do i have to take a days holiday for childs hospital visits?

iamana1ias

stolt wrote: »

shame that my job isnt really geared towards working at home as that would be ideal for me, neiher is time the whole office opens at set times and there is no changing that.

by the sounds of it you wouldn't actually be working from home though

longhotbath

Hi stolt, I dont know if you have contacted them, but arthritis care have a section for children, and their parents http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Arthritisinchildren,

also contact a family will have information on raising a child with a medical condition, and there are local organisations that can put you in touch with other families if you would like to do that. ( I have a group of friends whose children have the same condition as my son - it really, really helps, as I have other people to bounce ideas off, ask for advice, hugs, and general understanding that if I cancel something at short notice and forgot to ring, it isnt me being incredibly rude...)

For holidays - we went away alot at weekends - Travelodge are having another sale next week. We are doing our homework first, and will set the alarm early as there are a few places we would love to go to.

For the school hols, day trips with your wife taking the children. My father never wanted to go on holiday so mum took us all over the place by coach trip. It was fantastic, and we saw so much ....

Having had ds1 our priorities have changed but we cram loads into life - often having to think outside the box, and plan along way in advance, but we try to make life as 'normal' as possible for all 3 children.

Best wishes, LHB

space_rider

stolt wrote: »

Thanks for the replies, i'll guess it easier for me to take them as holidays then as i cant afford to not have the money as i'm the only one that works. the clinics are easier to change but great ormand street isn't so and when we tried to change one before they were alittle funny over it saying that if you miss this appointment then there isn't another for several months, obviously I don't want to risk that when our youngest isnt too well. Also Great Ormand Street is a good 1.30hrs drive and then after the appointment its normally a case of waiting for blood tests etc and case study advisers to sit with her so its not normally that short of day up there. Our other two still have to go to school so we ask other mums to help collect them etc. Its fine i thought i'd ask before making a fool of myself with the boss I'll just continue with the way things are.

thanks for everyones replies, space rider I don't suppose you can remember what drug they wanted to put your daughter on? wasn't enbral by anychance?

Hi Stolt, to reduce waiting times for blood tests I always put the cream on my daughter when I leave the house and then by the time we`ve waited her arm is numb enough for the blood tests. That can cut about an hour off our time!

They wanted to put my daughter on cyclophosphamide. The side effects are very similar to chemo drugs and I really didn`t want to put her through that even though the pain was really bad. It could also destroy her ovaries and I didn`t want to say yes to something that could ruin her chance of having children. In the summer there was talk of putting her on rituximab which is a very expensive drug and it hasn`t been used for that long. She is doing much better with a high dose of azathioprine and also prednisolone. If that stops working then I think the next course of action would be the rituximab which is what is recommended for my daughters arthritis in the same way that enbrel is recommended for your daughter as they haven`t responded to the methotextrate.

System

my company has told me that parental leave would not be granted to look after my disabled dd but i was told its for things like " once in a life time holidays " someone at another branch was getting time off over christmas to go to Australia but i wasnt allowed time off to look after dd !

molerat

Get them to read this then http://www.businesslink.gov.uk/bdotg/action/detail?r.s=sc&r.l1=1073858787&r.lc=en&r.l3=1080898069&r.l2=1080898061&r.i=1080909865&type=RESOURCES&itemId=1080910071&r.t=RESOURCES and this http://www.cafamily.org.uk/families/rightsandentitlements/working/rightsinwork.html

stolt

thanks you for al the repsonses, space rider my wife always applis the cream herself but we find that they say it akes about a hour to take affect we could be sitting there (southend hospital) for upto two hours just for blood tests, GOSH has been good mostly but we did have a really long wait once which was really stressful for our daughter.

Our daughter is alreayd on prednisolone aswell, its taken 6Months to get here, i just wish that we had this 6months ago today shes been really bad, we went out yesterday just looking round some shops and she walked fr about 30mins but then wanted the pushchair and has been bad today, shes been wanting to play with my other two daughters but at once stage i walked into the kitchena nd she took it upon herself to crawl along the tiles into the hallway before she told me she couldnt walk. I just want to see the person that makes the decison on if she can have it, i'll show them her and they will have no doubt about it!

I need to read up on enbral, but he hates the injections so now its two a week, i wish i could take them for her.

stolt

molerat wrote: »

Get them to read this then http://www.businesslink.gov.uk/bdotg/action/detail?r.s=sc&r.l1=1073858787&r.lc=en&r.l3=1080898069&r.l2=1080898061&r.i=1080909865&type=RESOURCES&itemId=1080910071&r.t=RESOURCES and this http://www.cafamily.org.uk/families/rightsandentitlements/working/rightsinwork.html

thanks for the links, i think the problem is that we havent regstered her as diabled, i cling to a small glimmer of hope that she will get better.

space_rider

Hi Stolt. My daughter started off with methotextrate tablets which didn't work. We then spent weeks at a time with methylprednisolone into her vein 3 times a week. She then changed to injection meth to no avail. I guess they have to start cheaper and drugs that have fewer side effects first. I too wish they had just put her on drugs she's on now. It all came to a head this time last year as pain was so bad she was on morphine after other pain killers didn't work.

sheeps68

stolt wrote: »

thanks for the links, i think the problem is that we havent regstered her as diabled, i cling to a small glimmer of hope that she will get better.

Why not speak to hospital and see if you can speak to Welfare Rights Worker they may have some ideas. Also I would seriously consider trying for DLA and getting WR to assist in this. Its not about her being disabled but being aqble to provide for the extra needs she has eg mobility. After all you can always cancel your claim should that cure / treatment come to your family. I personally dream of being able to cancel my claim but until that day comes I use it to pay towards the extra needs and costs eg only able to work 4 days and having cabs etc to allow me to live to the fullest I can.

space_rider

Stolt, forgot to say you need to claim for DLA as your daughter has more needs and needs more help than a "normal" child her age. My daughter with the vasculitis gets high rate mobility as she can't walk far without pain.

My other daughter was assessed by the occupational health department at the hospital and she has the mclaren major disabled childs buggy provided by them.