My 4yo had a brain tumour - can I claim any kind of carers allowance?

[RedSauceSpaghetti]

She has started school for an hour or so per day and is doing really well on the whole but she needs 1:1 help with lots of tasks and has to be carefully supervised in the early years classroom due to general 4 year old clumsiness/enthusiasm which puts her at risk of head injury through them falling on her/knocking into her etc.

She is unable to walk unassisted and has lost most function of her right arm (she is left handed). School are applying for high needs funding for her so that they can supply the help she needs (which I am currently supplying). This won't come in until January at the earliest.

We have almost 2yo twins at home who are looked after by my husband while I am at school in the mornings. He has arranged to work flexibly for now but he can't sustain this level of part time working until January and beyond, especially as he is regularly off for childcare while I take DD to various appointments and physio etc. plus he had a lot of time off when she was in hospital.

Really, we need to send the twins to a childcare setting for the mornings until school funding kicks in but we don't have the finances to do so. Am I able to claim anything to put towards this along the lines of carers allowance or similar?

You need to apply for dla first. If she gets that then you can apply for carers allowance.

Google the “cerebra dla guide” and that will help you.

Sorry to hear about daughter. Apply for DLA, you can then apply for carers allowance if you are awarded medium or high rate care.
There’s both care and mobility components for DLA.
Low/medium/high care
Low/high mobility.

Also, if you claim tax credits there is a disability element for that too.
All the best.

Thank you both, that's very helpful!

Sorry to hear about your DD, great that she is able to start spending some time at school again but what a lot you must have all been through so far

As PPs said, you need to claim DLA for her before you can claim Carer's Allowance, and unfortunately this is unlikely to be quick, so you won't get it any sooner than the school gets the funding, although it should be backdated to the date that you start the claim.
See www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/help-with-your-dla-claim/how-to-claim-dla/
And contact.org.uk/help-for-families/information-advice-services/benefits-financial-help/benefits-and-tax-credits/disability-living-allowance/

Do you claim tax credits or Universal Credit? If not, you might possibly be eligible for UC, depending on your household income and savings, and whether you rent or own your home.

You might be able to apply for 2 year funding for the twins. I'm not sure if the criteria varies from region to region but contact your local county council and they should help.

It must be a very stressful time for you.

Contact the oncology team and ask to be linked in with Clic-Sargent - think they are now young lives vs cancer which www.younglivesvscancer.org.uk/what-we-do/financial-support/ have social workers and other who can help you navigate through this time. You may be able to go them directly.

Also, if you haven't yet done so, ask your council to do a Carer's assessment for you:
contact.org.uk/help-for-families/information-advice-services/social-care/how-to-access-services/carers-assessments/

@Moonflower12

You might be able to apply for 2 year funding for the twins. I'm not sure if the criteria varies from region to region but contact your local county council and they should help.

It must be a very stressful time for you.

I don't think they would be eligible unfortunately. The criteria are listed here: www.gov.uk/help-with-childcare-costs/free-childcare-2-year-olds

@ipodtherforipoor Thank you. I will do this ASAP

I've looked up DVLA and as she hasn't been unwell for over 3 months and may not be for a further 6 (her needs change daily) I'm not sure she would qualify.

Oh and to answer a PPs question, I don't claim any benefits at all at the moment besides child allowance.

@ipodtherforipoor

Contact the oncology team and ask to be linked in with Clic-Sargent - think they are now young lives vs cancer which www.younglivesvscancer.org.uk/what-we-do/financial-support/ have social workers and other who can help you navigate through this time. You may be able to go them directly.

The YLVC social workers in our area seem to just refer all their patients to the Macmillan benefits service.

[quote RedSauceSpaghetti]@ipodtherforipoor Thank you. I will do this ASAP

I've looked up DVLA and as she hasn't been unwell for over 3 months and may not be for a further 6 (her needs change daily) I'm not sure she would qualify.[/quote]
Most children with cancer will be awarded DLA. I do a lot of DLA claims for children with cancer and never know any get refused especially if having treatment. I wouldn't worry too much about the 3 month rule. By the time her claim gets assessed she will have had difficulties for 3 months so the worst that could happen is that they don't backdate it right to the start of your claim.

@Babyroobs thanks for that info. I have filled in an application this morning

[quote RedSauceSpaghetti]@Babyroobs thanks for that info. I have filled in an application this morning[/quote]
If she is having any ongoing chemotherapy or radiotherapy be sure to detail side effects etc and send hospital letters prescription list etc.

Usually you would call to start a claim and then get sent an application form to complete and return. Did you call first or complete the form straight away?

@AnotherEmma I called and they directed me to a downloadable and printable form

@Babyroobs we are incredibly fortunate - surgeons had an intraoperative MRI machine at their disposal and were able to re-map and go back in to remove the entire tumour during her surgery (which we were told would be near impossible)! She is getting extensive physiotherapy and also has some visual issues which are being explored but essentially she has no more treatment besides regular scans to check for regrowth. We have been unbelievably lucky.

[quote RedSauceSpaghetti]@AnotherEmma I called and they directed me to a downloadable and printable form[/quote]
👍

[quote RedSauceSpaghetti]@Babyroobs we are incredibly fortunate - surgeons had an intraoperative MRI machine at their disposal and were able to re-map and go back in to remove the entire tumour during her surgery (which we were told would be near impossible)! She is getting extensive physiotherapy and also has some visual issues which are being explored but essentially she has no more treatment besides regular scans to check for regrowth. We have been unbelievably lucky.[/quote]
Amazing. I can only imagine how you must have felt during that operation! Glad it went so well. What's the prognosis for her recovery? Or are they waiting to see how she gets on?

@Babyroobs it was pretty hairrazing! We were told we'd get a call around 6 hours after she went down and we were still waiting 9 hours later (due to them going back in to remove remnants of tumour) but we didn't know that at the time. Definitely the longest 9 hours of my life!

Initially she was almost entirely paralysed so things didn't look great. She also couldn't keep down any food for 3 days and had some speech issues so we were really worried to start with. However, she turned a corner on day 4 and took her first (very supported and incredibly unstable) steps on day 6 and could sit for a few seconds unsupported by day 7. I know it sounds so trivial but they were massive, massive milestones!

She relearnt to speak seemingly overnight arpund the same time, and has regained all of her cognitive function, which was honestly my biggest concern.

At the moment, it's still early days and hard to be sure how far she'll recover. It's likely she will have some weakness on her right and difficulty with fine motor control in that hand for the rest of her life. Vision we are expecting to correct over time (she's lost the ability to focus on objects - much like a newborn)

That said, physio have been (in their words) speechless with the speed of her progress in the last 3 weeks, and we are only a month or so post-op, so we are remaining hopeful and not striking anything off just yet. She has been unwaveringly determined throughout it all and is constantly pushing herself to try the things she finds hardest. She's honestly been utterly incredible. I didn't know it was possible to be this proud of someone. She's a total superstar!

If it helps you any, I had a brain tumour at 3 with weakness and problems with motor control on one side, I had assistance throughout school. I also receive DLA and my mum got carers allowance when I was younger. I'm now in my 30's, married with children, and living a mostly independent life, weakness still there but you can adapt. Just wanted to give you hope for the future because I know it must be worrying. Sending you and your DD lots of good wishes.

[quote RedSauceSpaghetti]@Babyroobs it was pretty hairrazing! We were told we'd get a call around 6 hours after she went down and we were still waiting 9 hours later (due to them going back in to remove remnants of tumour) but we didn't know that at the time. Definitely the longest 9 hours of my life!

Initially she was almost entirely paralysed so things didn't look great. She also couldn't keep down any food for 3 days and had some speech issues so we were really worried to start with. However, she turned a corner on day 4 and took her first (very supported and incredibly unstable) steps on day 6 and could sit for a few seconds unsupported by day 7. I know it sounds so trivial but they were massive, massive milestones!

She relearnt to speak seemingly overnight arpund the same time, and has regained all of her cognitive function, which was honestly my biggest concern.

At the moment, it's still early days and hard to be sure how far she'll recover. It's likely she will have some weakness on her right and difficulty with fine motor control in that hand for the rest of her life. Vision we are expecting to correct over time (she's lost the ability to focus on objects - much like a newborn)

That said, physio have been (in their words) speechless with the speed of her progress in the last 3 weeks, and we are only a month or so post-op, so we are remaining hopeful and not striking anything off just yet. She has been unwaveringly determined throughout it all and is constantly pushing herself to try the things she finds hardest. She's honestly been utterly incredible. I didn't know it was possible to be this proud of someone. She's a total superstar![/quote]
Wow. What a lot for such a young child to go through and you as parents too. It sounds as if she's doing brilliantly. Your pride and love for her shine through! She's lucky to have you!

Hope you get the DLA 🤞

Have you spoken to your twins' hv? My dd isn't technically due for the 2yo nursery funding til next Sept, but my hv strongly intimated she might be able to get it for her earlier. It could be worth asking to see if any strings can be pulled.

Sounds like your dd is doing brilliantly.

Just to echo to speak to your health visitor. You could also try referring your daughter for an assessment by children's social care disability team to access short breaks for her and they may also be able to access early years provision for your twins. It is worth a try.

Good luck with the DLA claim, OP.

I'm helping someone with one for her young DC at the moment (for a different medical condition). I've found MN very helpful, especially posters like Babyroobs.