# Do you think preemie families should be given financial help?



## AP

Looking back over my pregnancy i realise that my health in pregnancy grant had vanished before I even seen it had hit my bank. We used up so much money on petrol, hospital food, car parking, and I lost out on a lot of wages. I only get standard maternity pay, the company don't give me any more than that. I'm not even entitled to the Sure Start Grant either.

Do you think in future premature babies should be given more funding to help parents whilst baby is in neonatal?


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## premmiemum123

Absolutely...we spent a fortune as you did and I too had to take early Mat leave which means I hv to go back in Jan as I am the main breadwinner. Not fair as I feel like I have only just got her home.
I believe Bliss are campaigning for Mat leave to start on your EDD as opposed to the actual birth date of your premature LO. For us it is too late but hopefully good news for future mums in this position.


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## Marleysgirl

I'd agree too.

We did get free hospital parking after a few days. We weren't told about it by any member of staff but when the parking prices went up on 1st October, we spotted a tiny clause on the printed carpark price-list that parents of children in Intensive Care get free parking passes. They lasted a month so we had one for October, and - whoops - we haven't yet handed back November's!

As we had to travel by public transport for the first six weeks (post c/s), it was costing the two of us a small fortune for train and bus. We couldn't claim DWP assistance with travel as neither of us claimed appropriate benefits (eg JSA). So we asked for help at the hospital, and the NICU Social Worker put us in touch with The Family Fund who provide grants for extra expenses associated with disabled children - she argued that, with Andrew being prem and in NICU, at that stage we didn't know whether he would be disabled or not. And our grant application was successful, we got enough money to cover travel expenses for September and October. 

Towards the end when our visits escalated from a brief 2hr afternoon to my taking up 12hr residency on the ward, I was given access to the Parents Kitchen (by the rooming-in rooms) so that I could make myself coffee and heat up a packed lunch I'd brought in.

Once we arrived home, at the first support visit, our Neonatal Outreach Nurse asked whether we needed any premmie clothes for Andrew (i.e. did we have sufficient clothes small enough) as they can help with second-hand clothes, apparently. I didn't need this, thanks to some wonderful internet Fairies, but I must remember to give them Andrew's clothes when he grows out of them.


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## AP

wow marleysgirl, you were really looked after!

our car parking was a reduced rate of three pounds per day, but it still tallied up.

i did spend a week in hospital which helped.

i think thats great you have had some help. i did consider applying for some carers allowance as i dont want to go back to work yet. it wasnt my intention but lex may develop cerebal palsy and i know the first two to three years are vital in development so i want to do all i can. not sure if i'd get anything though.


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## nkbapbt

I agree and disagree....this is awful of me...but there are certain parents I would hate to see given help, but how could single them out?? I saw parents who were on their second set of preemie twins born early due to drugs. And that was very common there...Im not really sure they should be given anymore help. I know that's awful and you may think Im awful for it. But that couple put their babies lives at risk and actually ending up giving RSV to one of the babies who died from it. :cry:

They would come to the hospital all sick and sit in the waiting room with other grieving parents, possibly getting them sick..and the NICU could do nothing. 

I know how horrible I sound saying that some families just don't deserve the extra help...and other do FOR SURE!

But it's just how I feel. :blush:

And that being all said...this couple was given EVERYTHING...housing, food vouchers and bus fare. 

But the families that were there 24/7 and well off, didn't get anything. I just feel that's backwards. I see and read about families everyday loosing their homes and life savings from paying medical bills. It's not like anyone chose this for themselves. 

Im sorry again for being harsh. Its just really backwards in my eyes. Here, not everywhere of course!


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## Foogirl

nkbapbt said:


> I know how horrible I sound saying that some families just don't deserve the extra help...and other do FOR SURE!
> 
> But it's just how I feel. :blush:
> 
> And that being all said...this couple was given EVERYTHING...housing, food vouchers and bus fare.
> 
> But the families that were there 24/7 and well off, didn't get anything. I just feel that's backwards. I see and read about families everyday loosing their homes and life savings from paying medical bills. It's not like anyone chose this for themselves.
> 
> Im sorry again for being harsh. Its just really backwards in my eyes. Here, not everywhere of course!

Sadly that's the way the system works. The woman in the bed next to me was talking on the phone to her partner's mother and complaiing that he had brought in a rock(?) of heroin for them to smoke to celebrate and how she was worried he was going to take her "baby money" and if he did, she wouldn't have enough money left in her giro to get a new pair of trainers.

Her bed was surrounded by her giro mates gifts for her baby and they would come in in their Ugg(ly) boots and burbery jackets, she's dressed head to toe in Gap (as was her baby) and I'm sitting there in Primark jammas.

Unfortunately, these women are the ones who get all the benefits anyway. I would suggest that any further benefit for parents of premature babies could be available to those who are not already claiming all the other benefits.

Whenever I dare to complain, I am told, as my husband and I are good wage earners, we don't _need_ the money and don't deserve it. Silly us for going out and getting a university education which led to great careers.

Never mind that we are now down to one wage and I have no choice but to return to work. The government doesn't think I should be given anything to encourage me to stay at home with my child. But they'll happily subsidise someone else to look after her.:wacko:

On the premature thing, I guess the travelling was expensive and the food in the hospital canteen was extortionate - and there were few alternative options. A parents kitchen would have been useful. I did hear other parents being asked if they were claiming back their travelling expenses but I assume this is only for low income parents. I fouund out at that time there is a free shuttle bus. That kind of information would have been useful. Parking at Stirling was free, there just wasn't enough of it.

I was very annoyed about the maternity leave having to start when she was born. For the first month, I could only visit the hospital once a day when my husband came home and at any rate, when she was in the incubator, there was no point being there for any great length of time. I offered to work from home for my employer but was told I wasn't allowed to, my leave would have to start then. I also had accrued holidays which I wont get paid for until the end of the year. It would have been so much better for me to continue to work, then take 3 weeks holidays, by which time we would have been closer to her due date. Certainly it would have taken me to when my maternity leave was due to start anyway. I don't want for her to start nursery at 9 months corrected age, I want her to start at 1 year. I may be able to negotiate a period of unpaid leave, which we have budgeted for, but it would be better if this didn't rely on the goodwill of my boss.

Financially it wasn't any kind of struggle for us and I wouldn't think there should have been any paid benefit. But I do understand there are some more middle income families for whom it would have been more difficult and perhaps this should be taken into account.


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## nkbapbt

I think it's terrible that maternity benefits start from when the baby is born in the case of NICU babies. I think it should start from when they come home and there should be some other kind of benefits for beforehand. 

My hubby is my all means "well employed" and I am a stay at home mom now...we own our own place, Im college educated...we do not want for anything. That being said, we also do not have huge savings accounts...and it was rough at the beginning and even now sometimes. 

I also think that maybe parents of preemies/NICU babies should be able to apply for some kind of funding maybe? Make it the governments choice, but then again...the same types of people who don't deserve would get it. 

Its so backwards how this crap works!

There were several drug addicted babies in the NICU, the mom's outside smoking before they pumped (even though there were signs EVERWHERE saying no smoking)....and even their family members would come and take over the waiting/sitting area so basically no one else could sit in there. Like my family. It was frustrating for everyone including the staff.


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## Aidedhoney

Sorry for crashing ladies, i think its a very difficult one, My ALex spent 5wks in between NICU and a cardiac unit (he wasnt prem) and the things that go on are just mind boggling, as already said by others in the unit Alex was in there were at least 2 drug dependent babies whos parents were on more than one occasion overheard saying "the only reason that they were there visiting was because they got paid" WTF!!!!!!

Here was me sat there sobbing my heart out my baby was poorly and i had done everything during my pregnancy to ensure i ate healthy etc etc i didnt purposly(sp) take substances that would/could make my baby poorly.

My NICU was 52 miles from home OH had to drive 100mile round trip every day to see Alex and I, we were then trasferred 160miles round trip from home. OH was there as often as he could be but as he is self employed if he didnt work we had no income.
We got no assistance not even with car parking until the day before transfer we were told that we could have been parking free bit late as we were getting moved the next day.

Once we were moved i was put up in Ronald Macdonald which we did make a donation to after discharge and we continue to think up a way of rasing funds for the ward Alex was in.

OH and i got no finiancial support at all while in hospital but as long as Alex was ok i wasnt really bothered. We are lucky enough that we dont have any huge money worries as such but been in hospital for a long period of time is very expensive.

I think a lot of it comes down to lack of information no one is going to tell you that you are entiteled to claim back parking etc etc.
I think the whole system is wrong there should be more help out there for people who are visiting/looking after any child with needs be it due to preamature birth or other factors.

Its a very grey area i was lucky i was only 5weeks in hospital i know that a lot of you ladies are in for 10weeks plus.

Sorry for crashing x


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## Marleysgirl

Further to the comments about the starting of maternity leave ...

How about paternity leave? The dads normally need a short period of leave when the baby is born, to support the Mum and possibly look after other children while Mum is in hospital. But then they should perhaps get a second normal period of leave when a preemie baby comes home from SCBU. 

Just a thought.


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## nkbapbt

Very good point Marleysgirl.


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## premmiemum123

Excellent point Marleysgirl. The dads get forgotten about...I am guilty of that. 
My OH was given a weeks compassionate leave when she was born and then deferred his paternity until EMily came home. His employer was great in that respect. They handled his situation with compassion. My employer started my Mat leave straight away, saved them loads of cash apparently...no compassion there then...


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## asacia

I'm not sure what to think about this. (Hope you don't mind me posting, as I've not been in your situation, am just very opinionated!).

While I think it must be finacially (and otherwise) draining to have a premature/sick baby, I do think more planning should be undertaken by everyone when considering having a baby. I know most people don't think about the worse case scenarios, and I think more people should think about how they'd cope if they couldn't return to work etc.

I don't think benefits should be given on moral entitlement, just actual eligibility. It is easy to judge a mother who harms her unborn baby by taking drugs, but in actual fact it is a lot more complicated than that. Many women eat soft cheeses, drink small amounts of alcohol, take medications for morning sickness, all with risk. Drug/alcohol abuse might have much more awful consequences, but some would argue it isn't a choice, and isn't done out of malice, or ever lack of care. Until you've lived with addiction, it is hard to understand the guilt, shame, pain and remorse someone feels. I wouldn't withdraw or limit money because of addiction.

Does the parental leave scheme apply? Perhaps the four week unpaid leave someone can take could be increased. 

I think I'd prefer to see increased facilities (more parents rooms, more qualified breastfeeding consultants) than funds direct to parents.

Tough one!


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## AP

Foogirl said:


> Her bed was surrounded by her giro mates gifts for her baby and they would come in in their Ugg(ly) boots and burbery jackets, she's dressed head to toe in Gap (as was her baby) and I'm sitting there in Primark jammas.

:rofl: chavvys.......

What a screwed up bint! And if I heard that I would have said something. Stuff getting a black eye for it. I remember a guy who literally hid behind the incubator on his phone. I understand that mobile phones dont affect things as such these days, but i wasnt amused. I didnt know what he was doing until OH explained, and I honestley waited for him to do it again so i could rip him to shreds. 

*'MON THE PRIMARK*, by the way!

I understand the flip side now. Its a shame, I guess you just cant choose, can you? Perhaps hospitals should have a standard no fee parking, rather than all hospitals being different, and special rates at canteens?

I think the thing that pisses me off is look at this - my 16 yr old cousin got pregnant intentionally to 'keep' her man and get a council house. Indeed she did get that, and plenty of other government handouts. 

Shes never worked a day in her llife, never ever intended to, believe me. She sits at home, smokes all day, the guy takes drugs and the government pays for everythin.

Whereas I worked, had my baby early, spent over the odds trying to get to and fro the hospital, and missed out on wages, when I 'could' have been potentially working.

the worlds not fair, seriously!


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## Foogirl

sb22 said:


> :rofl: chavvys.......

:rofl: see and I was sooooo careful not to use that word - but yeah, you got it!



sb22 said:


> *'MON THE PRIMARK*, by the way!

:thumbup: Much cheapness for baby clothes and slouchy house attire!



sb22 said:


> Perhaps hospitals should have a standard no fee parking, rather than all hospitals being different, and special rates at canteens?

Across Scotland, all NHS hospitals have free parking now, with the exception of those PFI/PPP hospitals which have prior agreements with those who built and funded the hospitals. They have been told to reduce costs though. ERI used to be over a tenner a day and now (I think) it is cheaper than that.



sb22 said:


> the worlds not fair, seriously!

Yeah. Sucks doesn't it. But life aint fair and at least we can congratulate ourselves on our achievements and have pride. We can also be sure our children will know the value of hard work and responsibility, rather than their only achievement being managing to master the benefits system.

(No mean feat BTW. I often think if those people applied themselves they'd actually do quite well in business)



asacia said:


> While I think it must be finacially (and otherwise) draining to have a premature/sick baby, I do think more planning should be undertaken by everyone when considering having a baby. I know most people don't think about the worse case scenarios, and I think more people should think about how they'd cope if they couldn't return to work etc.

This may be a little unfair. We did plan. I spent the first 3 years of our married life, as we were trying for a child, scrimping and saving every penny as well as taking on additional work, doing overtime and looking at our finances to see where we could cut back. I made sure we could afford to drop one salary for at least a year and we spent frugally in buying stuff for Abby (with the exception of a rather snazzy M&P highchair we paid waaaaay more than we needed to:blush:) We didn't splash out on the best of everything.

We've been lucky that we both still have a job. If Mr Foo had been made redundant, we would have struggled. We would have coped and I would have gone back to work sooner, but sometimes external forces outwith a person's control can throw even the best planning out of the window. The fact Abby was 11 weeks early has turned what would have been a fairly comfortable year into one where we have to think twice because 12 months has become 15. We will manage because we have planned, but that doesn't mean we couldn't do with a little help. Thankfully I've been able to get some bonus money, claiming things back off BUPA that I hadn't known I was entitled to, a nice wee tax rebate came along too.




asacia said:


> Many women eat soft cheeses, drink small amounts of alcohol, take medications for morning sickness, all with risk. Drug/alcohol abuse might have much more awful consequences, but some would argue it isn't a choice, and isn't done out of malice, or ever lack of care. Until you've lived with addiction, it is hard to understand the guilt, shame, pain and remorse someone feels. I wouldn't withdraw or limit money because of addiction.

I guess this is the same argument about where you draw the line with treatment on the NHS. Smokers, drinkers and the overweight are the usual targets. It is a slippery slope if care is dependent on your lifestyle (other than for sound medical reasons) I suppose the same should be true of benefits. However, there does seem to be an avalanche effect where if you are entitled to one, it triggers a whole other raft of benefits. But if you don't, you get nothing. Changing the system to allow those who could do with a little help can access a separate set of benefits would be good. Your average addict would be unlikely to be in that group.



asacia said:


> Does the parental leave scheme apply? Perhaps the four week unpaid leave someone can take could be increased.

It does, but as with all these, how flexible your employer is about taking it is a hit or a miss. It was never designed to be taken as a block of leave 



Marleysgirl said:


> How about paternity leave? The dads normally need a short period of leave when the baby is born, to support the Mum and possibly look after other children while Mum is in hospital. But then they should perhaps get a second normal period of leave when a preemie baby comes home from SCBU.

Mr Foo's employer has been brilliant. He does do flexitime anyway, but there are core hours where he must be in the office. He was allowed to disregard the core hours so that he could be at home early enough in the day to take me to the hospital. He was also given a heap of compassionate leave. Basically for a period of about 3 months (since I had been in hospital at 26 weeks) he could come and go as he pleased and they were happy with it. As an IT manager he was able to work alot from home too.

I believe they are looking at changing the system to give couples parental leave and it is up to them to choose how they use it. This system is in place in Sweden and it works really well. Of course, employers are complaining about that too:dohh:


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## Lil-woowoo

Yeah i do think parents with premmie babies should get more financial help. My nephew was born at 24 weeks gestation in a hospital 40 odd miles away from where my sister lives (sadly she does not drive). She never got her health in pregnancy grant(lol not sure if that the correct title, its the £190 payment all pregnant mummys get) becuase she gave birth before she could claim it. Babe is nearly 9 weeks old and she spends all day travelling back and forward to the hospital each day and its costing her a fortune. Her baby is going to be in for a wee while yet. Hes been in 3 different hospitals so far, such a shame for her and her other 2 little ones x x


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## premmiemum123

Lil-woowoo said:


> Yeah i do think parents with premmie babies should get more financial help. My nephew was born at 24 weeks gestation in a hospital 40 odd miles away from where my sister lives (sadly she does not drive). She never got her health in pregnancy grant(lol not sure if that the correct title, its the £190 payment all pregnant mummys get) becuase she gave birth before she could claim it. Babe is nearly 9 weeks old and she spends all day travelling back and forward to the hospital each day and its costing her a fortune. Her baby is going to be in for a wee while yet. Hes been in 3 different hospitals so far, such a shame for her and her other 2 little ones x x



I think you sister should still be able to get the Health in Pregnancy grant, I applied for mine after I gave birth. Your sister should speak to her midwife. You are entitled to it so should claim it, it will help towards her unexpected costs...I hope your sisters LO gets stronger and bigger soon and comes home for xmas...


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## Foogirl

premmiemum123 said:


> I think you sister should still be able to get the Health in Pregnancy grant, I applied for mine after I gave birth. Your sister should speak to her midwife. You are entitled to it so should claim it, it will help towards her unexpected costs...

You have to reach 25 weeks in pregnancy before you can claim. The situation beyond that appears to depend on who you talk to within HMRC. Some who have gone beyond 25 weeks but not gone to term have had their claim rejected. There has been a problem with getting the forms - I didn't have mine before Abby came along at 29 weeks, but the midwife backdated it.

This is one area that needs to be clarified and if it turns out there is no entitlement, that needs to change. Sure the grant is designed to aid healthy pregnancy, to encourage a better diet and exercise, but if you have a premature baby it is equally important that you still keep healthy, and there are these additional expenses which could be helped by the HIP.


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## AP

So why the 25 week limit then? What are HMRC trying to say, that no baby lives before 25 week gestation?

Thats out of order imo, you should still get it!

Foogirl the parking at ERI is £3 per day for neonates parents. Thats where we were


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## Foogirl

sb22 said:


> So why the 25 week limit then? What are HMRC trying to say, that no baby lives before 25 week gestation?

I would think it has something to do with the 24 week limit for abortions. As if they think someone would become pregnant and terminate at 24 weeks, just to get £190 quid.


sb22 said:


> Foogirl the parking at ERI is £3 per day for neonates parents. Thats where we were

That's a pretty good reduction then. But I suppose that isn't much comfort when you are shelling out over twenty quid a week for a couple of months.


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## angelstardust

It's a tough one... My first reaction is why specifically preemies? And how premature do they have to be? I had a 35 and a 33 weeker and a 37 week elective, they all ended up in special care. My DS2 has also been in hospital several times, the longest was almost 2 weeks. 

The thing I found hardest with DS2 and Amber was that I was in hospital before the baby arrived meaning my husband had to take unpaid leave to look after our child/children. Then his paternity leave covered the 2 weeks we were in hospital (8 days with Amber) so I didn't get any help once I got home. 

My idea would be to firstly provide a form of paid leave for fathers to be if their partner has to be admitted to hospital if they already have 'dependants'. Sorry girls, but I can't justify FTB getting it if they have no children needing childcare, they can still work and visit later. 

Free parking should be available in all hospitals for parents. Discount cards for hospital canteens. Hospital transportations costs more easily assessable, especially if baby is moved to a non local hospital. 

Paternity leave extended (either to 4 weeks or I have heard talk of paternity and maternity leaves being combined so that you get a total of so many weeks to split as you wish between the 2). In the case of paternity leave, it can be taken in blocks, so say a few weeks when preemie/sick baby is born, go back to work and some more weeks when the baby gets home. 

Information on grants and charities made easily available. My suggestion would be a councillor of some sort to meet with parents and discuss what help they can get, where they can get it, issue parking/food vouchers, direct them to support networks, explain the whole neonatal lifestyle to them etc. The neonatal nurses do a great job but they are there to look after the babies and so sometimes the needs of the parents are sidelined. 

SB22, regarding carers allowance, you can only claim it if your lo receives middle rate care disability living allowance (or above) and you are working 16 hours or less per week, are not in full time education. It also affects other benefits so don't know how it works with maternity benefits?


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## nkbapbt

I dont think it should be just for preemies what so ever. I think it should be for NICU parents and babies. 

There are all the things you mentioned available to families here, but only certain families. Basically ones who ask, make a stink about it or rightly need it to survive. 

I honestly think a NICU package would be useful, where they give parking passes, vouchers to the hospital food and so on. Even if it only for the first two weeks, and if you are staying over a certain time it should be free period, IMO. And then information about grants, funding and how to secure further help if needed.

I do think fathers should be allowed to get benefits if they chose even if they do not have kids at home to look after, who's to say that a father is anymore ready emotionally to work than a mother is?

I do think that if they take them right away, then it cuts into the benefits later on.

Just my opinion!


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## angelstardust

Sorry I meant fathers couldn't get the 'childcare' benefit when the mother is in hospital before the baby arrives if there are no children at home.


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## Foogirl

angelstardust said:


> Sorry girls, but I can't justify FTB getting it if they have no children needing childcare, they can still work and visit later.

Not quite as simple as that. For some the trip to and from hospital can be a couple of hours. The visiting hours on the wards can be quite inflexible too. Plus, after an emergency c-section, I couldn't drive for 4 weeks and my husband was the only way I could get to the hospital. If I had to wait until he got home from work at his usual time before I could go there, it would have been very late and time with Abby would have been severely limited.

The first occasion I was in hospital with bleeding was when I was in London. 600 miles away. Abby could very easily have been born there, so some kind of leave for him would have been vital.

But it also needs to be taken into consideration the emotional well being for a father in that situation. If Mr Foo had had to return to work in the days following Abby's birth, it would not have been very good for him at all. He saw his wife lose 2 pints of blood right in front of his eyes and then had to endure waiting for the birth and dealing with seeing her in the NNICU. People need to recover from that. Everyone seems to think paternity leave is purely for the benefit of the mother, to give them help etc, but fathers have needs during that time too.


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## angelstardust

Foogirl said:


> angelstardust said:
> 
> 
> Sorry girls, but I can't justify FTB getting it if they have no children needing childcare, they can still work and visit later.
> 
> Not quite as simple as that. For some the trip to and from hospital can be a couple of hours. The visiting hours on the wards can be quite inflexible too. Plus, after an emergency c-section, I couldn't drive for 4 weeks and my husband was the only way I could get to the hospital. If I had to wait until he got home from work at his usual time before I could go there, it would have been very late and time with Abby would have been severely limited.
> 
> The first occasion I was in hospital with bleeding was when I was in London. 600 miles away. Abby could very easily have been born there, so some kind of leave for him would have been vital.
> 
> But it also needs to be taken into consideration the emotional well being for a father in that situation. If Mr Foo had had to return to work in the days following Abby's birth, it would not have been very good for him at all. He saw his wife lose 2 pints of blood right in front of his eyes and then had to endure waiting for the birth and dealing with seeing her in the NNICU. People need to recover from that. Everyone seems to think paternity leave is purely for the benefit of the mother, to give them help etc, but fathers have needs during that time too.Click to expand...

If you read it again, I was referring to the 'benefit' *prior* to the birth of the child. 

Trust me, I fully understand how hard it is for a man to watch his partner fight for her life in front of him as he is firstly shuffled out the way, ignored and then left to stand helpless. 4 years and my own husband is still not fully 'over it'. 

I can't make a distinction between an expectant mother being in hospital and any other wife/husband/child etc being in hospital. So if it came to it then there should be some sort of benefit for anyone who has an immediate dependant in hospital to be allowed some sort of paid leave (but I think there already may be something like this, trying to think of the name, personal leave, crisis leave?), but that then broaches into something beyond maternity/paternity benefits/leave and allowances. Although I suppose leave if you have children could be classed the same way. Hospital benefit maybe?


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## angelstardust

Another thought, have any of you thought about clubbing together to make some 'How to survive NICU' guides for new parents? Make up some leaflets with advice on what charities there are available and how they can help, support groups in your area, what help there is out there? 

We all learn so much after it happens, it would be good to share it. 

Most health care trusts will print off and distribute leaflets like this if you approach them. Get your local MP (or MSP) involved. BLISS may help?

I've taken part in something similar (petitioned parliament and everything) and while it is hard work and can sometimes feel daunting, it is very worthwhile if you make a difference.


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## Foogirl

angelstardust said:


> If you read it again, I was referring to the 'benefit' *prior* to the birth of the child.

 Yes, I was in hospital with bleeding on and off for the 3 weeks prior to the birth. Half that time was 600 miles from home.



angelstardust said:


> Trust me, I fully understand how hard it is for a man to watch his partner fight for her life in front of him as he is firstly shuffled out the way, ignored and then left to stand helpless. 4 years and my own husband is still not fully 'over it'.

Left standing in the corner holding the suitcase......shocking.



angelstardust said:


> I can't make a distinction between an expectant mother being in hospital and any other wife/husband/child etc being in hospital. So if it came to it then there should be some sort of benefit for anyone who has an immediate dependant in hospital to be allowed some sort of paid leave (but I think there already may be something like this, trying to think of the name, personal leave, crisis leave?), but that then broaches into something beyond maternity/paternity benefits/leave and allowances. Although I suppose leave if you have children could be classed the same way. Hospital benefit maybe?

It is sometimes called compassionate leave. The problem is it depends on the goodwill of employers. And many employers just have none.


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## angelstardust

Foogirl said:


> angelstardust said:
> 
> 
> If you read it again, I was referring to the 'benefit' *prior* to the birth of the child.
> 
> Yes, I was in hospital with bleeding on and off for the 3 weeks prior to the birth. Half that time was 600 miles from home.
> 
> 
> 
> angelstardust said:
> 
> 
> Trust me, I fully understand how hard it is for a man to watch his partner fight for her life in front of him as he is firstly shuffled out the way, ignored and then left to stand helpless. 4 years and my own husband is still not fully 'over it'.Click to expand...
> 
> Left standing in the corner holding the suitcase......shocking.
> 
> 
> 
> angelstardust said:
> 
> 
> I can't make a distinction between an expectant mother being in hospital and any other wife/husband/child etc being in hospital. So if it came to it then there should be some sort of benefit for anyone who has an immediate dependant in hospital to be allowed some sort of paid leave (but I think there already may be something like this, trying to think of the name, personal leave, crisis leave?), but that then broaches into something beyond maternity/paternity benefits/leave and allowances. Although I suppose leave if you have children could be classed the same way. Hospital benefit maybe?Click to expand...
> 
> It is sometimes called compassionate leave. The problem is it depends on the goodwill of employers. And many employers just have none.Click to expand...

Me thinks compassionate leave should be revised and made to be fair then :blush: I didn't even know about, kinda heard of it, but that's it. 

Mine was left sitting on a bench as baby was wheeled past then I was wheeled past. :nope: And the doctors barely spoke to him until he yelled 'what the F*** is going on!' when they had cracked open the eclampsia pack and even at that he was asked to leave! So not right at all.


----------



## Foogirl

angelstardust said:


> Mine was left sitting on a bench as baby was wheeled past then I was wheeled past. :nope: And the doctors barely spoke to him until he yelled 'what the F*** is going on!' when they had cracked open the eclampsia pack and even at that he was asked to leave! So not right at all.

This is definitely something they need to revise. My poor poor husband, it breaks my heart to think of him having to go through it. He was rescued fairly quickly with a cup of coffee, but he had no-one talk him through it.


----------



## angelstardust

Foogirl said:


> This is definitely something they need to revise. My poor poor husband, it breaks my heart to think of him having to go through it. He was rescued fairly quickly with a cup of coffee, but he had no-one talk him through it.

I was kept 'asleep' for 3 days so have no idea what went on, I've been told (some back then, some when I got my medical records and more when I fell pregnant with Amber) and it was bad, but he saw it all, he was there watching it all unfold, I can't imagine what it was like. 

As for their de-briefing, they told me I should be dead, my baby should be dead more children would be suicide then left me alone in my room for 2 hours till my husband got there! 

Complete disregard for the emotional and mental well being of the patient, don't think they could do any worse for the patients family!


----------



## Marleysgirl

angelstardust said:


> Information on grants and charities made easily available. My suggestion would be a councillor of some sort to meet with parents and discuss what help they can get, where they can get it, issue parking/food vouchers, direct them to support networks, explain the whole neonatal lifestyle to them etc. The neonatal nurses do a great job but they are there to look after the babies and so sometimes the needs of the parents are sidelined.

Our NICU had a social worker who could provide information on practical things like grants (except she was useless). There was also a phone number for a counsellor pinned up on the wall, but only the one and when I phoned she was on holiday!

It is actually on my list of things to suggest to our NICU (I've been asked whether I'll consider going onto some kind of parents forum). I feel it would be beneficial to have a staff member that does what you list - chat about what help & where, explain the lifestyle and what's expected of parents etc. 

I felt like I was thrown in the deep end with NICU, and having different nurses attending Andrew every day, I couldn't build up any rapport where I could ask stupid questions.


----------



## asacia

angelstardust said:


> I can't make a distinction between an expectant mother being in hospital and any other wife/husband/child etc being in hospital. So if it came to it then there should be some sort of benefit for anyone who has an immediate dependant in hospital to be allowed some sort of paid leave (but I think there already may be something like this, trying to think of the name, personal leave, crisis leave?), but that then broaches into something beyond maternity/paternity benefits/leave and allowances. Although I suppose leave if you have children could be classed the same way. Hospital benefit maybe?

I think that is what I think, that if there are additional benefits for families with a baby in NICU, then what about other dependants? Too many people (mothers, fathers, children, grandparents) spend time in hospital for there to be an additional benefit, I think. It would be nice though, but I don't think it is realistic. 

Also, about the emotional needs of the father, I think that if he is unable to work following a trauma, normal sick pay rules should apply. 

I think that in exceptional circumstances (extended stay in hospital, return from hospital following extended stay) then parental leave should be able to be taken in longer blocks, of up to 4 weeks.

It is hard really, because there is obviously a big need for the family, but there is also limit resources and the needs of businesses to take into account.


----------



## AP

[deleted because I actually cant be bothered. Im not saying we're 'special' or anything. Its just financially draining and hospital fees etc do not help]


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## asacia

Sorry, hope I didn't sound unsympathetic, I didn't mean to. It is tough balancing working with caring responsibilities, in his last job my OH had to take a lot of unpaid time off work to look after me. It isn't possible in his new job to do this and it makes things very hard.


----------



## nkbapbt

Here in Canada, you can get benefits if you are caring for a family member with grave illness. That being said the person you caring for must be in danger of dying within 26 weeks.  I personally think that's bull simply because there are no rules to babies in the NICU, I am sorry to say this but sometimes they cannot tell you if a baby in the NICU will die. 

Morbid I know. But I just think it's messed up.

I think it's a wonderful idea to get pamphlets together to give out about NICU resources for new parents to the NICU.


----------



## Foogirl

premmiemum123 said:


> I think you sister should still be able to get the Health in Pregnancy grant, I applied for mine after I gave birth. Your sister should speak to her midwife. You are entitled to it so should claim it, it will help towards her unexpected costs...I hope your sisters LO gets stronger and bigger soon and comes home for xmas...

After you posted this yesterday, I decided to email HMRC to get an answer. They confirmed that you must still be pregnant when you claim. If you haven't claimed by the time you give birth, you are not entitled.

I know many women are still being given the benefit after a premature birth, but the rules do mean that there is no entitlement. This should be changed I think as even if you aren't pregnant, the additional monies would be very beneficial to those who have babies in NNICU care



asacia said:


> I think that is what I think, that if there are additional benefits for families with a baby in NICU, then what about other dependants? Too many people (mothers, fathers, children, grandparents) spend time in hospital for there to be an additional benefit, I think. It would be nice though, but I don't think it is realistic.

This is a different argument entirely. My father in law had several extended periods in hospital and of course we visited regularly, but *visiting* a sick relative in hospital and *caring* for a baby in the NNICU are two totally different things. Many (indeed most) of us would spend extended periods in the unit, full days are not uncommon. The additional costs of doing this - 2 meals in the hospital canteen, drinks etc soon add up. On top of that mothers are there all day but fathers (who apparently should jump straight back to work) visit later in the day, that makes two trips (sometimes more) a day. The days when I couldn't stay all day, if I had doctors appointments etc, I would be up and down to the hospital 3 or 4 times a day. And this can be for weeks - sometimes months at a time.

Relatives of patients in long term care at hospital _can_ claim travelling expenses and parking. But there are very few situations where a relative will require (or even be allowed to) spend full days at the hospital with a patient.




asacia said:


> Also, about the emotional needs of the father, I think that if he is unable to work following a trauma, normal sick pay rules should apply.

Why is it beyond comprehension that, if we treat pregnancy and maternity differently from sickness for women, we shouldn't do the same for fathers? Talk about a waste of resource. To do this you would need a GP appointment (difficult to get) and a doctors line (which costs to produce) If there was a standard, decent amount of leave for fathers this wouldn't be necessary.



asacia said:


> It is hard really, because there is obviously a big need for the family, but there is also limit resources and the needs of businesses to take into account.

The system in Sweden works fine. Parents are given a number of parental leave days and it is up to the parents how they divvy them up. You don't hear businesses there complaining about the needs of the business. We are just so backward in the UK, because family is the last thing to be given any importance. We have come forward in maternity leave and parental leave somewhat, but not nearly far enough. It is illegal for an employer to put the "needs of the business" over the requirements for maternity. The same should be true for paternity. If employers and employees work together to find a solution, there shouldn't be a problem.


----------



## AP

Foogirl said:


> After you posted this yesterday, I decided to email HMRC to get an answer. They confirmed that you must still be pregnant when you claim. If you haven't claimed by the time you give birth, you are not entitled.

Sodding liars, I didnt even get the form for until at least 3 weeks after Alex was born!!

Besides the form asks you for the due date - no mention of birth date! I guess its down to the midwife. 

Foogirl tell them they are bloody liars! lol!

They dont know if your pregnant or not, as long as the midwife states the expected due date!


----------



## premmiemum123

sb22 said:


> Foogirl said:
> 
> 
> After you posted this yesterday, I decided to email HMRC to get an answer. They confirmed that you must still be pregnant when you claim. If you haven't claimed by the time you give birth, you are not entitled.
> 
> Sodding liars, I didnt even get the form for until at least 3 weeks after Alex was born!!
> 
> Besides the form asks you for the due date - no mention of birth date! I guess its down to the midwife.
> 
> Foogirl tell them they are bloody liars! lol!
> 
> They dont know if your pregnant or not, as long as the midwife states the expected due date!Click to expand...

It is your entitlement and I didn't see anything about still being pregnant. My midwife signed my form and put my original EDD..I claimed 3 weeks after Emily was born...they are liars!


----------



## Foogirl

sb22 said:


> Sodding liars, I didnt even get the form for until at least 3 weeks after Alex was born!!
> 
> Besides the form asks you for the due date - no mention of birth date! I guess its down to the midwife.
> 
> Foogirl tell them they are bloody liars! lol!
> 
> They dont know if your pregnant or not, as long as the midwife states the expected due date!

The speed at which these forms comes out are shocking. I asked for it at 25 weeks but despite repeatedly asking, I never got it. 4 weeks later Abby was born.

They can find out if you have given birth, as it is registered. Also, if you have already submitted your claim for Child Benefit (as I had) they should be able to cross check. Clearly they don't as they still paid my HIP.



premmiemum123 said:


> It is your entitlement and I didn't see anything about still being pregnant. My midwife signed my form and put my original EDD..I claimed 3 weeks after Emily was born...they are liars!

Dinna shoot the messenger!

Their whole response was...


HMRC....the fekkin liars said:

> Thank you for your e-mail on 12 November 2009 regarding Health in Pregnancy Grant (HiPG).
> 
> The grant was introduced on 6th April 2009 and to qualify, women must
> 
> - have a due date on or after 6th April 2009,
> - reached their 25th week of pregnancy,
> - received advice on matters relating to maternal health from a midwife or doctor
> - be resident in the UK,
> - not be subject to immigration control,
> - still be pregnant at the time of their claim.
> 
> 
> I am sorry to hear that you have had your baby so early in your pregnancy.
> 
> Unfortunately, if you did not complete a claim form during your pregnancy then you will not be entitled to the Health in Pregnancy Grant.

The bottom line is, there is no entitlement. The reality is, some women are still being paid the allowance. But some are definitely not.


----------



## Lil-woowoo

Thank you Foogirl for that info. I just noticed your in falkirk, not too far from me i stay in stirling x


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## Foogirl

Lil-woowoo said:


> Thank you Foogirl for that info. I just noticed your in falkirk, not too far from me i stay in stirling x

Yes, I know it well - at least I know the route from here to the hospital!!


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## Lil-woowoo

Could imagine you could do that route with your eyes closed. Unfortunantly my nephew has ended back up in stirling, after being born in RIE and being there for 7 weeks and yorkhill for a week. x


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## bunnyg82

absolutely do. In fact, as I have been following yours and Alex's journey I've often thought how people with babies in nicu should have help. I just about think we can afford to have a baby but I can't imagine how we'd cope having to pay out all of those things you mentioned.


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## honey08

not read other comments and not had a premmie baby but yeh i defo think so,petrol money / babysitting money4 ur other babies n clothes for sure ! also premmie everything,nappies etc x


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## Foogirl

Lil-woowoo said:


> Could imagine you could do that route with your eyes closed. Unfortunantly my nephew has ended back up in stirling, after being born in RIE and being there for 7 weeks and yorkhill for a week. x

Wow, that's quite some journey. Fingers crossed he'll be home soon.



honey08 said:


> not read other comments and not had a premmie baby but yeh i defo think so,petrol money / babysitting money4 ur other babies n clothes for sure ! also premmie everything,nappies etc x

Thankfully nappies and clothing are provided in the hospital, and as a wee bonus, anything left in her cubbyhole when we took her home, we got to take with us as they just throw it away anyway to avoid cross contamination. Luckily the auxilliary had fully stocked her the day before so we got a huge pile of nappies, cotton wool, disposal bags and creams to take away with us.


----------



## premmiemum123

Foogirl said:


> Lil-woowoo said:
> 
> 
> Could imagine you could do that route with your eyes closed. Unfortunantly my nephew has ended back up in stirling, after being born in RIE and being there for 7 weeks and yorkhill for a week. x
> 
> Wow, that's quite some journey. Fingers crossed he'll be home soon.
> 
> 
> 
> honey08 said:
> 
> 
> not read other comments and not had a premmie baby but yeh i defo think so,petrol money / babysitting money4 ur other babies n clothes for sure ! also premmie everything,nappies etc xClick to expand...
> 
> Thankfully nappies and clothing are provided in the hospital, and as a wee bonus, anything left in her cubbyhole when we took her home, we got to take with us as they just throw it away anyway to avoid cross contamination. Luckily the auxilliary had fully stocked her the day before so we got a huge pile of nappies, cotton wool, disposal bags and creams to take away with us.Click to expand...

Agree the hospitals can be quite generous especially when you are leaving. I was allowed to take some milk, everything in Emily's cupboard and they gave me loads of syringes for all her medicines. As for Nappies, cotton wool, cotton buds and wash stuff, we had to supply it. It was free for a week but then we were encouraged to buy our own. I didn't mind though, anything for our little girl...


----------



## Marleysgirl

premmiemum123 said:


> Foogirl said:
> 
> 
> Thankfully nappies and clothing are provided in the hospital, and as a wee bonus, anything left in her cubbyhole when we took her home, we got to take with us as they just throw it away anyway to avoid cross contamination. Luckily the auxilliary had fully stocked her the day before so we got a huge pile of nappies, cotton wool, disposal bags and creams to take away with us.
> 
> Agree the hospitals can be quite generous especially when you are leaving. I was allowed to take some milk, everything in Emily's cupboard and they gave me loads of syringes for all her medicines. As for Nappies, cotton wool, cotton buds and wash stuff, we had to supply it. It was free for a week but then we were encouraged to buy our own. I didn't mind though, anything for our little girl...Click to expand...

This is where a thread such as this gets interesting - "do mothers of premmies need additional financial help?" *It obviously depends on the particular unit* as some require you to supply your own stuff, and others discharge you with freebies!

In ours, all nappies, cotton wool & buds and botty cream were supplied until discharge. There was some clothing available, you could choose whether to use unit clothes or your own (but not a mixture as that was confusing to staff!).

We weren't told about raiding the pre-stocked cot cupboard on discharge, but I wouldn't have bothered anyway as I had tonnes of stuff ready at home.

Syringes were supplied with the discharge medicine.

I saw that babies on formula milk were discharged with some milk, and I've been brought some bottled Nutriprem2 by the outreach midwives (to act as standby). As I was feeding Andrew frozen EBM, they gave me some boxes of the fortifier sachets to use for the first few weeks.


----------



## emspaeth

I don't think that just because you had a preemie you should have be able to get financial support. Some preemies are born and go home 2 or 3 days after birth. I don't think that is a preemie has health problems then yes but I think any baby with on going health problems should get help too!


----------



## x-amy-x

An old thread but ill add my 2p worth

*some* support would be helpful... and not particularly in the shape of cash. Lunch vouchers maybe? It is expensive. Luckily i live close to my baby's unit but its still costing us a fair bit in travel. And once i'm there i very rarely eat. I couldn't afford to. Having a baby in neonatal means that making yourself food at home in advance isn't really high up on the list of priorities. Even 6 weeks on... ive still not managed to get myself into a proper routine. Working on it though!


----------



## Lottie86

Some sort of support would have been good be it help with travel costs, food vouchers etc. 
Before Iona was transferred it was costing me £100 round trip in a taxi to visit her as I couldn't drive due to having had a csection and my OH was back at work, certainly adds up quickly especially on days when I had gone back home and she then took a turn for the worse and I had to get a taxi back in again. 
Whilst my travel costs are now lower as we are living in hospital with Iona we are living on takeaways and microwave meals as that is the only cooking facility we have in the hospital's parents accomodation and it's costing a fortune!


----------



## AP

emspaeth said:


> I don't think that just because you had a preemie you should have be able to get financial support. Some preemies are born and go home 2 or 3 days after birth. I don't think that is a preemie has health problems then yes but I think any baby with on going health problems should get help too!

My intent on this old bumped up thread was regarding preemies who spend weeks and months in neonatal units....


----------



## Foogirl

I think the point, albeit clumsily made was, financial support should be made for parents of any newborn, whether preemie or not, if they spend a prolonged time in hospital. For example, even if Iona had gone full term, Lottie would have faced the same issues during those first weeks in NNICU. I'd have been very cross if Lottie had lost out on any help because of the lack of a "preemie" lable.


----------



## 25weeker

At the time of this thread been written I was pregnant and blissfully unaware of prematurity and all it's complications! :neutral:


----------



## xxClaire_24xx

we were actually really looked after at the hospital if i went in at 10am and was staying til 6pm when Peter came to get me and someone else could collect me from school we had a wee kitchen we could use and there were some sandwiches and biscuits and teas and coffee etc

but tbh there were a few drug addicts babies in nicu and they were getting EVERYTHING paid for them xx


----------



## AP

Such a hard one that Claire. On one hand baby needs that support as does mum I guess, no mother, albeit drugs or whatever, should have to experience NICU.
On the other hand it made me so sad because these parents had no job and freely came and went when they liked to see their baby. My OH had to work though...:( where's the fairness there?....


----------



## Marleysgirl

Ooooh, an old bumped thread ...

I'll add in a little update. I was invited to join the NICU Parents Group at my hospital when Andrew was about 6 months old, and I managed to attend a few meetings before having to give up due to work pressure. I raised the issues about lack of counselling help and lack of information about practical stuff, and as a result of the Group there is now an NICU information pack handed to all new parents, explaining about parking permits, kitchen etc. There is also now a proper lounge & kitchen facilities that all parents can use, not just those rooming-in. So I am glad that I've managed to help newer Mums around here :)


----------



## xxClaire_24xx

AtomicPink said:


> Such a hard one that Claire. On one hand baby needs that support as does mum I guess, no mother, albeit drugs or whatever, should have to experience NICU.
> On the other hand it made me so sad because these parents had no job and freely came and went when they liked to see their baby. My OH had to work though...:( where's the fairness there?....

oh no i def agree i think all babies def deserve the same treatment as each other for sure but what i meant was like you most of them dont work but got paid to go and see their babies when they wanted and like you say our OH had to work xx


----------



## vermeil

hmm here in Quebec I was able to delay the start of the yearlong maternity leave until baby came home. It`s an obscure clause but it was automatically accepted. 

In the four month gap I received health leave (basically what you get if you have to leave work for health reasons) which filled the gap in between. No one doubted when I said there was no way in HECK I would be able to work knowing just how sick my son was....

Being the breadwinner, without the help we would never have made it through. Even with the generous maternity leave (70% of income) all of our savings had melted away when I went back to work when he was 18 months old. 

Here in Quebec on top of that, parents of preemies born 28 weeks or sooner receive the supplement for handicapped children for two years. It`s a good amount and really helped too. The nicu nurses jokingly said the parents were the ones handicapped by the high costs of having a sick baby ;)

And of course all of baby`s nicu stay (which I calculated at over 100000$ had we lived somewhere without health coverage) was free as all healthcare is here. Had we been in the states for example without insurance we would have had to sell the house.

Guess I'll remember all that next time I complain about our high taxes :haha:

edit - just noticed this thread is 3 years old haha! Well perhaps this info can help others in Canada. One thing I remember vividly from the nicu experience was all the dang bureaucracy and paperwork...


----------



## Foogirl

I would love for a similar scheme to be in here, but the law says your maternity leave must start when LO is born. You do have the option of tagging some parental leave on to the end of it, but that is unpaid. Thankfully we could afford to do that, but others can't.

I'm also glad our healthcare is free!


----------



## Marleysgirl

vermeil said:


> hmm here in Quebec I was able to delay the start of the yearlong maternity leave until baby came home. It`s an obscure clause but it was automatically accepted.
> 
> In the four month gap I received health leave (basically what you get if you have to leave work for health reasons) which filled the gap in between. No one doubted when I said there was no way in HECK I would be able to work knowing just how sick my son was....
> 
> Here in Quebec on top of that, parents of preemies born 28 weeks or sooner receive the supplement for handicapped children for two years. It`s a good amount and really helped too. The nicu nurses jokingly said the parents were the ones handicapped by the high costs of having a sick baby ;)




Foogirl said:


> I would love for a similar scheme to be in here, but the law says your maternity leave must start when LO is born. You do have the option of tagging some parental leave on to the end of it, but that is unpaid. Thankfully we could afford to do that, but others can't.

This sounds a fantastic idea - sick leave until your baby leaves NICU, then the maternity leave period starts. 

(And the DLA for <28wk preemies would be good too!)

Perhaps this are measures we should consider campaigning for? Does anybody have any experience of successful campaigning? Is an ePetition perhaps the way to start? What does anyone else think? (Maybe I should start a bespoke thread for this - Vermeil, a link to the Canadian guidance online might be helpful)


----------



## Lottie86

I don't agree about automatic DLA though as DLA is for people who **have** a disability or medical condition meaning they require extra care over and above that of typical baby/child/adult and not just people who *may* develop a disability.


----------



## Foogirl

Lottie86 said:


> I don't agree about automatic DLA though as DLA is for people who **have** a disability or medical condition meaning they require extra care over and above that of typical baby/child/adult and not just people who *may* develop a disability.

I think the argument would be that a child in NNICU and SCBU does require extra care over and above that of a typical child. If not DLA, maybe a "carers allowance" type benefit would be suitable. The costs can be crippling for those already on lower incomes.



Marleysgirl said:


> This sounds a fantastic idea - sick leave until your baby leaves NICU, then the maternity leave period starts.
> 
> (And the DLA for <28wk preemies would be good too!)
> 
> Perhaps this are measures we should consider campaigning for? Does anybody have any experience of successful campaigning? Is an ePetition perhaps the way to start? What does anyone else think? (Maybe I should start a bespoke thread for this - Vermeil, a link to the Canadian guidance online might be helpful)

I'd say Bliss would be a good place to start. I'll have a word with them.


----------



## AP

Lottie86 said:


> I don't agree about automatic DLA though as DLA is for people who **have** a disability or medical condition meaning they require extra care over and above that of typical baby/child/adult and not just people who *may* develop a disability.

I would agree, some preemies (like me) just grow up to be perfectly healthy and fine.


----------



## Lottie86

But no child in hospital qualifies for DLA so why should preemies be different?? TBH in NICU/SCBU the hospital provide *far* more care than the parents do as the nurses are there 24/7 and it is the nurses providing the medical care so I don't think parents should get it as it is not them providing the specialist care that preemies need.


Just my 2p worth :flower:


----------



## Marleysgirl

I wasn't actually thinking while they were on NICU, I was thinking after discharge, if there is an extra care need relating to their extreme prematurity that isn't a specific disability but requires more monitoring than a normal termie ... doesn't matter, I don't want to start an argument.


----------



## AP

Ahhh a debate not arguments ;) we're too nice in this section for that :haha:


----------



## Marleysgirl

You're right, a debate. I thought I was on t'other forum for a minute there!


----------



## Foogirl

Marleysgirl said:


> You're right, a debate. I thought I was on t'other forum for a minute there!

:haha::haha:



Lottie86 said:


> But no child in hospital qualifies for DLA so why should preemies be different?? TBH in NICU/SCBU the hospital provide *far* more care than the parents do as the nurses are there 24/7 and it is the nurses providing the medical care so I don't think parents should get it as it is not them providing the specialist care that preemies need.
> 
> 
> Just my 2p worth :flower:

I was thinking more from the point of view of the parent rather than the child. Having a child in hospital is difficult, no matter what the age, but after a pregnancy, especially in the first few weeks, there are additional problems. As you said, not being able to drive can be a hindrance, leading to parents either having to take time off work, or spend prolonged time at the hospital. Mothers are often trying to establish breastfeeding or need to express regularly and this means being more hospital based than is necessary than with an older child in hospital. I would also suspect for the most part, babies tend to be in for a longer period of time when in NNICU than generally they are in children's wards (although I realise that isn't always the case) The other thing is, for some reason, children's wards seem more geared up for parents to spend long periods of time there. It is usually possible for a parent to "room in" with a sick child, but this isn't generally possible for so many parents to do in NNICU. We have been in children's ward in Stirling and noticed so much more accommodation for parents whereas in NNICU there was absolutely nothing - although this is better in the new unit at Larbert.

I realise it doesn't fit into the parameters of what DLA is for. Or that carers allowance isn't the best option either. I'm just thinking there is an added load in those first few weeks and trying to find a way to help parents within the existing benefits structure might be easier than creating a benefit that perfectly suits the situation.

One thing I would say is, we are currently trying to get a set of quality standards across Scotland for NNICU and have had various hospital big wigs saying they can't implement certain things for Neonatal because a similar option isn't available for parents of children in children's ward or even for parents of adult children in hospital. This did really annoy me because I'm not sure that's a good enough reason not to do something. Perhaps if they did decide to give additional financial help to parents of preemies, this would give more of an argument to parents of children in hospital long term to allow them to fight for the same thing. It shouldn't be an all or nothing situation.


----------



## xxClaire_24xx

we have been told that ellie is entitled to a disibility payment but tbh i wont claim as we dont see ellie as disabled even though she is classed as it cause she has cerebal palsy but there are people out there who we feel are entitled to it more, after peters dad being paralised from the waist down peter has seen first hand that there are people in more need of help xx


----------



## Foogirl

xxClaire_24xx said:


> we have been told that ellie is entitled to a disibility payment but tbh i wont claim as we dont see ellie as disabled even though she is classed as it cause she has cerebal palsy but there are people out there who we feel are entitled to it more, after peters dad being paralised from the waist down peter has seen first hand that there are people in more need of help xx

We took a different view. We also don't need it now as everything is provided for Abby and anything else we can afford to pay for. But the way I see it is, her care needs once she is older and perhaps at uni or even just getting her own flat, might be different and for certain she will need additional help, so the money goes into her bank account t and will be there when she gets to 18 and government help reduces quite a bit.


----------



## xxClaire_24xx

Foogirl said:


> xxClaire_24xx said:
> 
> 
> we have been told that ellie is entitled to a disibility payment but tbh i wont claim as we dont see ellie as disabled even though she is classed as it cause she has cerebal palsy but there are people out there who we feel are entitled to it more, after peters dad being paralised from the waist down peter has seen first hand that there are people in more need of help xx
> 
> We took a different view. We also don't need it now as everything is provided for Abby and anything else we can afford to pay for. But the way I see it is, her care needs once she is older and perhaps at uni or even just getting her own flat, might be different and for certain she will need additional help, so the money goes into her bank account t and will be there when she gets to 18 and government help reduces quite a bit.Click to expand...

yeah i think we all see it diff we already have accounts set up for the girls and they should have around 18k when they turn 18 we have their child benefit going in and then we pay a direct debit in monthly i think also im still struggling to deal with Ellies disability so actually receiving help would make it seem more real, does that make sense x


----------



## AP

I get you at that point Claire. We had a lady from a charity who applied for us, I just did the signing and all. I really didn't understand why she was applying and I thought we were just going to get lower rate if anything. When the award letter came I suddenly went into bigger denial and I didn't cope for a while, I even phoned and told them they must have made a mistake. Somehow I just didn't want to believe there was an issue. I have no idea what happened, except that it was the hospitals statement that done it

Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.


----------



## xxClaire_24xx

AtomicPink said:


> I get you at that point Claire. We had a lady from a charity who applied for us, I just did the signing and all. I really didn't understand why she was applying and I thought we were just going to get lower rate if anything. When the award letter came I suddenly went into bigger denial and I didn't cope for a while, I even phoned and told them they must have made a mistake. Somehow I just didn't want to believe there was an issue. I have no idea what happened, except that it was the hospitals statement that done it
> 
> Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.

yeah i think that further down the line when all her test are done and dusted al see where we stand as she still has further checks xx


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## Marleysgirl

I'm sorry, but choosing not to claim DLA doesn't mean that there is more 'in the pot' for those who you feel are more in need. That's not the way it works!

When I thought about the drug addicts & alcoholics who can claim DLA for what I personally consider to be self-inflicted 'disabilities', then I made darn sure that we claimed for Andrew. 



AtomicPink said:


> Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.

DLA, increased tax credits & carers allowance enables us to have one full-time stay-at-home parent for Andrew's early years. Given how many different people visit him to help with his various issues, having one of us home is the best way of helping him.

How nice it must be to 'not need' the money :blush: We're poor as church mice.


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## AP

I agree marleysgirl, I never thought of it like that. Having seen some IRL people I know claim for less reason I now think "do you know what? She (and us) are bloody well entitled."


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## xxClaire_24xx

Marleysgirl said:


> I'm sorry, but choosing not to claim DLA doesn't mean that there is more 'in the pot' for those who you feel are more in need. That's not the way it works!
> 
> When I thought about the drug addicts & alcoholics who can claim DLA for what I personally consider to be self-inflicted 'disabilities', then I made darn sure that we claimed for Andrew.
> 
> 
> 
> AtomicPink said:
> 
> 
> Then further down the line I understood better why we have it, it covers hospital trips, clothes and toys and aids for her development. I stash it away and it really helps when she needs it.
> 
> DLA, increased tax credits & carers allowance enables us to have one full-time stay-at-home parent for Andrew's early years. Given how many different people visit him to help with his various issues, having one of us home is the best way of helping him.
> 
> How nice it must be to 'not need' the money :blush: We're poor as church mice.Click to expand...

yeah i agree i def agree that you are entitled to and is ellie but its my own issues that im dealing with, ellie has loads of medical problems out with her disabilities thats hard enough for us to deal with and cerebal palsy is mild in her arms and we are still waiting to see how bad it is in her legs 

so yeah i think when we get to the point where i need to take more time off work then i will need that money xx


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## 25weeker

xxClaire_24xx said:


> yeah i agree i def agree that you are entitled to and is ellie but its my own issues that im dealing with, ellie has loads of medical problems out with her disabilities thats hard enough for us to deal with and cerebal palsy is mild in her arms and we are still waiting to see how bad it is in her legs
> 
> so yeah i think when we get to the point where i need to take more time off work then i will need that money xx

I understand not applying for it. We also could have applied for it due to Holly having a large bleed and all the doctor's seemed pretty certain she would have CP but like you I didn't want to accept that there could be a possibility she would have problems. I don't even think I could even write about it on here until she was about a year old because then you have to accept it. So far we have been lucky that she isn't showing any issues but I am fully aware they may not show until she starts school and needs to concentrate etc.


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## xxClaire_24xx

25weeker said:


> xxClaire_24xx said:
> 
> 
> yeah i agree i def agree that you are entitled to and is ellie but its my own issues that im dealing with, ellie has loads of medical problems out with her disabilities thats hard enough for us to deal with and cerebal palsy is mild in her arms and we are still waiting to see how bad it is in her legs
> 
> so yeah i think when we get to the point where i need to take more time off work then i will need that money xx
> 
> I understand not applying for it. We also could have applied for it due to Holly having a large bleed and all the doctor's seemed pretty certain she would have CP but like you I didn't want to accept that there could be a possibility she would have problems. I don't even think I could even write about it on here until she was about a year old because then you have to accept it. So far we have been lucky that she isn't showing any issues but I am fully aware they may not show until she starts school and needs to concentrate etc.Click to expand...

yeah we were the same things like ellie not being able to feed herself and get things to chew on like any other baby her age used to upset me alot and the fact she isnt taking weight on her legs very good yet i have it in my head she isnt going to walk but she will shes just had alot going on with having her cast on and stuff so yeah theres always the little niggle at the back of your head that there could still be more to come eh xx


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## Foogirl

Marleysgirl said:


> I'm sorry, but choosing not to claim DLA doesn't mean that there is more 'in the pot' for those who you feel are more in need. That's not the way it works!
> 
> When I thought about the drug addicts & alcoholics who can claim DLA for what I personally consider to be self-inflicted 'disabilities', then I made darn sure that we claimed for Andrew.

This was part of our decision too. We have both worked bloody hard to get to where we are and apart from CB are entitled to fekk all. Not taking the money benefits no-one, but does mean we get a little something back for once!


Marleysgirl said:


> How nice it must be to 'not need' the money :blush: We're poor as church mice.

Horses for courses. How nice it must be to be able to afford to drop a wage and actually get enough help so you can have one parent at home. I'm very envious. We'd never be able to do that - even if we were entitled to IS and Carer's allowance. I'd guess our mortgage alone is probably more than you spend in a month and with the market the way it is, downsizing wouldn't actually save us any money. Both of us have to work but we've each managed to negotiate terms with our employers for being able to have her at home a couple of days mid week so we work her appointments around that. I'd love to have the choice of not working but we'd be poorer than church mice - and probably living with them:haha: What's irritating is, when we moved house 6 years ago, I thought I had done the maths correctly so I would always have the choice. I never bargained on the economy crashing around our ears.



25weeker said:


> We also could have applied for it due to Holly having a large bleed and all the doctor's seemed pretty certain she would have CP but like you I didn't want to accept that there could be a possibility she would have problems. I don't even think I could even write about it on here until she was about a year old because then you have to accept it. So far we have been lucky that she isn't showing any issues but I am fully aware they may not show until she starts school and needs to concentrate etc.

For sure, filling in the form was very, very difficult. It was only at that point I realised just how different things are for Alan, Abby and me, and how much that impacts on our lives. And that was only the "care" part of DLA. I need now apply for the mobility component and I'm really not looking forward to it.


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## Lottie86

The mobility form isn't actually that bad Gayle compared to the care form, it's a really short form and you basically just need to write that Abby can only walk holding onto hands or with her frame and then measure how far she can walk and that's about it! I was expecting a long horrible form like the care form and was v pleasantly surprised.


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## angelstardust

Don't write that she can walk when holding hands, write that she is unable to walk unless fully supported by an adult or with the aid of a walking frame. 

Or you won't get mobility at all, it is very difficlut to get for children.


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## angelstardust

As for the original question, I don't think they should get any form of benefit as such just for having a premature baby but I am in favour for serveral things for prents of a child in hospital (regardless of age). 

Free parking at hospitals.
Travel pass (after all those attending a court hearing get them!).
Meal vouchers or a good discount on canteen meals.
If the hospital is not within travelling distance, accomidation should be free of charge. 

With regards to time off work I'd like to see some sort of 'dependants leave'. Different to sick leave since you are not sick but it should pause maternity and paternity leave. 

A premature baby in hospital is no different from an older child in hospital so I don't think there should be anything different, both are stressful and both are costly. 

DLA is different because it is for a disabled child and prematurity does not always equal disabled.


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## Lottie86

Ah I was just going on the fact that our physio told my friend to write that her son could only walk when holding hands or with his frame as full support implies the child need trunk support (ie someone holding them round their middle as well) 

It's prob another one of those 'depends who you speak to' things as whilst most of F's people are au fait with dla forms I've had several people tell me to fill in his forms based on a worst case day and was shocked when I said no I hadn't and wouldn't do that as you aren't supposed to :wacko: Apparently most people do still fill it in based on the worst case scenario which annoys me somewhat as it doesn't create a level playing field. 

I often think it would be far easier for parents for them to just scrap the dla forms and come and spend 24hrs with each child so they can get an actual idea of how much day and night care a child needs.


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## angelstardust

Depends on how often your worst day is. Ours seem to be getting more and more frequent. Wheelchair use has went from twice in a month to twice in a week (and only twice because we don't go out weekdays!).


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## mummy3

I'm very torn with this.

I have 4 preemies, all have needed NICU stays, although thankfully not as long as alot of women here:hugs: My youngest has had problem after problem related to her prematurity and a recently diagnosed skeletal displasia, we have a nurse visit to weigh her and she gets physiotherapy. We pay via health insurance as we're in the states now and our out of pocket for all the appointments etc was $12k, we had to pay that!!! On top of that, think childminders, taxis to hospital as hubby was working (he didnt get more than a couple days off and I have epilepsy so cant drive) and you're looking at easily 20K altogether. We're certainly not rolling in the money either. Now sure, would be brilliant to get help towards that, any help, but we planned our child knowing there was a fair chance of her being preemie so I feel its our responsibilty to pay for her:shrug: We save like mad, hubby works very very hard, with freelance on the side to make this work. 

Now I know others who are surprised to get a preemie or the pregnancy was unplanned so yeah can see where this would be helpful, I guess I dont see how it can be implimented? I'd say meals if you're bfing and free parking/help with gas would be fair? Also just having a preemie doesnt mean they're needing disability, I'd say wait and see with the option to apply if it materialises. 

Those that get these high rates but stash it away, surely that means you dont actually need it right now? How do you know what care will be needed in future? If you're able to save a fair fortune for the childs future, why should that be denied to another child that happens to not be preemie I guess? 

That said, NICU here provided dinner for me as I'm bfing and that was priceless (although we pay:haha:) and they were throwing formula at us from all angles when Eilidh needed fortified breastmilk!


----------



## xxClaire_24xx

angelstardust said:


> Depends on how often your worst day is. Ours seem to be getting more and more frequent. Wheelchair use has went from twice in a month to twice in a week (and only twice because we don't go out weekdays!).

hi see your from ayrshire where abouts xx


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## AP

Stash it away wasnt a good word from me tbh, sounds like a pot of cash which is so not the case here!

I feel very uncomfortable discussing DLA with anybody, and on here there's still that part of denial in me and I think we shouldn't have i because i would like to believe nothings 'wrong'. But in reality we would struggle often. 
We don't (and I doubt anyone else here) receive DLA because we have preemies. It's nothing directly in regards to that, but the issues they face daily. 

I wrote further on this but deleted because I don't want to explain our personal circumstances to a forum, it's raw

Now who flipping bumped this thread!!!!


----------



## mummy3

AtomicPink said:


> Stash it away wasnt a good word from me tbh, sounds like a pot of cash which is so not the case here!
> 
> I feel very uncomfortable discussing DLA with anybody, and on here there's still that part of denial in me and I think we shouldn't have i because i would like to believe nothings 'wrong'. But in reality we would struggle often.
> We don't (and I doubt anyone else here) receive DLA because we have preemies. It's nothing directly in regards to that, but the issues they face daily.
> 
> I wrote further on this but deleted because I don't want to explain our personal circumstances to a forum, it's raw
> 
> Now who flipping bumped this thread!!!!

I got wrong end of stick then, sorry:hugs:

I think its raw for every parent who has a child/children who have special needs and need extra help:hugs:

Also I'm not in Uk anymore so have absolutely no idea how it works anymore so really should keep my mouth shut:dohh:


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## angelstardust

You can't stash DLA, if its being saved long term (ie, not being saved for an expensive peice of equipment but saved for the furture) they can and will stop DLA and make you repay it. 

DLA is ALWAYS a touchy subject, even within specific support groups, there is always a 'what rate do you get? But I do more that you, they are worse than so and so who only gets'. But DLA discussions belong in the special needs board, not here. 

Course, my premmie is now 6 so I am far more used to the whole special needs child world.


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## Foogirl

angelstardust said:


> You can't stash DLA, if its being saved long term (ie, not being saved for an expensive peice of equipment but saved for the furture) they can and will stop DLA and make you repay it.

I'm not sure who told you this but it is absolutely incorrect. As a non-means tested benefit, it makes no difference how much money you have, whether or not you get it, the entitlement is for the condition. That I can pay for what Abby needs at the moment is irrelevant. That I choose to save the money for her at a later date is my business. The DWP cannot be so prescriptive with how people choose to use benefits, otherwise they could equally say someone getting DLA and using it to pay the gas bill or for food shopping and perhaps using charities or jumble sales to buy cheap equipment for their children should pay back their DLA benefit. The only time they can ask for it back is if it is claimed fraudulently. Taking it when you don't need it isn't fraudulent, taking it when there is no entitlement to it, is. Abby is entitled to it.



mummy3 said:


> Those that get these high rates but stash it away, surely that means you dont actually need it right now? How do you know what care will be needed in future? If you're able to save a fair fortune for the childs future, why should that be denied to another child that happens to not be preemie I guess?

Me claiming the benefit that Abby is entitled to, does not mean another child (preemie or not) cannot claim it. DLA is for any person (child or adult) who requires additional help with care or mobility. The reason it was suggested that DLA could be claimed when you have a preemie, perhaps in the first 6 months, was that it is an existing benefit and it might be easier to introduce help for preemie parents within the existing benefit structure than trying to create a new benefit.

I do "stash" the benefit. And I have no problem with that. I don't know the level of care Abby will need when she is older, but I know for sure she will need additional help. The reason I want to be able to put it away for her, is there comes a time, when a child turns 18 that much of the help and assistance they get which is government aided at the moment, disappears. She won't get the same regular physiotherapy, the orthopedic shoes and to some extent the walking aids she needs. If she continues on to further education, which I am certain she will, she won't get any additional support unless she chooses one of a very small number of universities / colleges and will have to pay for that herself. Even looking for flats to rent or buy when she wants to leave home will be difficult as her choice will be limited and that always comes at a cost. Whilst my husband and I work our arses off in relatively well paid jobs, pay thousands a year in taxes, we can afford to pay for any equipment or additional therapy she needs, but we also want to secure her future and the extra money we get in DLA benefit helps us do that. I suppose, if it makes people feel better, you could say we use her DLA for extras but are still able to save a couple of hundred pounds a month for her :shrug:

It is also worth noting that Abby will not ever be able to have medical or travel insurance - indeed she will likely not even be able to have life insurance. Being born prematurely, and having had abnormalities show on a scan when she was 2 weeks old means that everything is considered a "pre-existing condition" so no-one will want to provide cover. If there is anything I can do to help her with that, and that includes looking for any benefit / grant she is entitled to, I will. I will never apologise for taking benefits from the government when I've paid so much bloody tax over the years and will continue to do so.

Fair play to you for being able to budget and have insurance so you can afford to do all this. Being my first child, frankly I never thought "oh I had better save extra hard and budget just in case my child is born early and goes on to develop a neurological condition" I would suspect most preemie parents, are in the same situation.


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## angelstardust

Foogirl, it was someone at DWP that told me that. The benefit is called Disability LIVING Allowance, its there to cover the costs of living with a disability and I can assure you that people have been made to pay back DLA that has been paid into savings accounts on the basis of they were not using it to better the childs day to day living. The entitlement is actually based on how the condition affects the childs day to day living, not the condition itself. 

Also it is not your DLA, it is your childs DLA. Fair enough if you do make plenty and would be saving that money anyway, but if someone received DLA for a child, paid the money into a savings account and planned on giving the child a lump sum of cash, then they can seize it back.


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## Marleysgirl

angelstardust said:


> Foogirl, it was someone at DWP that told me that. The benefit is called Disability LIVING Allowance, its there to cover the costs of living with a disability and I can assure you that people have been made to pay back DLA that has been paid into savings accounts on the basis of they were not using it to better the childs day to day living. The entitlement is actually based on how the condition affects the childs day to day living, not the condition itself.

I think that it would be difficult to prove that the DLA wasn't needed for the child's care - more likely is that the DLA claim in those cases were proved to be fraudulent (exaggeration) and repayment was ordered on that basis.

In Foogirl's case, she is choosing to save a sum of money equivalent to the DLA. She is most likely spending the DLA on additional care needs for Abby; and saving from her own or her partner's income. It is just easier to describe as "saving the DLA" because that only takes three words and my description took nine words.


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## Foogirl

lol. yes Marley, if it suits people to think that's how we are doing it, then so be it!

But at any rate, there is nothing in the rules which either proscribes nor prescribes how any benefits are spent. Apart from being nigh on impossible to police, it amounts to an interference from the government which is a step too far. They cannot reclaim saved benefits, just like they couldn't take back child benefit from a mother who spends it on crack. They certainly couldn't take back the "health in pregnancy grant" if it were spent on sweeties!

The confusion may be that if you were to save one type of benefit whilst claiming other, means tested benefits, those savings would affect the amount claimed. And your overall benefit would reduce

I fully understand the benefit is Abby's, which is why it goes into her savings account and not mine. I see no problem with taking the benefit for her future use, to provide the things she will no doubt need when the government deems her no longer in need of the wraparound care she gets from the local council and NHS at the moment.

Frankly, if anyone has a problem with it, they are welcome to swap their lives without a disabled child and without DLA for mine. I'd love to be in a situation where she wasn't entitled to it.


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## Marleysgirl

Foogirl said:


> But at any rate, there is nothing in the rules which either proscribes nor prescribes how any benefits are spent. Apart from being nigh on impossible to police, it amounts to an interference from the government which is a step too far. They cannot reclaim saved benefits, just like they couldn't take back child benefit from a mother who spends it on crack. They certainly couldn't take back the "health in pregnancy grant" if it were spent on sweeties!
> 
> The confusion may be that if you were to save one type of benefit whilst claiming other, means tested benefits, those savings would affect the amount claimed. And your overall benefit would reduce

This is my understanding too, but I'm not an expert and could be wrong. I'm trying to remember if I've seen any mention of repayment of a child's DLA over on t'other forum.


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## angelstardust

Did I actually say anything about what Foogirl is doing? I simply stated that DLA is not intended to be saved for the future. 

I remembered why I stopped using this forum, if you're not in the clique you are not entitled to an opinion.


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## Foogirl

Yes you did say something about it, you said they could legally come to me and make me pay it back if I saved it.

Opinions are fine. Just as everyone is entitled to challenge them. Incorrect statements of fact do need to be corrected, which is all that has happened. And there is no "clique" this is not high school, just a bunch of mums, some of whom agree and some of whom don't. I think you'll find I've disagreed with Marley and Atomic plenty.


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## AP

I wouldn't ever say its a clique here :(

Any how- threads derailed. 

The thread was intended to ask regarding the hospital stay.

Since I wrote the thread (a few weeks after discharge) Family Fund gave us a nominal sum to cover petrol costs, travelling, etc. This had nothing to do with DLA as we had not claimed at that point, so they must have an exception and this probably is available for any long stay.

Foo you've disagreed with me but I respect we are very different people. 
Still love ya tho ;)


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## 25weeker

Since this thread has now covered various things now and we were talking bout savings for children. Can anyone recommend a good account that a child can't access until they are about 25? Holly has her trust fund she will get at 18 but I don't want to give her all the money then because I can just about remember back then and I probably would have spent it on clothes, shoes & handbags! I have been looking but can't see anything.

At the moment her money sits in our account but need to sort something soon!


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## toothfairyx

I'm not sure you could lock it away anywhere until 25 unless you had it written into trust, in which case you need to speak to a solicitor.

I'm the same with mine - not too keen for them to have all the cash at 18!


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## toothfairyx

Just also wanted to add I am reading this thinking how strong you all are to deal with the hands you have been dealt. I don't see how a benefit awarded to a child, and administered by a parent could be policed in such a way that it could be taken back if it wasn't spent on something for that child in a defined period of time. If it was means-tested then fine, but it's not. Surely all that is happening is some money being put aside for the future of the child as I'm sure would be done in the absence of the benefit if people could afford to?


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## Marleysgirl

I've always thought of the Preemie section of B&B as being one of the most non-cliquey places online. We seem happy to disagree with each other, but always with respect for each other's individual situations and the choices that we/they have made.


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## Foogirl

Marleysgirl said:


> I've always thought of the Preemie section of B&B as being one of the most non-cliquey places online. We seem happy to disagree with each other, but always with respect for each other's individual situations and the choices that we/they have made.

So very true. I love we can all be adults about it and laugh, cry, scream whenever we need to. I'd have gone crazy without this section and never once was made to feel like an interloper or an outsider, right from the very start. And the same is true of the ladies I have met IRL, from this section. The same is definitely not true of some of the ladies on other parts of this board.

Total respect you you Marley. Wanna be in my gang? We can plait each others' hair and swap clothes and shit.:happydance:



toothfairyx said:


> Just also wanted to add I am reading this thinking how strong you all are to deal with the hands you have been dealt. I don't see how a benefit awarded to a child, and administered by a parent could be policed in such a way that it could be taken back if it wasn't spent on something for that child in a defined period of time. If it was means-tested then fine, but it's not. Surely all that is happening is some money being put aside for the future of the child as I'm sure would be done in the absence of the benefit if people could afford to?

Thanks for the kind words. We do find strength in numbers in this little corner. And yes, that's exactly the point. If it weren't for the extra stuff we need to pay for, I'd be saving for Abby's future anyway. And for sure, there are some days / weeks / months we don't need to pay for extras. Maybe a better option would be for me to spend the money on sweeties in those months:thumbup:


----------



## Foogirl

25weeker said:


> Since this thread has now covered various things now and we were talking bout savings for children. Can anyone recommend a good account that a child can't access until they are about 25? Holly has her trust fund she will get at 18 but I don't want to give her all the money then because I can just about remember back then and I probably would have spent it on clothes, shoes & handbags! I have been looking but can't see anything.
> 
> At the moment her money sits in our account but need to sort something soon!

I think there are accounts you can lock up til they are 25, but they do tend to be trust / shares accounts rather than cash savings. Have a look on Moneysupermarket. I'll see what Which? recommends too.

The other option is to take out an endowment or life assurance type policy that matures when she is 25. This is what my mum and dad did for my siblings and I. Of course the FSA would insist I note that the value of investments can go up as well as down.......:winkwink:


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## AP

Not sweeties Foogirl...

Bangles 

:haha:


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## lozzy21

God yes I think they should get something. It cost us £70 when Niamh was in hospital with bronciolitis for taxi's and food for OH, would have been more but I got fed because I was BF.


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## vermeil

Marleysgirl said:


> I've always thought of the Preemie section of B&B as being one of the most non-cliquey places online. We seem happy to disagree with each other, but always with respect for each other's individual situations and the choices that we/they have made.

well said!

Christmas before last our son was diagnosed with CP. He was 7 months, 4 corrected and alredy showing signs of paralysis on his right side. We were told he might never walk. Fast forward a (stressful, scary) year and all such signs have disapeared. He *seems* like a normal, happy toddler.

But like you other wonderful ladies have said - you NEVER stop thinking about it. Will he have a learning disability, is he developmentally delayed, he knows 3 words, not 5 as he should at his age!! you always worry about well everything. I'm constantly (secretly) jealous of my friends with young children who worry about oh not eating vegetables or stained clohes. I guess that part of having a preemie just never goes away.


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## Foogirl

AtomicPink said:


> Not sweeties Foogirl...
> 
> Bangles
> 
> :haha:

:dohh: Of course!


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## Lottie86

I love the way we can all have different opinions but we never get into a slagging match or anything over it we just agree to disagree. You're a fab bunch :thumbup:


Foo: Findlay would suggest buying monkeys rather than bangles :haha:


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## xxClaire_24xx

i save what little i get of my working tax credits and spend it on a holiday every year but with our wages we are safe on what we spend it so dont need the tax credits but we are entitled to them iykwim

as for the premmie thread i love it here i have always had my opinion heard and always can say how i feel xx


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## mummy3

I haven't had internet because of moving. I feel pretty attacked tbh, I didn't mean to offend anyone and apologised:shrug: I have 2 special needs children, I do understand how financially hard it is! I also said it was different if its your first child and you had no real inclination you would have a preemie. I have 4 preemies so yeah odds were pretty against me so I feel my responsibilty as I planned more, like I say, torn.

I take back everything, I thought this was just a friendly debate, certainly nothing personal was meant:flower:


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## Foogirl

mummy3 said:


> I haven't had internet because of moving. I feel pretty attacked tbh, I didn't mean to offend anyone and apologised:shrug: I have 2 special needs children, I do understand how financially hard it is! I also said it was different if its your first child and you had no real inclination you would have a preemie. I have 4 preemies so yeah odds were pretty against me so I feel my responsibilty as I planned more, like I say, torn.
> 
> I take back everything, I thought this was just a friendly debate, certainly nothing personal was meant:flower:

I certainly wasn't attacking you, just explaining my situation, as you explained yours. I'm totally with you about taking personal responsibility and making your own plans for a difficult situation. But if there is a benefit available, I see nothing wrong with claiming it. After all, if there had been help available, would you have turned it down?


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## xxClaire_24xx

mummy3 said:


> I haven't had internet because of moving. I feel pretty attacked tbh, I didn't mean to offend anyone and apologised:shrug: I have 2 special needs children, I do understand how financially hard it is! I also said it was different if its your first child and you had no real inclination you would have a preemie. I have 4 preemies so yeah odds were pretty against me so I feel my responsibilty as I planned more, like I say, torn.
> 
> I take back everything, I thought this was just a friendly debate, certainly nothing personal was meant:flower:

i think that you brought up a good question for a thread for sure and have just said how i feel and its also good to see how other people feel x


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## mummy3

I dont know if I would take a benefit if it was availible, maybe? After #1 probably but at this stage, what with already having 4 preemies tbh I dont think so unless of course things were absolutely dire as you never know whats around the corner!

Perhaps I didn't explain well, I dont have any kinds of problems with benefits, they can be very useful. In fact my autistic son uses a state school district special ed preschool programme where he gets therapies he needs for free so you could say thats a similar thing, I was just questioning (absolutely not judging) the saving of the money if its not immediately needed. I didn't mean no parents should get it just thinking aloud whether it should be there as insurance for the future for some kids but not others iykwim. Obviously if kids need extra help they should receive it exactly when they need it!

I do really apologise if I upset anyone, its so hard to judge tone online:flower:


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## Foogirl

mummy3 said:


> I dont know if I would take a benefit if it was availible, maybe? After #1 probably but at this stage, what with already having 4 preemies tbh I dont think so unless of course things were absolutely dire as you never know whats around the corner!
> 
> Perhaps I didn't explain well, I dont have any kinds of problems with benefits, they can be very useful. In fact my autistic son uses a state school district special ed preschool programme where he gets therapies he needs for free so you could say thats a similar thing, I was just questioning (absolutely not judging) the saving of the money if its not immediately needed. I didn't mean no parents should get it just thinking aloud whether it should be there as insurance for the future for some kids but not others iykwim. Obviously if kids need extra help they should receive it exactly when they need it!
> 
> I do really apologise if I upset anyone, its so hard to judge tone online:flower:

Lol, well, how about if I am saving it in case I have another preemie in future and can't afford to shell out for Abby's stuff :thumbup: That's good right?

And don't worry about offending me, I'm thick skinned enough not to be offended by other people's views!


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## mummy3

^^ Haha yeah in that case I'd say very good planning and be very jealous I didn't think of that before I had four of them:dohh: :rofl:


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## Marleysgirl

Curious. It's six months until Andrew's third birthday (almost to the day) and yet the DWP have already sent me out the 3yrly review form to complete, so that we can get the mobility element (which we won't get so I won't try). Six months struck me as rather early - has anyone else received theirs so promptly?


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## AP

We just got ours, due to expire in June.


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## Foogirl

Marleysgirl said:


> Curious. It's six months until Andrew's third birthday (almost to the day) and yet the DWP have already sent me out the 3yrly review form to complete, so that we can get the mobility element (which we won't get so I won't try). Six months struck me as rather early - has anyone else received theirs so promptly?

We got ours before we were even sent the letter saying she was getting the initial award for care! I think it was in October and she is eligible for mobility at the end of April. I had to phone to query it because the care award came through incredibly quickly and we had no idea she'd been given it and I actually thought they were sending us the forms to fill in again. They guy said the reason they send it so early is because it can take 3 months for it to be assessed.


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## hawalkden

Definally. Isaac was born at 35 weeks and spent 19 days in NICU so OH spent all his paternity time off just back and forth to NICU and by the end it was stressful due to no change or saying he can come him. He was aloud home on the Friday night and OH was able to spend just the weekend with him before going back to work on the Monday so I feel he's missed out big time at the moments I spent and spend with Isaac now. 

So yes I think the Government should give NICU parents and parents who's older children are in hospital for a long amount of time a Grant or extended Paternity Pay or for older children Children's Sick Pay. 

Just so it covers bus fare or petrol money and money for the café etc. also that little bit of money could go on bills. It's bad enough being on Maternity Pay with just one income coming in let alone Maternity Pay then OH having to take unpaid leave or using their holidays. 

Great thread, a petition should be started and then given to the Government to changing money and payment issues when parents who are going through a tough time as it is don't have to worry about money and paying things whilst not at home. 

Like some of you ladies have said about Maternity should start when your LO's are at home not when you finish work etc.

money eh? The benefit System is totally mashed up and not fair. When people need the money for the right reason and not rewarding lazy people shows what our Government and Country has come to.

Hope all your Premmie Babies are doing all well ;)!


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