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[ExistingonCoffee]

A thread for all who have DC with SN. The thread is deleted and 90 days and doesn’t show in active. The fire is on and the bar is well stocked.

Just had a school ring to say they want to look at DS at school "we are a very different setting to an SEMH school" she says - yep, we know, that's why we are looking for a school move. Explained about his language comprehension difficulties, that the updated EHCP is still inaccurate, and that he's working up to GSCE Maths with his tutor. Sounded positive but his school Easter holiday is late so it won't be till after the 22nd.

Could she not use a library or community centre or are rooms too expensive

She is using the library but the student still feels uncomfortable (can't go into details for confidentiality reasons).

Prescriptions, meds and Depo Provera injections are a big reason why DD1 is in a specialist centre with its own onsite team of nurses and doctor 24/7, pharmacy, GP practice, visiting consultant neurologist and psychiatrist!

The only part of the NHS, which worked well here was the local pharmacist!

Just the argument with the GPs about the midazolam formulation took months of me running between the pharmacy, GPs, epilepsy nurse, consultant neurologist and finally the LA epilepsy nurse; while the GPs told me the formulation DD1 was no longer manufactured; but the LA and CCG had in their official policies, it was the only one to be used as all care workers were trained in its use! It took the LA epilepsy nurse writing two letters to the GPs, pointing this out, before they would prescribe me it!

The consultant neurologist can make a drug change the same day; and it’s implemented immediately.

@NoHaudinMaWheest figuring out things is a huge shift towards maturity you must be so proud. Good luck to your DS.

@NoHaudinMaWheest good luck to DS. I hope DD can navigate the situation. What do you think about the Scottish carer additional person payment? On one hand, at least it is recognition some carers care for more than one person. On the other hand, the paltry amount is offensive.

This afternoon I was reminded of the need for precise language. I took DS3 to a hospital appointment. After the appointment I dropped a bag off to a neighbour whose stay in hospital after an operation has been extended. While I went onto the ward, I left DS3 sitting on some seats close to the ward. I told him not to move. I was only gone a couple of minutes but returned to an anxious DS3 because someone had sat in the seat next to him and DS wanted to move to one of the other seats but couldn't because I told him not to move.

I hadn't actually noticed the additional person payment because now that I am state pension age I only have underlying entitlement and don't get any actual money. I suppose it is the beginning of recognition for those with more than one person to care for but as you say only a token.
When people talk about disability benefits being too high I always think that actually the overhaul needs to be in the other direction. It is ridiculous that my Dd gets the same rates as your DS1. Not because she is getting too much but because Ds1 needs, and should be getting, much more. There needs to be at least two higher levels above the current higher care rate.

They're probably taking it out of the reduced amount of claimants who qualify @ExistingonCoffee . There was a news article a couple of days ago that said that since the new benefit was brought in, less people year on year are qualifying.

@Lougle I haven’t seen the news about fewer people eligible for the carer support payment, but that will explain it.

@NoHaudinMaWheest that is another one of my grievances. I understand the rationale behind overlapping benefits and the problem isn’t unique to the state pension and CA/CSP, but caring and the expense of that doesn’t stop just because someone becomes SPA. Pension Credit has a carer addition. Perhaps the state pension should too.

It makes me chuckle when people suggest disability benefits are assessed based on the person’s actual costs when they don’t realise this will mean a higher benefits bill. Not to mention the cost of administering such a system.

ExistingonCoffee yes I am not doing any less than I did a year ago. Obviously SP is a lot more than Carer's so I do feel better off but the lack of recognition is galling.

Did you know that carers in New York can be paid up to $37,468 per year as a payment to care for their disabled loved ones? It puts our £4700 into perspective a bit!

lougle that would blow the minds of some AIBU posters.
Another thing about the additional person payment is that it is a flat rate so no consideration for those of you caring for more than 2 people.

@NoHaudinMaWheest people can get the additional person payment for each extra individual they care for. Assuming they meet the criteria, you provide at least 20 hours of care and someone else isn’t already receiving the carer additional person payment for them.

@Lougle that figure would be amazing. I knew there was the potential for a lot more, but I didn’t know the exact amount. Although I know many don’t receive anywhere near as much as the maximum because there are more eligibility rules than carer’s allowance. I believe there is a lot more paperwork involved in the disability system in the US too.

ExistingonCoffee interesting the paperwork I was sent really didn't make that clear. It is clear on the website but surely such basic information should be on the letter otherwise what is the point of sending it out.

NHMW one may think the obfuscation was intentional. Lip service in order to be able to say ‘well we told you.’

I’m not sure how anyone would begin to assess how much it would actually cost to keep ds. We’ve sculpted our life around him. His benefits are enough, but that’s because of our set up here. When dh has to work away during the week or once we retire, it’s going to be more difficult

DDIL made a familiar complaint yesterday. The school has done nothing to teach DGD all year, yet DS and DDIL can’t take her out of school for two weeks, to visit her family on cheaper flights to her home country! Prices of flights are sky high at school holiday times, like Christmas, Easter, etc, when all her countrymen want to go home for the religious festivals.

We got the "options" form home for DS today. We can't work out whether they've never told us before this moment that there were actual options available because they didn't want us to ask about them or because they didn't think any of the parents would be interested.
The form is such a complete mess I've had to email back with 10 separate questions including "what is subject A because you don't mention it in the subject descriptions though it's in the options" and "why does one list mention B and C when the other list doesn't" and finally "why are you giving case studies of pupils choosing subjects you don't offer, and going to university to study subjects you apparently only offer at Entry Level". I mean not that they offer any combinations that could lead to A levels either. And yes I know you can go to university without A levels but if they are not even offering 5 subjects to GCSE 4 and above it's not likely is it?
They have to choose 9 subjects and get allocated 7 but all of them are only offered at max Foundation level or Entry level except English language, maths and science (which is called "science" in one place and "biology" in another.

DD1 was on top form today. We got a last minute cancellation appointment for pain clinic, and the Consultant happened to be someone I worked with in theatres for a while, and who had treated my migraines with Botox injections.

He made a fuss of DD1's name, bigged her up. He then told her that doctors are rubbish because they are looking for really nasty things and once they can't find them they send you home. He then asked what she wanted him to do for her, and DD1 said 'Your job'.

He decided that medication isn't going to help but a local anaesthetic and steroids injection might. DD1 said she didn't want needles. So long story short, he said he wouldn't do it today because she isn't keen, but she can let him know if she wants it a bit later.

I then casually mentioned that if she did have the injection in the future, we'd definitely need to get a Costa drink afterwards. She looked up, then said 'Can you do it today?' 🤣 I made a fuss of the fact that the lovely doctor probably didn't have time today. He said 'Well, I don't have time today, but, DD1, I will make time for you!'

So she hopped up on the couch, he injected her, then she exclaimed that it hardly hurt at all, and thank you so much for giving her an injection, and that she was going to get her Costa drink now!

@Lougle brilliant. Well done DD1. That Costa was well deserved. I hope the injection (and drink) helps. Having a doctor who ‘gets it’ makes a world of difference.

@drspouse the science/biology discrepancy might be because they offer GCSE biology and entry level functional skill science. The reply to the case studies question may be that their offer varies year to year depending on that year’s cohort.

@ExistingonCoffee there are no years in their results with any GCSEs beyond single combined. They just can't proof read.

There hasn’t been a single award combined science GCSE in England since 2017. Although there is at IGCSE still.

lougle great work from you and the doctor. I hope it helps DD1.

It's billed as biology, chemistry, physics, one GCSE. With chemistry and physics spelled out and described.
Like I say, they are just useless at proof reading.

@Lougle i love it when professionals know their audience and that mum is in on it. Makes for excellent team support work.