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?