Asthma UK community forum

Welfare Reform/ Benefits

Today i have been informed because i was born with a genetic condition i am not entitled to benefits i am expected to live off my my parents income depsite living in private rented accomdation with help from social services for personal care. This came from a welfare advisor who was helping me to find out why my income support had been stopped on 9th March.

Has anyone else had this? Or am i just one of the unlucky ones?

23 Replies

aww Plumie,

carnt believe you got go through all this ,they can see you need the help.

Hope things can get sorted for

love Glynis xxx


Plumie, that's appalling and I'm so sorry this has happened to you. This must be something new if you were getting benefits before, so I would hope there would be somewhere to register some sort of appeal.

I really hope that you get some help with this soon.



How ridiculous! Who comes up with this rubbish? Obviously someone without an ounce of compassion, or common sense for that matter. Sorry I can't be of any real help as I've no idea who you appeal to, but I hope you manage to get things sorted. Sending hugs x


Sorry Plumie but I think that is utter rubbish, god almighty but if that is the case we all have no hope. Fight is all the way, and enlist your local MP, GP the lot, go at them with all guns blazing.


Discrimination, surely?!

Hi Plumie,

So sorry to hear you're having to go through this, just makes it all so much more stressful (which they don't even seem to have considered!)

This does sound very odd, if true - so odd I'm inclined to believe your welfare advisor, or whoever they got this from, doesn't really know what they're talking about. Surely denying benefits on the basis of a condition being genetic counts as discrimination and is no different from denying someone benefits on the grounds of their race or sex (which are also 'genetic conditions' in one sense). I could understand, though I'd still think it was unfair, if it were insurance which is allowed to discriminate where other things can't, but this isn't insurance, it's benefits! Why does it matter how you got a condition, if it makes you unable to work? And relying on parents' income is ridiculous - what would you be expected to do if you had no parents, or they had no money?

I'm sure you were planning to, but definitely raise a fuss - I'm not an expert or anything but find it really hard to believe that is legal and not discriminatory. It may of course just be someone getting hopelessly muddled, but if it is true (and how the hell did they manage to pass that change quietly if so?) then kicking up a bit of a fuss ought to show how completely wrong it is in a country that claims to be anti-discrimination.

Good luck, and hope things get sorted out for you!


It is so frustrating for Plumie I do hope things get sorted soon for you.


this is outright discrimination! it is apalling. if they suddenly stopped it after so long, has there been new legislation or something?

so sorry you have to go through all this. defo need to appeal this decision hun.

hope things go the right way, and you get the decision overturned, hope wedding planning going okay :)

x x x



Hi pulmie. It may be worth you seeking advice at the CAB. At least they'll be able to guide you in right direction for help to appeal ie legal help. Which you should get free. Catherine


Hi Plumie,

Im apalled at the way you have been treated.

How can you be penalised for being born with a genetic condition?

Who the heck comes up with a reason like this anyway?

What are they going to use next to stop peoples benefits?

Apparently, income support & incapacity benefits are going through reform. Im unsure exactly where, but the only benefit the government wants people to be able to claim, will be ESA.

Employment support allowance.

Within a couple of years, if you claim housing benefit, this will also be reviewed. Basically, if you are a couple, living in a 2 bed house/ flat etc, your housing benefit will be reduced to cover only 1 bed accomodation.

Naturally this will result in your housing benefit being reduced also. The difference will have to be made up from whatever money you are living on.

As far as the government are concerned, once they get rid of income support & incapacity benefit then put people on esa instead, it will save millions.

They dont care if you get in a mess with bills, rent arrears etc.

As long as benefits can be reduced, thats all that matters.

You can bet your bottom dollar that if they manage to get everyone on esa, people will be treated as new claimants & it will take weeks to sort out.

My youngest daughter is disabled. When she filled in the form for mobility, it took 5 weeks to sort out. She gets the mobility part, but not the care part. I think she got top rate mobility bout 200 a month. She was dealt with quickly & was backpaid to date she filled form in.

Then she had to fill in forms for esa. She filled in forms she was sent & posted them back.4 weeks later nothing happened so she rang up to be told she had filled wrong form in & didnt qualify.

They sent forms out cos she wanted to appeal. She got the exact form to fill in, even though they said it was wrong one. She took it into jobcentre & they helped fill it in. Another 4 weeks passed, she rang up to be told. We havent received any form.

They said just go to local job center & fill forms in. My daughter is in a wheelchair & doesnt have strength to self propel.

So we went back to job centre, forms filled in, photocopied, job center sentthem.

4 days later she got letter saying not entitled. She rang up & was told she could appeal but not likely it would change outcome.

She appealed.

Almost 4 months passed since original claim.

She got letter stating she was entitled & she would be backpaid to date on the last form filled in at jobcenter.

She rang up to say she had been messed about for 4 months & should be backpaid to 1st claim. She was told. Someone will ring you back.

3 days later a man rang her. He apologised & said she would be paid from very fist form & he said he didnt know what went wrong.

Amy received 4 months backpaid esa benefit. She was also backpaid housing benefit to start of claim & told her council tax was also covered.

At last it was sorted out.

I expect the same problems when they put everyone on esa.

I also expect they will treat it as a new claim.




I have sent an appeal form in today. Just to clear things up i received a letter from my job centre stating due to genetic condition i could not get income support any more it was not welfare advisor.

I will keep you folks posted on the outcome of appeal.

It is really stressing me out!




The appeal can take up to a year to go through and i am expected to live without an income for this time!

What has happened to protecting the vunerable?



Plumie, I'm so sorry you've been told you'll have to wait for so long and I really wish there was something i could to do help you. Is your MP any good? If you can get him/her on your side it could speed things up a bit.

Keep well



Good news i think


I have been told i can have housing benefit, council tax benefit and Disability Living Allowance.

I am also allowed 10 hours of Home care a week.

I am going to accept this and be happy.



Plumie, what good news. You must feel as if a huge weight has been lifted off you. I'm so pleased for you.

Keep well



Really pleased for you Plumie x


I'm so glad you've got your financial and care situations sorted, it must be such a relief for you, especially with your wedding coming up. Did they give you any explaination for the original letter? I hope they've sent you a written apology for all the extra stress and worry they caused.


Hello Plumie,

I am so glad they have sorted it out for you.

What they said and did was appalling!

I cannot understand how on earth they came to that decision.

Happy Hugs



Great news for you, pleased you sorted now. Just a shame they had to put you through all this worry in the first place. Pleased common sense prevailed. I think that most of the problem these days is caused by too many high ranking people with all sorts of qualifications, but no common sense at all, !!!



oh plumie

that is fantastic news i am really happy for u babe :)

x x x


Great news Plumie and 10 hours help xxx


Can i just point out they are not willing to give income support or Employment and support allowance or incap benefit or job seekers allowance. Which affectly means you have to pay for your care, food, bills etc out of your DLA.

Just so others realise that they are now stopping the above benefits for some people.

I can have housing benefit to pay for my rent, council tax benefit to pay my council tax and DLA to help me get out with a car and to pay a bit towards my care but nothing to pay bills, food etc.

It is crazy but it is certainly better than nothing at all so i am happy and relieved.

Hope nobody else hits this problem but it would not suprise me if you did.



Trouble ahead for all people claiming benefits.

E S A only idiots could come up with this.

Be prepared & ready to have assessment by government bullies



HI Plumie,

IT doesnt seem fair at all for you as to you have heath probs also asthma.

Surly not expecting you find work?

Keep on fighting and hope the tribunal if you can.

love glynis xxxx


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