Desperate newbie needing help - carers allowance suspended without warning

Hello Everyone

I am full-time carer for my partner and part-time carer for my stepfather. I have been looking after my partner for many years although I have only been claiming carers allowance since July 2023. My partner suffers from chronic mobility issues (diabetic peripheral neuropathy) and my stepdad has dementia. I am also self-employed.

Being new to carers allowance I was unaware that I should have received forms in February, or that I should have returned them completed by April 7th. I did not receive any forms this February and hence missed the April 7th deadline and as a result my carers allowance has been suspended, with zero warning, since March 28th.

When I realised that my payments had stopped two weeks ago, because my bank account had gone over my arranged overdraught, I rang DWP to find out why. No reason was given and the agent said they would send a referral to decision makers. I was told there was no time frame. I phoned a second time to make a complaint (no forms, no warning of suspension) and was told the same again. I stressed the urgency of the matter as apart from 3 hours with my stepdad I receive NO money and was suffering extreme hardship. My electricity bill remains unpaid, I have no money for food and am entirely reliant on my disabled partner (disabled pensioner) financially.

I made a third call and asked for my case to be escalated to a senior manager. The agent was reluctant to do this until after much persuasion he said he would 1. Send me the forms I hadnt received in February and 2. Escalate my case for which I would receive a phone response within 72 hours.

That was a week ago. I am now suffering from panic attacks and stress. I ended up in A&E with heart palpitations and sudden high blood pressure and am struggling to care for my partner & stepdad. I know I can call DWP again, and again…and Im going to receive the same indifference every time.

What can I do? I am absolutely desperate! I dont know where to turn

1 Like

Hi @Merwyn, welcome to the forum. The dwp are in the wrong and should try to help you. Have you been to the job center and asked them? I would suggest contacting the carers helpline, citizens advice and maybe your mp if they have the time.
The 1st 2 I suggested will help you in getting support and advice.

Sorry to hear what a desperate situation you are in. You are right in that the DWP should sort the problem out asap as they have created it, but don’t rely on them getting back to you in a timely fashion.

I agree that Citizen’s Advice is probably the best place to go for immediate help, or call the Carers UK helpline, also there is a site called which also gives useful information on benefits.

Hello Michael, thank you for the welcome and your advice.

I contacted carers uk who could offer no help other than signposting me to citizens advice and the disability law service. I tried contacting the disability law service and got an automated message telling me to leave name & number and to expect to hear from them within 3-5 working days.

I tried to contact my local citizens advice but got no answer

I phoned carers allowance again who told me a manager had tried to call me today but got no answer (no record on my phone of a missed call). I was told to fill in the form (I still haven’t received) and send it back. I pressed the urgency of the situation and eventually the agent agreed to complete a form to give to a manager to call me back, with another ‘it will take up to 72 hours’. The last time I heard that was a week ago *shrug

I found a ‘suspension and termination of benefits’ guide aimed at staff and it’s very clear DWP have failed on their obligations over and over. It’s diabolical.

Citizens Advice tomorrow.

Apparently if you are self-employed you are supposed to complete ‘year end’ accounts information before the tax year has even ended. Strange, that HMRC and Working tax credit allow you a full 10 months to supply this info after year end, but self employed carers must provide this info by April 7th, 2 DAYS after tax year end. This is a shambles

If that is the case, then CUK need to take this on board and get the rules changed!