The Goose and Carrot Pub Thread

[roaringdragon]

Everyone is welcome, and the thread disappears after 90 days.

Thank you for the last thread @lougle. I hope the doctor was helpful and DD2 isn’t feeling too rubbish this morning.

DS1 has used the last of his EOTAS hours today. There will be at least a few weeks before the EHCP is finalised and funding restarts. He will hopefully have his operation during that time, but it is still going to feel like a long time without that provision.

@NoHaudinMaWheest hooray for small but vital parts. It's so nice to hear.

@roaringdragon coffee and cake can make all the difference, can't it?

It is nice to see the glimmers of social motivation in DD2. It feels like the scene from Castaway, when Chuck Noland is learning to start a fire by rubbing the two pieces of wood together. So many false starts, hands stabbed on broken wood, etc. I keep reminding myself that tolerating someone sitting beside her, and knowing her name, is a tiny but important step. She also told me, with some empathy, that she thought the girl was struggling a bit.

@Lougle that is big for DD2 and her empathy is beautiful. Have you watched The Pitt? As a GA fan I think it might be worth a watch.

@NoHaudinMaWheest inclusivity at its best for DS. A theatrical bravo!

Traction on study for DD the laptop was opened, that is the biggest hurdle, work will follow or not. Late night and travelling for work v v early for me.

@roaringdragon i was saying to DM today how wonderfully accessible things are as we took in her food shop and 2 packages. Cake through a car window is up there.

@roaringdragon DD2 has just had an update on her Universal Credit account to reflect the LCWRA award that has transferred from ESA credits only. She's been awarded the higher rate of LCWRA. Do you think this is a mistake? When we talked before, you said that even though her disability was declared before the change, the fact that her assessment was after the change meant she'd get the lower amount. If it's a mistake, I'll contact them, but I wondered if there has been an update or clarification of the rules that I've missed.

Really really difficult evening with both DCs yesterday. DD very reactive and hurt by DS because he got very excited by her screaming and then by me as I told her to come upstairs with me, she wouldn't listen so I had to physically remove her.
She was then hurting me as I wouldn't leave her to go to bed in a bed full of chocolate she'd taken from DH T1 diabetes stash and in her school clothes.
I am exhausted this morning though WFH and have only short urgent tasks plus a couple of tasks with a long deadline that I can plough through.

@drspouse that sounds really hard. No wonder you're exhausted. Does DD find it hard to understand that things aren't hers, or is it just an impulse control override?

@Lougle a new ADM chapter about the LCWRA element was released on 18th August. (Supposedly to clarify when the higher and lower amounts are paid - not that it has for this situation.) You can see it here.

”4. a claimant had an award of ESA which included the Support Component prior to 06.04.26 and continued to be entitled to ESA with the Support Component after 06.04.26 and up to the date on which a UC award which includes an LCWRA Element is made, and the claimant has been continuously entitled to the LCWRA element since”

However, there isn’t complete consensus on this. Some still believe this only applies if ESA is actually being paid. See this Contact page and this one. I suspect it is such a small number of claims; it hasn’t really been considered. There may well be some case law at some point.

I wouldn’t query it because some are being awarded the higher rate. Do you know it is because she has been classed as a pre-2026 claimant? DD2 may qualify under the SCC, anyway.

@drspouse I’m not surprised you are exhausted.

@PurringTiger yay for an open laptop.

She has zero impulse control - she says "it just told me to take it". Wants to buy something in every shop. Had a full blown tantrum when out browsing with DH in the summer because YOU DON'T KNOW HOW SHOPPING WORKS.
Still taking money from us, can't remember if I said but she was putting it on her lunch account to buy extra food for a school friend.

It's very unclear, isn't it? I've raised it as a query on the journal already, unfortunately. I'd rather have a record of their decision either way, and then if it is decided she should have been on the lower rate I can challenge it if/when a situation arises.

Honestly, I haven't had anything about the decision to award LCWRA in writing until today. I only got told she was in the ESA support group verbally by phone a few weeks ago when I got a vague letter that said a change had occurred and they still couldn't pay money for ESA because it was credits only.

@Lougle it is typical DWP, isn't it?

I’m a little concerned about DS1’s Motability open policy.

I know someone who has had their open policy withdrawn because although their DC needs 24/7 care, they don’t have 24/7 paid care and the rules have changed.

DS1 needs 24/7 care. He has a large care package and will when the LA finally gets their act together (they haven’t yet finalised the amended EHCP and are in breach of the Tribunal Order now) a large EOTAS package, but he doesn’t have 24/7 paid for care.

If DS1’s open policy is removed, it will hit us hard. DS1 uses it for his EOTAS package. If the open policy is withdrawn, that won’t be able to continue. The LA providing transport won’t be simple because of the adaptations DS1 has and his specialist car seat.

If the policy is a widespread change with no consideration of individual circumstances, it is going to punish unpaid carers. It will affect disabled CYP more than adults, I think.

@roaringdragon is the car not a WAV? They can make exceptions. DD3 was going to need a business use policy, and although 'computer says no', they agreed it was stupid and allowed it.

@Lougle DS1’s Ford Tourneo Custom isn’t a WAV. Although they are available as a WAV, ours isn’t one. At the time we ordered, they were on the car part of the scheme for cheaper, even taking into account the cost of the adaptations including a hoist in the boot and his swivel seat that comes out of the car, than what it would have cost as a WAV. Since DS1 hates travelling in his wheelchair (hates his wheelchair full-stop really and prefers his SN buggy), we decided to save the money.

@roaringdragon I can just imagine a few people sitting in a room with their mocha lattes, discussing potential changes "Well if they needed lots of carers they probably live in a care home." "Not all of them though?" "Mmm, yes, perhaps we could add a clause to say that if they have paid carers 24/7, they can keep the policy." "What about the ones who don't have 24/7 care but still need carers whenever they go out?" "Ok, we'll add a clause for them. Let's say if they have a WAV they're in..."

It's so stupid. Shortsighted. Is it worth highlighting it somehow? It must be an oversight.

Just hopping on to send hugs or honks to those who need them. I include myself in that category.

So much happening in the Pub, a lot of acronyms, that hurt my brain.

Sorry to everyone dealing with difficulties such as ongoing health struggles of DC and behaviours and never end bureaucracy and stuff.

I’m not sure how College is going for DC. I still feel it’s early very days. The subject reduction helps a bit but it all still feels overwhelming. I had my thyroid appointment with the GP and ended up asking her if I was going mad. It’s hard to explain this parallel universe to those who have children who are able to just go to school and proceed through the education system. You just adapt and don’t realise the huge amounts of scaffolding, adaptations etc that you provide.

Talk of pensions makes me realise I’ll be 60 soon and a big part of me feels I haven’t really lived a big chunk of my life. I’m somehow only just surviving it!

My GP was her mother’s carer for 10 years, and worked part time. (DM had a serious, very dependent medical condition.) My GP gets it, about what carers go through.

@LathkillDale

Thank you.

I find it validating and affirming when others instinctively ‘get it’. And a comfort too. It’s why the Pun is so helpful.

I’m not sure this GP gets me well. It’s an online short appointment but when I asked her about the patients she sees and how she feels life is generally for people as a baseline or whether it’s more me that doesn’t cope well, she reaffirmed she doesn’t know my personal circumstances. But she did say that modern life is very odd and as humans we just haven’t adapted at the pace everything else has.

We require basics like sunshine, downtime, solid nutrition, sleep, connection with life via others, passions/interests etc. She did say that’s why she feels there’s a big spike in ND as life is so different now from what humans require/were designed for. I’ve hinted to her at my possibly being ND although it could be burnout, menopause, CPTSD or a combo of all. I have no idea and no capacity to find out. I do think my autoimmune issues stem from ongoing stress though and unfortunately this feeds into being generally less resilient to life stuff too.

Sending you hugs back @Fizzfizz I hope college settles down.

Glad DD2 is improving @Lougle.

Hope return to study goes well @PurringTiger

Sorry it was difficult @drspouse

Had 2 electricians in all day today and they got everything they needed to do done and DS allowed access to his bathroom. So we have boiler switch moved and plug waterproofed, all bathroom sockets moved to cupboard, 2 new lights and switches in bathroom, laundry room old plug moved for tumble drier, new plus for washing machine, light in laundry room, light in upstairs bathroom and socket fixed upstairs. They will send a quote for jacuzzi bath. DS kept coming to see whether they were finished but he was very good and didn't disrupt their access all day. I have explained to him what they have done and why, the boiler switch had to go above the boiler and they've done fancy things with lights in there which I am not sure how DS will react to. But I've explained why and where everything is now. It was much longer than I expected to do the work and think much longer than DS expected so I hope he will cooperate with the plumber. Not got plumber arranged yet though one is at least back from holiday now. We need to put skirting up and install worktop, cut to size, get sink, taps and support and support for bathroom floating worktop or take down.

The vineyard on Saturday cancelled the volunteer day but am quite glad as doing a lot of physical work at the moment and would prefer to do work here, garden, go out for day or rest.

Pub even! 🤣

Much better day today. DD still giving everyone grief but am trying to ignore. DS at Explorers and I've left him there for a bit. They are all going to Aldi and I wanted to get some snacks so I'm going to a different supermarket by a different route!

@Violasilkie

Thank you! I’m glad your renovations are coming along well and your got the electrical work all done even if it took longer than anticipated.

@drspouse

I’m glad things are better for you today and that you can hopefully ignore most of DD’s behaviour. Sometimes that’s the best course of action to take.

@drspouse I’m glad today has been better.

@Violasilkie your renovations are coming along nicely.

@Fififizz sending a glass of your tipple of choice along the bar your way. Feel free to shout if you want an acronym clarifying. On the note of ESA (Employment Support Allowance), if you haven’t already, you (or whoever DS’s appointee is - I presume he receives PIP and has one?) should make a credits only ESA claim.

One of the GPs in my practice ‘gets it’. She is wonderful at adjustments too. She sent us photographs of all the staff. We have more contact with hospital teams, so if we have an appointment at the GPs and DS1 hasn’t seen that GP surgery member for a while, we look at them prior to the appointment. We also have photos of each consultation and treatment room, and she sends me updates if the room is redecorated or rearranged. And when she did a home visit, she sent me a photograph of her car so DS knew what car would be coming. It started when DS1 had a meltdown because a desk and couch were in the wrong place and it was not what he was expecting. We have other adjustments too such as waiting in the car and them calling my mobile when they are ready for DS and if they are running late, they will see DS1 out of order ASAP.

@Lougle it’s almost like disabled people and their families don’t fit into neat boxes. Shock! Who knew! I’m not convinced it is an oversight. I think the intention is to save money. I’m not going to raise it until when/if we’re contacted about providing evidence of 24/7 paid for care, I don’t want to draw attention to our case. I have worked out for 45 weeks per year DS1 has (will have!) 99 hours of support per week - 50 hours of provision as part of his EOTAS package (direct provision, extended lunchtimes and travel time), 25 hours of daytime care (well it’s 50hrs but 2:1) and two 12hr waking nights. So we are 69 hours short of 24/7 paid full-time care.

@drspouse get all the snacks!

@Fififizz GPs are a mixed bag. We have a couple that we tend to see for DD1. DD2 saw a GP last week who is very experienced, very well meaning, but insists that it's better for DD2 to speak directly to her. Last week DD2 just sighed, took a deep breath and said 'can you just talk to my Mum? I'm just so tired.', and she relented after giving her a lecture on why it's better for her to speak and that she must correct me if I'm wrong. Afterwards, she said "that lady has a very intense stare and she's quite intimidating."

@Violasilkie well done for getting everything finished.

@roaringdragon get back in your box. 69 hours short. Shame on you.

@PurringTiger I'm glad the laptop lid opened! Small steps.

Today has been hard for DD1. She's been feeling quite wobbly and struggled at hydro today, asking for the session to end early. She found it too hard to open the car door (she struggles due to it sliding and the incline of the drive, but can normally manage) and later lost her balance and hit her head quite hard on the door. She's been very distressed with tummy pain again today and asking to go to hospital.

However, after my long detailed email to the day centre last week, with no response, I got a response today. It was very thoughtful and as I read it I thought they'd be turning DD1 down (so often 'she sounds wonderful' is followed by 'no'), but he asked some follow up questions and invited us to visit.

DD2 continues to amaze at college. Yesterday the TA who had mucked up last week was much more considerate. Today, DD1 had 1:2 support, plus another 2 students being kept an eye on, but she was fine with it. She sat next to a girl in class who she had chatted with yesterday, and spent lunchtime with that girl and another girl. She said it felt a bit weird, but it was ok! I'll take that.

DD3 is exhausted. School are managing it well.

@Lougle I did, plus a nice breakfast for me tomorrow!
DH is going to my mum's tomorrow to oversee a valuation so I'll be lone parenting (but it's not that arduous as they are both in school and it's my day off). But I'll have to get up early to see DD off and take DS in.

Do any of you have any bright ideas for DS and his PA? PA won't swim, we would like DS to try the gym but he's not that keen. DS likes bowling but it's expensive. They used to just watch TV or play on his console but now we are trying to get screen time down, and Friday is our movie night plus it's a PA day. Tuesday is the other PA day but DS is happy to chill/draw/make paper airplanes in the evening as the PA is a good gaming partner and he gets it out of his system.

@drspouse

In no particular order DC has been into climbing/climbing wall, war-hammer painting and gaming, pool/snooker, boxing, biking. Not sure if any of those are doable or might appeal to DS.

@roaringdragon
Thank you. I’ll look into ESA, was totally unaware of it and haven’t heard of it before.

I hope you can get the insurance resolved or fly under their radar instead.

It shows that those who genuinely get it can make such a huge difference to our lived experiences with the small things that they do. It’s a pity LA’s and others who are supposed to get it can’t operate in a similar fashion but we all know that all they seem to care about is their budget.

She sat next to a girl in class who she had chatted with yesterday, and spent lunchtime with that girl and another girl.

@Lougle oh wow. This is amazing.

I hope the social care day centre visit goes well. Sorry to read DD1 had a difficult day.

HCPs who insist on speaking to DC despite DC making it abundantly clear they want you to speak for them are infuriating. So much for listening to the patient.

Can you imagine the ICB’s reaction if I requested a big increase in hours because they are needed in order to satisfy Motabilty? I’m sure it would give the, a chuckle.

@drspouse enjoy your day off tomorrow. Do you have an activities budget?

I’m afraid much of what DS2&3 do with their PAs costs more than bowling. They do things like climbing, golf/crazy golf/footgolf, skiing, water sports, cricket nets, football, tennis, badminton, trampoline park, inflatable park, ninja warrior, games cafe, escape room, cinema, steam train, etc. The no cost activities they do include bike riding, one specific park with equipment for older DC/adults (but only when it is quiet for DS3) and a kick about. Their activities budgets pay for these. Or they make use of their swimming/gym/courts membership (funded by their EHCPs). DS2’s PA goes to the gym with him. DS1’s carers don’t always take DS1 out. When they don’t and aren’t doing more care related tasks, they do things like play with Lego, sensory toys/equipment, other sensory play, play with trains.