringing her back for a couple of days and we are meeting with a friend who works for 'them' to brainstorm firstly.

I will contact her local MP this week and start the ball rolling with a complaints procedure to her local authorities.

My mind is in turmoil still, having decided I have to do something now, I have to take time I suppose to be more rational before I make a wrong move which may make the situation worse.

Sue

Deanna,

The criteria for DLA is that you have to be incapacitated EVERY day. As you know with MS (relapsing/remitting) that does not apply! Catch 22.

Sue

Sue... I am so angry along with you. I just do not understand our benefits system which rewards people who will not help themselves and penalises those who want to try and help themselves and live independent lives.

My daughter too has trouble managing and can't get DLA although she has terminal cancer.

Start an online petition Sue and I for one, and many, many others will sign it too.

((((((((((((HUGS)))))))))) for you and Caroline.

Jean x.

Hi Sue - Forgive me if you know all this and tried it already...but in case...

DLA - appeals are successful but better if you have someone from CAB or Social Services/Council Welfare Rights to represent her and guide through the system. They can advise about carer's allowances if successful.

Work - Has she been assessed by Access To Work at the Job Centre Plus (Used to be the old Disability service)

You can get help with equipment, support workers etc - but not sure if have to be in a job. They will give advice on phone.

Social Services can assess for help, equipment, adaptations needed at home. Waiting lists vary in different areas. Small pieces of equipment, aids are free in this area but only provided after Occupational Therapy assessment.

All the best with it. Liz

Jean,

Thanks I knew you would reply. You are one of those who know of her situation.

Re your suggestion about an online petition has anyone got any suggestions as to where and hosted by whom to get maximum impact?

Sue x

Dont you have to be in the Incapacity route first,? as I thought one went hand in hand with the other,,,,??

Get more forms and fill them in,,,,with perhaps a doctors letter,?or ask for an inverview with DWP,,,,,,,,,

Other than that a Good sun tan may work better,!!!,

Kay????

No she doesn't need to apply for incap. I work full time and receive DLA because of my arthiritis and migranous hemiplegia.

She has a new consultant who I am sure will support her claim but the initial application was thrown out 2 years ago when she was interviewed on her own by the 'panel's doctor'. She was steamrollered!!

Re the 'sun tan' I did mention that and was accused of being racist!

Sue

Sue, you can access the petitions thingy at Parliament online... it might be an idea to see if there is a similar petition that we can add to, and also if there is a campaign in existence, we could join that one for added support.
I'd contact my own mp as well... you would be emphasising the changes your daughter will have to make if the appropriate support isn,t made available so that she can continue to be independent and work.
The system truly does stink, doesn't it.

Love

Daff xxx

I would appeal against your daughter not been allowed DLA as we get it for my son who is Downs Syndrome so I am sure that your daughter is entitled to get it.
Lisa xx

Sue.
Well steamroller back,!!!!,as it was over 2 years ago .you may stand a better chance now with you daughter,,,explore every avenue and send 2nd application in,,

Somewhere the system is failing her and others who do need it,,,,,,,,,,,,,

I have 2 friends they are brother and sister both have M/S and both get ..Carers/DLA/plus Mobility,,,plus other enhanced benifits,,,,,,,,,,

Thanks for replies and pm's.

I will look this week to see if there are any current petitions, if anyone finds one please let me know.

We will ask for the forms again and re-apply as her symptoms have increased.

If anyone has experience of fighting the system which relates to this particular issue, please, please let me know.

Thanks

Sue xx

Sue, love, I am disgusted!!

The system is terribly abused, I wont go on about how because I'll probably get jumped on but we all know it is.

You go for it girl and hold your head up high,Im AMAZED your lass isnt getting DLA!!

All my best wishes,

Caz xxxx

dont know what to say Sue
But heres a (((hug))))
Rosex

Just popped back in before I start unplugging all my bits... want to move me puter into the conservatory for the winter!!

I have just been onto the MS Society website.. are you members? That is often a good place to start a search, and I also notice that they are advertising jobs, as well... worth a look?

If I think of anything else, I'll let you know.

Love

Daff xxx

you rant away hu
thats what friends are here for

Hi Liz,

Thanks for suggestions. My issue is tyring to keep as positive as possible for her, and in doing so keeping her positive. She doesn't regard herself as disabled at all! That's how she deals with it.

I don't know if I have made sense here, I need for her to feel she is worth something to society to keep her positive attitude to the illness in tact.

Sue x