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Parenting a sick child - what help is there?

(8 Posts)
Tamsin72 Fri 21-Mar-14 15:13:50

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. 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?

MistletoeBUTNOwine Fri 21-Mar-14 15:16:48

I agree with you, but no idea what help if any is available.
Hope someone will come along with some good news thanks

NorthEasterlyGale Fri 21-Mar-14 15:27:36

Afraid I know less than nowt about this, so probably not much help, but first thought I've had is whether you'd be eligible for DLA?

LINKY

thatwouldbeanecumenicalmatter Fri 21-Mar-14 16:43:23

Sorry no help here. DS2 has ongoing health issue which is being investigated. I was made redundant before he was ill and have been a sahm since as the hospital stays, appointments and general illnesses he picks up due to low immune system is frequent and unpredictable. We also get little/no help from family so the buck stops with me. I totally sympathise - I can't even begin to imagine how difficult it is with working ft too thanks

It might be worth you reposting under children's health as I know there is a good community of parents there who are very knowledgeable, kind and supportive.

HallieGirl Fri 21-Mar-14 20:30:28

Sorry I don't know myself - but have you tried speaking to the charity Contact a Family. They offer advice to parents with children who have special needs.

Twunk Fri 21-Mar-14 20:46:55

I'm not in the uk but my son has cancer and I know that he would be eligible for DLA and a blue badge. Agree ask in children's health.

Tamsin72 Mon 24-Mar-14 12:03:59

Thanks everyone! will try under childrens health. I'm not sure we'd get DLA as her mobility is so variable?

Twunk Mon 24-Mar-14 16:51:07

Tbh it is with leukaemia too.

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