Is there any help for parents with a sick child?

[Tamsin72]

Hi all. I wonder if any of you fab mumsnetters can give me your opinion or point me in the right direction please?

My daughter, aged 5, was diagnosed with Juvenile Idiopathic Arthritis last April and recently had a severe bout of Uveitis which has damaged the sight in her right eye. She's been pretty ill over the last year and I've been very disturbed by the lack of support and help there is for families in our situation. My DH and I both work full time. His employer gives him whatever time he needs to go to hospital appointments, my employer has made me take annual leave or unpaid leave. The costs of going to hospital are huge, the petrol and parking alone cost us a lot of money as the hospital is an hour's drive. We also have our son to care for. So the result has been that in the last 12 months I've had one week off as leave, the rest taken for hospital appointments. We are seriously broke with all the expenses of hospital visits and it's not likely to change soon. Then there is the impact on the family's emotional well-being - I'm on anti depressants and we are just so lucky we have a great bunch of friends who can help look after our son when we are away for operations and appointments. Now I'm not one to whine (although you may not believe me after this!) but I really do believe there must be some way to help parents in our situation? for example if you get statutory sick pay for yourself, why can't you get it if you are the carer of a seriously ill child? If you are parenting a sick child, where can you get emotional and financial support? Parenting is a tough enough job but if you add into that a sick child, why is there no support out there for those families? Does anyone else agree?

Hi, I can't help but I sympathise. It upsets me too there isn't any support as such apart from the appointments we attend. My son and daughter have chronic illness, and my other son has mental health problems , I often feel totally exhausted fighting their corner all the time .

Is just like to add I had to out my career to one side and have zero support financially, it's tough

You can apply for dla and maybe carers allowance?
Dla for her eyes I would say.
Google it.

DLA for her would enable you to claim Carer's Allowance, increased child tax credits and still earn up to £100/week I think.

We had this situation - I dropped to PT & claim DLA which goes a good way to helping with costs of parking etc. It's not perfect but it's a lot better than when we were where you are.

I ended up being v vocal about the fact we were struggling. The HV came round and had some helpful suggestions and put me in touch with HomeStart.

Search for relevant charities, they are v helpful and stop you feeling so alone.

Hope things get better soon.

You only get carers if you're on the middle level of DLA.

My ds had hypertension kidney disease and heart problems and in afraid there is no way we could get dla. Lots if parents have sick children who have to take medicine and suffer and have to go to hospital every 3 months and more time off school etc, who don't have any help whatsoever

Apply for dla ASAP. It can be back date to the time of application.

IJA affects mobility and the rules around DLA ask for care to be given over and above that of a child of the same age. So if sight problems and mobility and care (getting up at night to reposition, applying night splints or day splints etc) are an issue DLA should be awarded. This at least should help with parking and hospital visits. It's also an ongoing condition which doesn't usually just get better but fluctuates.

It might allow for one parent to go part time

And if the parent has a disabled child they should get allowance for hospital visits. Easier to obtain if in receipt of DLA

definitely apply for DLA, then you can look in to any other financial benefits you may be entitled to.
Things like child tax credits can be increased based on the DLA level awarded.
As far as emotional support (and useful practical info) does your county have a parent or family carer network?
If you don't mind saying which county you are in someone may be able to give you more specific advice.

Also if you inform your employer that you have a child with a chronic condition or disability they must allow you flexibility & time off fot appointments etc, sadly it doesn't say they have to pay you.

when applying for dla, use online help forums for your daughters condition to get advice on what to put. it makes a big difference.
took us years to realise we could claim!

Any recent letter from your hospital appointments - Our consultants always write a report type overveiw is very good for applying for DLA - also there is usually a comunity fund that can help with travel costs etc(can't remeber it's exact name as i've never used it, but had no idea it exsisted untill our comunity nurse told me and gave me the forms to register)
I'm sure there must be some legislation somewhere about employers allowing time off/ felixble working hours when caring for a sick child, if you earn under the threash hold you may be entitled to careers allowence too?
A blue badge should emimiate parking costs at hospitals & you don't have to be recieving DLA to get one (i think)

Hi everyone, thank you all for your messages of advice and support! I will start looking into DLA, but I just hadn't thought we would qualify because I wasn't sure that dd is sufficiently disabled? My employer would give me up to 5 days unpaid leave, but I can't afford to take unpaid leave :0( We did join CCAA (a charity for kids with arthritis) and asked for a parent to contact us but they haven't and that was months ago. Anyways, thanks again all of you.

use the cerebra guide - somewont apply but some will. www.cerebra.org.uk/sitecollectiondocuments/books/dla_guide.pdf

disability is deifned as a chronic condition impacting on day to day life. lsit every minute you spend on her care above and beyond a typical child - including medications etcetc

ask a good friend to point out to you what you do for dd that this friend does not do for same age child . or borrow a typical child for a day for comparison

From what I cab gather there are three rates of DLA and they decide which rate you qualify for. At the higher rate you qualify for a mobility vehicle.
We had help filling ours out, and we were advised to put a possible worst case scenario in each instance when you're filling it out.
Is there anyone at the hospital who could advise you?
The DLA forms are quite complicated and I'm so glad we had someone to help out. We were also told you can claim for it regardless of income, savings etc.
Could citizens advice be any use? Good luck.

Lovely
there's 2 different components and of each there's 3 rates.
care comp is split into 3 and mobility is 3 if you qualify for high rate you get either the money or the car

Mobility is split into two not three rates.
Care is three rates.
I agree with the help filling in the forms. There is an art to it (I have a life- time award) and have has similar eye problems linked to Crohn's disease.

Sorry. I was almost right

Have you asked to go on the CCAA family support weekend in July? Lots of practical and emotional advice from parents who've been there before (& now have grown kids but continue to support and run the charity). There are also other supports depending on where you live. Your clinical nurse specialist should have some info for you. Good luck and hope it gets better soon.