Strange DWP behaviour?

Hello, thank you in advance for taking the time to read this.

I have been caring for my daughter for a year now (since November 2020). The claim for CA is from June 2021 as we did not realise we could claim before that. We are also waiting for a tribunal hearing date for DLA higher rate mobility which is for November 2020! (but that’s another story…)

Unfortunately my daughters condition is so severe that she needs almost constant care and is unable to attend school anymore. There are multiple parts to her condition making it impractical to explain on here and extremely difficult to manage day to day. One part of her condition involves involuntary motor functions such as hitting which happen throughout the day and so it is almost impossible for me to do anything during the day until my partner comes home from work.

My contact with the DWP has been bizarre. After contacting them to see how the claim was going and if they need anything else I was advised my financial situation was not an issue and I just needed to fill out a form for the small amount of self employed income I earn a year.

A week later I received an unexpected phone call from the DWP. The person I spoke to was not happy with the conversation I had with the other adviser (rude to be honest) and asked me multiple questions in what felt more like an interegation. At the time I had taken my daughter out to try and occupy her, which reduces the hitting and gives us both a break from her condition. The place was noisy and difficult to hear the caller clearly. She did ask for dates and amounts but I could only guess as I was out and had nothing to hand. The caller suggested they were not happy with my investment income and that they were escalating the claim to someone higher up in their department (contradicting the advice already given). After asking again for the self employment income form they also said they would send that out by post.

We did receive a letter (dated the same day as that phonecall) but it was addressed to my partner stating I had made a claim and that if it was fraudulent my partner should contact the DWP, if not do nothing. The fact that the letter came 2 and a half months after the claim date and on the day of that phonecall suggests that they didn’t feel the need to send it until the phonecall from DWP questioning my income? All bizarre behaviour in my opinion, why not send it sooner.

To this date the self employed income form has still not arrived, again bizarre behaviour. I phoned the DWP again today, waiting 30 minutes on hold and after giving my N.I number was told the caller needed to “close down the call”, he suggested they had other callers to speak to, bizarre why make people wait on hold to end the call. When I said I didn’t understand I was told I don’t need to understand and he didn’t need to explain himself to me. That was it, final.

Waiting on hold in the small amount of time you get whilst caring for a child with a very severe condition is frustrating but unfortunately part of life. Being told its essentially not convenient to speak to you after being on hold for 30 minutes and being told I don’t need to know why is quite frankly unbelievable. If they do call back there’s a high chance I won’t be able to take the call and if I do take the call I will likely have only one arm free to restrain my daughter from punching me in the face, shouting out and swearing involuntarily and she will spend the entire phonecall desperately trying to press the end call button and be as disruptive as physically possible (all of which are impulses either voluntary or involuntary).

I guess as long as the timing of the phonecall is convenient for the DWP I suppose that’s the main thing after all right? :unamused:

Anyone had this sort of behaviour from the DWP? Is this standard?

DWP made many staff redundant/offered early retirement, not long before Covid. My closest friend worked for them for many years, delighted to take the retirement, but concerned that she and experienced colleagues were being replaced by a computer programme and staff with 6 weeks training. The computer programme didn’t cover all options.
We both agreed that if the economy took a nose dive, DWP would be in trouble.
Then came Covid!!!

Under these circumstances, I’d make a “Subject Access Request” for all details of everything they have written about you. By law, this has to be supplied in 30 days or so.

My son has severe learning difficulties, I understand totally how difficult it must be to care for your daughter.
Are you aware of NHS Continuing Healthcare? Children with very high care needs are entitled.

Hello Richard

I wanted to wish you a warm welcome to the forum and to highlight some of the options for connecting with fellow carers and for getting support from Carers UK should you need it.

Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to. I’m sure you’ll find others in a similar position to yourself.

You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: Online meetups | Carers UK
This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: Share and Learn | Carers UK
To date we’ve run sessions ranging from creative writing activities to beginners Latin dance sessions. Please have a look at the attached links and see if you would like to come along.

We also have our Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (

with best wishes

Hi, thanks for the info, it’s nice to speak to someone who understands how difficult things can be.

I will definitely consider this subject access request if I don’t get any further with the DWP. Not aware of the NHS Continuing Healthcare either, had a look online but not quite sure what Financial help they could give us? We are currently trying to get the school she’s no longer attending to fund a tutor. An EHCP is currently in the pipeline but everything works so slow. The school SENCO has been great but have no experience of this so it’s a learning curve for them and us. We’ve had support with the DLA claim from both the Peadiatrician, CAMHS and the GP but the DWP have spent a year talking nonsense and we’re now at the tribunal stage which is a shame as they could have helped us months ago but chose not to. CAB have been absolutely amazing and we would probably have given up on the DLA claim months ago if it wasn’t for them. Either way we will be thanking them for what they’ve done for us.

DWP did get back to me today regarding CA. Unfortunately the conversation went the same way and it felt like everything I was saying was being scrutinised. There was even a moment where the caller excitedly asked me to repeat what I’d just said and rudely interrupted me four or five times trying to get a specific bit of information out of me. Not quite sure what he thought he heard as I was only repeating to him what the DWP adviser said to me a month ago… When he realised that he became disinterested. He did tell me the adviser I spoke to a month ago was inexperienced and the advice he gave me was inaccurate.

Finally he said the form should have been sent to me weeks ago and he doesn’t know why they haven’t sent it (I have a few ideas). He said he would send it today and I’d receive it in the next three working days. He is also sending out an additional form regarding the property I let so they can decide if the property needs to be treated as an investment or a business. This is the big issue and it seems there is no exact guidance anywhere on whether the income needs to be treated as earned or investment. If its treated as earned then it would likely take me slightly above the threshold. If its treated as investment then I’ll certainly be below the threshold. I’m at the point of not caring either way, I don’t have the time or energy to keep phoning and chasing forms particularly if they’re trying to do everything they can not to award us CA. I’d just rather they made a decision so we can all move on.

Hi Ingrid

Thank you for the message. It’s nice to know there are some bits and pieces available to us through Carers UK. We are fortunate in that there is a charity specifically for her condition who offer similar things as well as funding for purchasing items to help with her condition (although amazingly she has raised more for them than she has received back!)

Not sure how much use I’d be at Latin dance but I’ll definitely keep an eye on the sessions and see what comes up!

Thanks again

Continuing Healthcare would mean you could have free care for your daughter at home, so you could take a few hours or more off. Keep a note of the date and time of phone calls, the name of the person you speak to, and what was said. Take control of the conversation. If you feel the person you speak to is poorly trained, you can stop the conversation at any time and say you are not happy with what they are saying, tell them and ask to be transferred to their line manager. They should do this without question. (My friend ran a DWP telephone team at one stage).

I should have said that if your daughter qualifies for CHC, then there is a choice.
Either the care is arranged for you, or instead you could have Direct Payments, and arrange your own care.
I believe that under some circumstances, which would need approval, you could have these for the time you provide care yourself. (There should be the same option with Social Services too).

Thank you again, I’ve had a look at CHC online and can’t quite get my head around it. Certainly something to try and find some time to look into in depth. We’re currently right in the middle of getting an EHCP and expecting our DLA tribunal date any day now (along with the CA forms on their way) so might hold off doing too much CHC research right now. I will say that the biggest part of care for us is the fact she can’t be left alone due to a multitude of reasons. She doesn’t need help washing, dressing or in the bathroom.

Your daughter clearly doesn’t suite the “tick box” mentality of DWP!

My son (now 42) had DLA awarded for life when he was young, because of his behaviour. His brain damage at birth meant he couldn’t read, write or do any maths, and he was horrendously hyperactive when he was little. He needed an additive free diet too, as colourings and flavourings wound him up even more. The night before his assessment I gave him something with colourings in. The assessor came to our home, M was very uncooperative, and tried to climb the shelves next to the fireplace, beside the assessor!

Be sure to stress the need for 24/7 supervision. I know with DLA it was awarded to people who needed “support with daily living, i.e. washing, dressing etc”. or “protection from themselves OR OTHERS”. Surely she meets this criteria??