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

[Edenviolet]

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

Dd1 has pots. I have pcos. I had no idea the were connections between these conditions.

DDs consultant is doing some research into what's going on at an endocrine level - they know there's a connection, but not what it is yet. We also have mixtures of PCOS and POTS and EDS/JHS - I'd love to know what's at the bottom of it all then I can blame my DM for her rotten genes

Haven't read the full thread because I got bored of the bits where people started arguing about DLA.

But as an idea - could you put a card up in a window and see if anyone local is prepared to take you? You might find the odd retired/SAHM/out of work/any other reason someone might be home during the day person who would quite happily take you back and forth for the cost of petrol plus a bit extra if you could afford it so cheaper than a taxi.

There might be some nice people out there, and if you don't ask...

Apologies if someone else suggested it and I've nicked your idea

OP, I have nothing very useful to contribute, but I wanted to let you know that I sympathise wholeheartedly with you.

I have a significant disability. 2 of my 3 children also have a (completely different and unexpected) medical condition - not diagnosed until after the third was born. Fortunately their condition is one that can be completely managed, so our situation is not anywhere near as difficult as yours. But we also have a lot of medical appointments and I cannot drive (for disability reasons). I understand the huge difficulty you face in that aspect.

Do you have any religious belief? Even if you do not, do you have a 'cultural' religion (i.e. your parents' or grandparents' religion?) If so, could you make contact with your local church/place of worship? I feel that a good minister would do something to help - for example, getting local retired parishioners to offer help with driving you to appointments. If you got to know someone very well, and trusted them, then there might also be the option in the future of leaving three DC behind with them to babysit and taking one DC on the bus to an appointment - I appreciate that might not be possible, depending on the care the other DC might need at home.

I feel you really need some practical support - someone who can step in and help take you to places.

Also - wondering if there are any local volunteer organisations you could contact - not to be a volunteer obviously, but to receive help from volunteers?

Diabetes isn't the only thing that can cause ketosis, but there IS a chance that DS2 could have diabetes - we will find out more after seeing the Rheumy on the 21st. He's always gone into ketosis if he's exercised more than usual, I just didn't realise when he was tiny that it was ketosis. It's the ketosis and pear drop smell that finally got the Chief Physio to refer him TO Rheumy.

He goes into ketosis whenever he's ill, too...

Do you have a sure start centre near by OP? Ours offer something called home start, Where they have vollunteers who will come round and help you, help you get out if you have things to do with the DCs etc.

I don't know if it would be any use to you or if it would help but i thought i'd throw it out there. Your situation sounds incredibly stressful so maybe even them helping at home might take the pressure off a few hours a week.

Home start round here closed last year.

The children's centre do baby and toddler classes and I have my counselling there as ds can play in the same room which is handy.