Hi my daughter has just been diagnosed with heart failure and cardiomyopathy along with suspected blood clots. Struggling to get my head around all of this. She is a single parent to a very young child living with myself and husband. What help can we get ? Where do we start? I am working but cannot as she needs help but financially this leaves us vulnerable. Any advice would be great
Thankyou
I’m sorry to hear you’ve found yourself in this position. I’m on the BHF board for my own health, but am a single dad to a teenager with complex, life limiting needs, and gave up work to care for her full time about 6 years ago, so I do have a bit of experience that may be of use to you.
For both yourself and your daughter, using a calculator like the Turn 2 Us benefits calculator will give you a good indication of what you’re entitled to both in terms of the benefits you’re eligible for, and also the amount that will translate to in your bank account. There are several benefits calculators available, all free of charge, but the Turn2Us one is the one I’m most familiar with personally and got on well with:
benefits-calculator.turn2us...
To give you a crash course in the meantime, though, welfare support for disability and those caring for disabled people generally falls into two categories: means tested, and non means tested. For the sake of covering everything, I’m going to make some assumptions and talk as if you and your daughter know nothing about the system at all - apologies if some or all of this is known to you as a result.
There is financial support available, but it can take a while to get things organised, and it will depend to some extent on your daughter’s circumstances and how her condition effects her. Means tested benefits are benefits like ESA, Jobseeker’s Allowance, and housing benefit, or universal credit if you live in an area where UC has been rolled out. Carer’s allowance is not means tested, but there is a cap on how much you can earn each week and still receive payments, which ai talk about in a minute. Regardless of why you’re claiming them, whether you receive a means tested benefit and how much you receive is dependent on the income you have coming in, and for some of them, the income of any partner you have living at the same address. It also usually includes savings and assets like a second property, with any amount over £16k generally meaning you’ll be ineligible. Non means tested benefits are things like PIP, which is awarded to someone with a disability on the basis of how it effects them day to day. Because it’s not means tested and it’s intended to cover the additional costs that arise from being disabled, a disabled person can be awarded PIP regardless of their savings or income.
Assuming your daughter is not working, and not currently receiving statutory sick pay from an employer, she needs to make a claim for benefits from the DWP. Depending on where you are, this will usually either be universal credit, or ESA, but the calculator I linked to will answer that. Within her benefits, she will also receive money towards the needs and care of her child. If your daughter is currently receiving sick pay, she can still apply for means tested benefits, but any sick pay will be considered when her income is looked at, and it may well effect her eligibility depending on whether she only receives SSP or if she’s receiving occupational sick pay. Again, the calculator will reflect that. In addition to applying for ESA/UC, I would strongly advise she looks at applying for PIP, assuming her health causes her issues day to day with looking after herself and her daughter. Without being in receipt of PIP, the welfare support options for you as a carer are going to be non-existent. PIP has two components, the first being daily care, the other being mobility. The forms are long, not fun, and there is a high chance of being turned down, even if eligible, but it’s a necessary evil, and 75% of all appeals are upheld in the applicant’s favour. I would also strongly advise getting support filling in the forms, and citizens advice can be a good, first port of call for that. The wording used is as important - if not more so - than what you actually say, and your daughter needs to fill it in as if she’s having her worst day.
Once your daughter is receiving PIP, that then opens the door for you to look at carer’s allowance and your own financial situation. Your husband’s income won’t be taken into account for carers allowance, nor will any savings, but there is a cap on earnings. To receive CA, which is £67 odds a week for the 21-22 financial year, you have to provide at least 35 hours of care a week to someone receiving the care component of PIP, and earn less than £128 a week after deductions. If you’re of working age, CA counts towards your national insurance for pension purposes, so you won’t lose out that way. What other financial support you’re entitled to is then going to be dependent on your joint income with your husband, any savings, and personal circumstances. There is a possibility that you may not be entitled to anything else depending on that, but it could be that you’re eligible for some degree of housing benefit, Income Support, council tax benefit, or universal credit which is designed to replace all of those kinds of ‘legacy’ benefit with one payment each month. This is where a benefits calculator really comes into its own, because it will be able to give you a good idea of the likely financial reality of going part time or giving up work completely.
Once the benefits are up and running, there are other additional elements that can come into play, like receipt of free school meals going forward for your grandchild, being able to reclaim transport costs to and from hospital appointments (both for your daughter and you, depending on benefits awarded), free prescriptions, as well as payments that are available to help heat the house if someone disabled lives with you. These are all dependent on what benefits you/your daughter receive and personal circumstances, but may well be applicable.
I really hope some of that is useful and wish you luck. Please feel free to ask questions if you have any; I’ll do my best to answer them or else signpost you to somewhere that can.
Thank you so much for your reply .
Hi Charlie G's post mentions all benefits available, I had cardiomyopathy and severe heart failure, I was awarded PIP at the highest level in which the mobility element allows you to get a mobility car and you also automatically qualify for a blue badge and also you don't pay road tax, which is such a help, I also get ESA and because I am in what they call a support group I get the highest amount,as I will never be able to work again, I don't have to go for any assessments either, the ESA is means tested but does not take capital in to account just earnings, I have a small private pension, as Charlie says definitely seek help with the forms I would never have got anything if I had done my own, I got help from my local council advisory service, I am in Scotland, the citizens advice bureau can also help, good luck with the benefits, take care char
Thank you for you reply .
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