Do you think preemie families should be given financial help?

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

'MON THE PRIMARK, by the way!
:thumbup: Much cheapness for baby clothes and slouchy house attire!

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.

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)

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.


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.

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

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:
 
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
 
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...
 
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.
 
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
 
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.
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.
 
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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