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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think we are just as entitled to this help as 'older' people?

358 replies

Edenviolet · 10/01/2014 11:05

We have four dcs all with significant health issues. I do not drive and we struggle to get them to the numerous and frequent hospital appts and they also have a lot of illnesses so need to see the gp a lot.

This has meant dh taking far too much time off and when he can't it costs a fortune in taxi fares.

Our gp surgery runs a transport scheme for gp and hosp appts. I phoned today as we really need the help. The woman I spoke to was decidedly off and said the service is really meant for older people, and how had I been getting to appts till now why couldn't I do that. She was very sharp in her manner and quite dismissive. Then she said I had to see the dr to get approved and that they might not and if they do there was no guarantee she would be able to find a driver when I needed one.

I phoned back to make the gp appt and suddenly heard my name in the background- the woman I'd just spoken to was talking about me and dcs to another person and it didn't sound complimentary! The receptionist I was speaking to suddenly realised, put the call on hold then came back on and said , oh I'm really sorry about that.

It has made me feel like rubbish Sad

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whois · 10/01/2014 21:06

While writing that I see you posted that you have a council house an no one wants to swap.

Really, the only solution I can see is SH stops work. This would take a huge strain off you and the family!

You say all you need is help to get to appointments? How is that realistically going to happen? You can't drive. You can't learn. You can't move. You find it hard to get a taxi. You can't afford taxi's anyway. You can't get a bus. Voulenteer services can't or wont take you and all DCs anyway even if they were available.

DH has a car and can drive but won't take the DCs cos he wants to work. Which on the face of it sounds like a good thing, but I feel its actually very selfish as working is easier than staying home and dealing with your nightmare day to day situation.

Original poster
Edenviolet · 10/01/2014 21:07

Dd1 has a very large bursary which we just top up, she really needs to stay at the school for many reasons, its very small, all on one level, has a nurse there every day and a room fr her to rest/sleep in when ill. Its perfect for her.

Iam on anti d and having counselling weekly. Driving didn't work as I was really rubbish at it and very nervous, I pet getting migraines during lessons and couldn't see, it was a disaster.

We can only move to where we could swap for another council house so are limited. My dad is really far away and unwell so wouldn't be able o help us if we lived there.

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Original poster
Edenviolet · 10/01/2014 21:09

Dh has reduced his hours to help each morning and does book time off for some appts he just can't do all of them.

Some weeks if dcs catch something we end up at the GPS numerous times on top of everything else and e just can't be off work that much.

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Original poster
Edenviolet · 10/01/2014 21:10

Kept not pet

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Original poster
Edenviolet · 10/01/2014 21:12

We didn't know at first they would all be ill.

Some of their illnesses like severe allergies, type 1 diabetes and scoliosis are recent developments that could never have been predicted. We did not know they would all be so ill.

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Original poster
Edenviolet · 10/01/2014 21:14

Oh and my mental health was fine initially, its since dd got diabetes I've really struggled.
When I ad my first I had no idea what lay ahead

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Original poster
Edenviolet · 10/01/2014 21:14

Had not ad

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livelablove · 10/01/2014 21:22

I do think your dh should seriously consider dropping work and taking over as main carer. This would enable you to claim housing benefit if you do decide to move, although you may be better off staying in the council house. He could retrain while he is not working and when your dc are older and all at school he may be able to go back to work, but in a better situation. If he is not academic he might train in a skilled trade, like plumber or electrician. It is actually hard to retrain while working, so this would be a chance for him to do that.

JugglingBackwardsAndForwards · 10/01/2014 21:22

Am thinking maybe you do need to look at whether you can afford for dd1 to stay at private school, even with a bursary. Changing to another school (which could hopefully meet her needs equally well?) might free up a substantial amount of money. Enough for driving lessons for you as a priority?

whois · 10/01/2014 21:23

Thats good to hear your mental health used to be fine - lots of hope that you can work through this and things will improve! I really think some time away from the home situation would do you wonders. I don't think many people would be able to cope with everything that you are coping with.

I hope things improve for you, I really do.

lougle · 10/01/2014 21:25

Hedgehog, I got very ill, very quickly 3 years ago. I was collapsing on a regular basis and had to surrender my driving licence. I had 3 children 5 and under, one of whom went to special school.

When Social Services came to assess for support (before DD1 got a SW in her own right), because I couldn't care for the children safely, as I didn't know when I might collapse, their solution for our difficulties was for DH to give up work.

Luckily, we didn't do that, because it turned out that rather than having a serious condition such as epilepsy, the drugs I was prescribed to reduce and prevent my migraines were interacting and causing me to collapse.

However, in your situation, these illnesses are not going to go away.

You say that you want your children to see your DH going to work as a good role model. I have to say that what I think they'll see is that 'mother must cope' no matter how hard it is. That's not a good role model for your children.

Something needs to give. You can justify every cost individually, but at some point you have to acknowledge that something isn't working.

You are getting a lot of money in, if you're claiming everything you're entitled to. Yet you have no money left for essential trips to the hospital.

Do you get the Tax Credits Exemption Card? If you do, you're entitled to some money for travel costs. It wouldn't cover a taxi, but it gives something. Do you claim the travel costs back each time?

whois · 10/01/2014 21:26

JugglingBackwardsAndForwards I keep thinking that - but if the DC is getting really well looked after with a nurse and a room to rest in, then it would be heart renching for OP to move her. Especially if the DC had had a bad time of it in schopol before moving there. I can't think many state schools would let a child have a rest, they would be more likley to call Hedgehog80 to come pick her DC up which woudln't work.

Original poster
Edenviolet · 10/01/2014 21:28

The other schools we looked at could not meet dds needs in the way her current one can, the bursary is nearly full fees so the top up amount is not expensive, it is in fact one of our lowest bills. Dd did soincredibly well to pass all the exams and her attendance is 92% as they allow her to rest when there and help her so much. At her previous school the year before her attendance was 72%.

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JugglingBackwardsAndForwards · 10/01/2014 21:28

Any (good) school should be able to meet the needs of all the children, including special needs such as a place to rest when needed ?

whois · 10/01/2014 21:29

Hedgehog80 I think you should show DH this thread... he would be doing the right thing for his family to stop work. You would have more money, more support and access to transport. Think how much easier your life would be.

Being a martyr isn't a good role model, nor is being too proud to consider giving up work when it is currently so detrimental to the family.

JugglingBackwardsAndForwards · 10/01/2014 21:30

X post there Hedgehog - obviously it's your call about dd1's schooling.
Just from what I know private schools are usually very expensive.

IAmNotAPrincessIAmAKaleesi · 10/01/2014 21:31

My DH had to give up work when I became severely disabled. It's no ones idea of an ideal situation but we manage ok. It was really the only way for us and it was gutwrenching to go from both of us working full time to neither of us but it was the only way to keep me and the children safe and that has to be the most important thing

NiceTabard · 10/01/2014 21:33

Kind of skimmed and skipped but here is my thought.

£280 a month on car ins is massive.
Because he hasn't been driving long etc.
Car is BIG used for weekends and evenings with kids and DH commute.
Clearly DH being in work is positive for family long term future etc.

So.

He could maybe research what the insurance would be on a much smaller, cheaper, low powered runaround. If it is significantly cheaper, the difference could/might pay for taxi costs.

Average ins costs are prob £30 a month, at a guess, that leaves you £250 to play with. Lots. He keeps on at work with a view to building years no claims / getting on with employment prospects and in a few years you are able to buy the big car for all the family and it's not through the nose.

Just a thought Smile it would be worth getting him to look into it. Insurance classes and stuff are on the net, his current insurer might have a steer.

£280 a month on car insurance seems obscene and cutting that back to the bone would free up a lot of money to give you and the kids more ability to get around Smile

longjane · 10/01/2014 21:33

You do that the council will pay and take your kids to school?

Original poster
Edenviolet · 10/01/2014 21:34

I have never even heard of the tax credit exemption card but maybe that is because dh gets slightly over the threshold for things like getting tax credits and free prescriptions, we have to pay for them for dh and I so I assume it is the same criteria?

The only thing we knew ( after having first two dcs) was that all our dcs would have eds. the other conditions (pectus excavatum, pots, migraines, allergies, scoliosis, bowel problems and diabetes) we had no idea about. Never in a million years would I have expected to be this unlucky.

I just thought that the patient transport scheme might help us. Maybe dh does need to give up work, when dd was first diagnosed I asked him to, I even posted he under a diff name but 99% of replies said I was u to get him to give up a job in the current climate and to seek alternative support.

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Thetallesttower · 10/01/2014 21:37

Your DH would hardly be giving up work, he'd just be working at home as a carer. I agree that this situation is unsustainable, I've also read your posts over the past year or two and wonder how you cope, both with your own problems and then juggling the endless needs of your other four. You sound a lovely family and like you want to do the best you can but I agree something has to give and in this situation, I think your husband becoming a carer could work for a few years- til the children are a bit older. You cannot continue living like this.

Original poster
Edenviolet · 10/01/2014 21:38

At dds current school with it being so tiny she does not feel too different, when she's feeling not too bad she can get from classroom to classroom and is the 'same' as her friends.

The other schools we looked at were huge, they would not re timetable to keep all lessons in same area instead wanted dd to sit in the sn room on her own if she wasn't well and said if she was ill enough to have to sleepor if she collapsed she would need to go home. Her school let her sleep or recover after a collapse then go back to lessons so she has much better attendance.

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livelablove · 10/01/2014 21:39

He might have to start retraining slowly at first maybe taking a few evening classes or doing home study in the basics of what he is interested in, then as dc are at school more he could do a full time course and get fully qualified. Maybe look at starting his own business where he could still be flexible with hours, even when dc are older?

Thetallesttower · 10/01/2014 21:40

Hedgehog I think people usually think dropping out of work is a bad idea, but the thing is you've tried to make it work and you can't. All of the pressure is on you to go to the appointments, you are on AD's and your own medication, it's just too much and looking after the others as well. If he was at home, you or him could take one child to an appointment without the others and use the car for this purpose. I am very much pro-working if feasible, but to my mind, being a carer IS work, and in your case, given you are ill as well, one carer is not enough, you need a carer to care for you and some of the children at any given moment.

I would talk again with your DH about giving up work if it will make your richer and give you more hands on help.

Original poster
Edenviolet · 10/01/2014 21:41

I wonder, if given the circumstances the ff would award another grant for lessons, I know you can apply once a year so would it be worth a try?

I've had lessons already in 2011 but not claimed from them since as have not needed anything, if I explained the situation perhaps they would pay for an intensive course? I don't know if I'd pass but I could try.

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