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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

OP posts:
ilovemountains · 10/01/2014 23:05

You may want to spend more time with her before school, however quite frankly it is a luxury you just don't have. Put her in full time, your mental health may improve and then you will enjoy the time you do have with her more.

lougle · 10/01/2014 23:07

Does your area have the 2 year old funding for preschools, Hedgehog?

Original poster
Edenviolet · 10/01/2014 23:11

Yes but we are not eligible as not on is or ctc and earning under certain amount.

I thought maybe as ds2 gets dla but they said that isn't a criteria till September and ds is 2 in April.

OP posts:
Original poster
Edenviolet · 10/01/2014 23:12

My mental health would be worse, I'd worry about her. I've only just started to feel that she's safe at her current pre school now that they've done training and she's settled.

OP posts:
BobPatSamandIgglePiggle · 10/01/2014 23:23

This is getting a bit painful now. You might need a big car but you don't need a flash one. I don't particularly want to put DS in nursery either but i do. People have offered advice but the is no miracle answer. If there is no funding for taxis etc then you need to make some of the changes suggested.

Original poster
Edenviolet · 10/01/2014 23:27

It isn't particularly flash, it just had enough room for everything and dcs could get in and out quite easily.
I wasn't being difficult about the nursery issue, I just couldn't put dd in full time with her health how it is at present.

OP posts:
ouryve · 10/01/2014 23:28

Hedgehog - re tax credits - DH has a good job. A Professional but not higher rate tax paying job. Both boys have ASD and we get middle rate care and lower rate mobility for each of them. This qualifies them both for the disability component of tax credits, which means that we still get a significant tax credits award, each month, even with my carer's allowance, at a level that makes a huge difference. Have you declared your children's middle rate or higher rate DLA to HMRC, when claiming tax credits? The top up is even bigger for higher rate. In your situation, you should probably be getting well over £100 a week in tax credits.

ilovemountains · 10/01/2014 23:31

The car may.not be flash but you cannot afford it. Sell it. Buy a cheap run around for your dh's commute. Use taxis. That is your only option for getting to medical appointments and is in the best interests of your children.

Original poster
Edenviolet · 10/01/2014 23:32

Yes we get tax credits, I need to check our award though and that of hb as I think it may be wrong. Will be phoning both on Monday.

OP posts:
lougle · 10/01/2014 23:33

Hedgehog80, start from the beginning and work your way through.

  1. Check that you are getting all that you are entitled to.
  2. Check what the difference would be between that and if your DH either went part-time or gave up work.
  3. Look into whether you could claim nursery costs through tax credits. As your DH works over 16 hours per week and you get carer's allowance, you are entitled to claim up to 70% of your child care costs, up to a maximum cost of £300 per week.

Once you've done that, you'll be able to see if there are any options for making things better.

Can your DH get a job closer to home? 1 hour's commute is a lot of petrol.

Original poster
Edenviolet · 10/01/2014 23:42

Its the closest I think (and he works for his db who doesnt moan too much about reduced hrs, time off occasionally etc)

Wouldn't send dd2 full time but could look into it for ds2

OP posts:
livelablove · 10/01/2014 23:45

hedgehog I am concerned that the tone of this thread is not suitable for supporting you with your mental health problems, even though the posters are being helpful andgiving you good advice. Maybe you should stop this thread and start a new one in a more suitable topic.

Original poster
Edenviolet · 10/01/2014 23:50

It has gone off the original subject a bit hasn't it.

I'm ok, taken on board the good advice given by some. Probably not much more to add anyway or it'll just be going round in circles.

OP posts:
CouthyMow · 11/01/2014 00:12

24 trips a year is better than the 12 taxi tokens a year in my area that equates to just 6 return journeys by taxi per year. Still utterly shite though.

fidgetsnowfly · 11/01/2014 00:12

Hedgehog, you've had such a hard time on this thread. People find it hard to accept that some people don't drive - the cost of it is prohibitively expensive for me, I know.

You are entitled to this service. I used hospital transport when I was in my 20's and attended a hospital 150 miles away 3 days per week. they did take my dc's in the car with me - what else was I supposed to do with them? I eventually got a grant to help with a nursery place on the days I went to hospital, once I'd stopped breastfeeding and was happy to leave them. Do you have a social worker? Can you ask them to help you address the transport issue? It is not just for old people, although it is often older people who need it. It is meant for people like yourself in dire need. perhaps a social worker having a word with the transport provider would help?

The receptionist knows nothing about your circumstances, and it is not her job to act as a gatekeeper for the transport service, so don't be put off by her.

I think by posting in AIBU you've attracted a lot of people who are spoiling for a fight and don't understand. Try posting in special needs instead - or in forums that support people with the particular disabilities that affect your family? heartline is one.

SoonToBeSix · 11/01/2014 01:10

Op don't move your dd's school I can't believe people are telling you too. Tbh they make me really angry, obviously they don't have a child with a disability. Finding the right special
School for your child is very hard to move her would be awful.
Whereabouts in the Uk are you if you don't mind me asking?

lougle · 11/01/2014 08:21

hedgehog80, I'm trying to think of ways to make your income go further. You say you spend a lot on food - is that because of medical conditions or is it just general living costs?

DH and I had fallen into the trap of being tired, so not planning meals, then going to the local shops for food, etc., which pushes the cost up hugely. Now we menu plan and have a weekly shop delivered and it has totally slashed the cost of food for our family of five.

We also started using YNAB,a budgeting system, in September. It has revolutionised our budget and we are so much more mindful of our spending. It really does make your money go further and almost without fail, people report that they feel 'richer'once they are using it.

I know you didn't ask for budgeting advice, but as someone upthread implied, your situation will only improve if you get more money in (unlikely if your DH is in the highest paying job he can get and you can't work) or have less money going out.

halfwildlingwoman · 11/01/2014 08:37

Oh My God! I haven't read the whole thread, but got to page three and read that you have to use DLA to pay for glucose monitoring and was so horrified that I had to jump to here to comment. That is fucking outrageous! I honestly don't know why we aren't rioting on the streets.
Sorry, that doesn't add anything helpful, but I wanted to comment.

lougle · 11/01/2014 09:03

halfwildingwoman it's not outrageous to have to pay for a monitoring system that isn't essential. continuous monitoring of blood glucose levels is a choice. The standard monitoring would be done by finger prick testing throughout the day. The NHS can't provide 'gold service', just as many optimal treatments are unavailable on the NHS but may be bought/commissioned privately.

Custardo · 11/01/2014 09:11

Hedgehog

Are you in touch with the various charities that support your childrens conditions?

they may be able to help

volunteer drivers, or ideas where there are pots of money you dont know about

or indeed their own funds - they maybe willing to pay for some taxis

its worth telephoning them

LadyBeagleEyes · 11/01/2014 09:30

You come here again and again Op with the same problems and any advice you get is dismissed.
There's a lot of good advice on here but you're just not listening.

JugglingBackwardsAndForwards · 11/01/2014 09:40

Just a general response to that post LadyBeagle ....

People are quite entitled to come here (MN) again and again with the same problems.
It's also up to them how much they listen to any advice offered and how much they (are able to) put it into practice.
Change is never easy for anyone, especially where there are multiple issues and health concerns involved.

Perhaps through posting one or two ideas offered may provide the next steps forward for someone ?

candycoatedwaterdrops · 11/01/2014 09:42

It's not that the OP is dismissing the suggestions, it's that it's not always bloody possible! Give her a break; she has 4 disabled children, MH problems and a husband who is not always very supportive.

YouLoveItDoreen · 11/01/2014 09:43

Sorry OP, I hadn't understood what FF meant in terms of you learning to drive again, I am disabled and am friends with a few sufferers of the same condition as me, they hire transport from companies like dial a ride for transport, but I understand that it would be an additional cost,to your already tight budget. As I mentioned previously, you can access a grant through Motability which would pay for you to learn with BSM, if you did want to learn to drive at some point, my driving instructor was really great, I was nervous because my joints are unreliable.

I don't think you should have to change your DD's school, it really is the best place for her, and you say it is the smallest bill you have outgoing.

I agree that DH stopping work may be beneficial, would he be interested in a OU course, maybe that could be the time to himself that he needs, but it would also be useful for when he is able to return to work, I'm sure that he would be able to do this for a reduced fee if he was a carer. It's something for you both to consider.

You have so much on your plate, I wish I was local as I'd happily help you out with transport.

Original poster
Edenviolet · 11/01/2014 10:02

Continuous glucose monitoring is essential for dd as she has no hypo awareness. We we having to do 20plus finger pricks a day and due to other conditions her skin was damaged and they were bruised and wouldn't stop bleeding. It still didn't catch all the hypo either and she has been hospitalised due to severe ones.

The monitor alarms is she starts dropping or is too low, without it we wouldn't manage.

Our food bill is a lot, some of ds foods are a bit more expensive due to having allergies but not greatly. We spend a lot on nappies wipes etc but have cut back recently to get more value brands as need to save somewhere.

OP posts: