Liz

@mailliw Great to hear she’s had a promising day. xxx

@lizjonwilltom Thanks. Just read about that and will do. She had decompressive surgery at ~48h but will mention this. She isn’t yet stable enough for an MRI which would yield more discoveries for causes but she’s had a v promising day today so are moving in the right direction. Thanks for msg x

Dear internet. My darling four-year-old is fighting for her life after a massive stroke 8 days ago. She has Down’s Syndrome but has until now been living a normal, happy, joyful life with her mummy, dada and brother. I need hope. I need examples of recovery from similar cases 🧵

@mailliw Please do!

@lizjonwilltom I see you’re in York. We had a holiday booked for York on the day after it happened. If we ever make it back I’ll send you a note.

@mailliw If your hospital team haven’t already mentioned it, please ensure that they have looked into the possibility that the stroke was caused by Moyamoya. It’s very rare but more common in those with DS, and surgical treatment is really important to preventing further damage.

@mailliw Wishing your little girl all the best. I know two families who have children with DS who have had strokes. Both had Moyamoya disease and underwent neurosurgery to treat it. Whilst still affected by the strokes, both young people live good lives from what I understand. Xxx

@Morrisons this substitute is around £25 more expensive… (even if we did want beef rather than lamb, that’s one expensive substitute!) Looks like I’ll need to go out shopping for dinner despite the impending delivery…😢

However the new proposals to not enable UC for under 22s will leave poor families even worse off… If a disabled 18 year old will never be able to work, or go to university with a student loan, they are left with only PIP as a means of support for absolutely everything.

The cliff edge is real! Families of disabled children aren’t aware of the need to apply for a ESA credits only award to establish (in)capacity for work as soon as possible after a child turns 16 in order to circumvent a wait and huge financial loss when the “child” claims UC.

@YorkDisability Access to Child Trust Funds for young disabled people is a real problem. Will be in the same position for our son’s CTF next year. (In this link Child Trust funds is confused by mention of the disabled persons trust.) Follow @contactfamilies @AndrewofSussex for info on it

We’re locked out of our disabled son’s £5,000 trust fund – it’s so unfair inews.co.uk/inews-lifestyl…

With @firstyork4 visiting @PfkcR. Having a great day out.

Important @NIHRresearch funded project about experiencing social care complaints led by @FRibenfors is recruiting for participants... details below.

@MartinSLewis @Ed_Miliband Our order of 500l booked for Thursday 5th and bought at 60.75p per litre plus “admin fees” hasn’t arrived. We are now below 1/4 of a tank. Thermostat down, and log burner on.

Just got off the phone after @Ed_Miliband called to discuss in detail the problems people are facing with domestic energy bills and heating oil. Here's what I fed through - your feedback would be useful... 1. HEATING OIL: This is the most immediate concern as many, often in rural areas or N. Ireland, are refuelling their tanks. Prices have rocketed, a few even suggest they've nearly doubled in a week. My biggest concerns are... a) Those who can't afford the new price b) Lack of specific regulation as heating oil isn't covered by Ofgem (though that's a longer-term issue) c) Some have anecdotally reported existing booked-in orders being cancelled, and being asked to rebook at much higher prices. I want to firm up whether this is widespread... I'd like to hear specific examples of how much prices are rising, especially of point c) and will pass them through to the Department for Energy. 2. CONSUMER GAS & ELECTRICITY BILLS: This is less imminent, but a potential ticking cost time-bomb. I'm focused on the Eng, Scot & Welsh system here... - In the short term: Most bills are protected from the spike in wholesale energy prices as the Energy Price Cap is set based on a significant time-lag. In fact it is locked in to DROP 6.7% in April. Those not on the Price Cap are mainly on existing fixes (which, due to unprecedented prior policy changes, will see most suppliers cut existing fix rates on 1 April, typically by 7% to 9%) so are also price protected for now. One current concern is the lack of availability of cheap fixes. While that's frustrating, in the short term it means those whose existing fixes are ending, will just (hopefully temporarily) need to move on to the Price Cap. There are also a minority of homes who are immediately affected, eg, those on time-of-use tariffs. These include Octopus Agile & Tracker, which move half-hourly or daily with wholesale rates. These are sophisticated user tariffs, and if necessary people have the short term option to switch back to a Price Cap tariff (though do check for restrictions on how long before you can switch back). So while none of that is great, it isn't crisis point. - The end of May is likely crunch time: This is usually when the next Price Cap (July to Sept) is announced. It currently seems very likely it will rise, though just how much all depends on how long lived the current energy price spike is. Yet the key is whether wholesale rates have dropped back down or not by that point. If they have, while the Price Cap rise will annoy many, it won't be critical for most for two reasons i) The July to Sept Price Cap is usually the lowest use period. So, even if typical use rose £200/yr, in practice this'd just be, at a guess, an extra £30 to £40 paid over the period. If by then wholesale rates are down, a substantial cut would be expected for the next (Oct) Cap. ii) The rate new fixes are set at is based on wholesale rates, so if wholesale rates have dropped by then, the big push should be to get people off the Price Cap and onto fixes which could possibly look to be 20%+ cheaper, avoiding any price hike. That should then leave only those unwilling or unable to switch paying more - the latter is an issue the govt would need to concern itself with at that point. Yet if rates haven't dropped back down by May, and it looks like it'll stay high so the October Price Cap will rise too, and no cheap fixes are available, then things get into real problem territory. The government needs to be (and I suspect is starting to) planning now for that eventuality in case more hard-core intervention is needed. Martin PS I said I'd be off socials for the weekend, as normal, but thought this was worth coming back on for. I'm now resuming my weekend break from socials.

@ComradeRedJimmy @MikScarlet It is limited to what’s on the motability list of cars. The majority of listed cars require an additional payment up front which is not returned. These payments are increasing and can be several thousand. The “ap” changes every quarter.

@MikScarlet Lack of choice? How so?

The public moan about Motability but little do they know. The free car that costs over £80 a week that you never own. The repair service that can cancel on you at any point. The lack of choice for vehicles that suit your needs. This will be the last time I hire through them.

@MikScarlet Honestly, not sure many of us Yorkies actually go into York itself. To be honest it is much easier for us to travel to one of the smaller surrounding towns… Our dentist and opticians are in Selby, and we get as many of our sons hospital appointments as we can in Selby as well.

Must say that all this people are less friendly in London stuff is rubbish. Some people in York are lovely but some walk straight at me like I don't exist & make no effort to move, meaning I have to. I've had one sorry but that's it. I wonder is it tourists, like Camden 🤣🤣

@grok @Folahanayo1 @OliLondonTV Utter rubbish! These are definitely Hull City football kits! Where does it say “we are Wolves!”? See the current hull city kit… tigerleisure.com/replica/home-k…

@lizjonwilltom @Folahanayo1 @OliLondonTV Thanks for pointing that out! But looking closely at the video, the kids are wearing orange and black kits matching Wolves, and the wall says "WE ARE WOLVES," so it's likely from their stadium. Maybe confusing it with the recent Hull match? What makes you think Hull?

Chelsea football players completely IGNORE children waiting to see them. The footballers have been slammed online after refusing to even acknowledge the children as they excitedly waited to see them.

@grok @Folahanayo1 @OliLondonTV The kids are Hull fans not wolves.

The video captures Chelsea players walking past young mascots (in Wolves kits) in a stadium tunnel after a match, with most not interacting or acknowledging them, sparking online criticism for seeming rude. The kids look excited and lined up, possibly as part of their mascot duties. While players aren't required to engage, a quick wave or smile could build goodwill—it's a missed opportunity for positive fan interaction in my view. What do you think?

I wonder how many such “schemes” to evidence disability are out there and how they’re utilised across the UK…

He used to have a CEA card for the cinema (£6.50), to enable a free carer but I didn’t renew it. One isn’t required at our local cinema, who (whilst recommending them) accept other forms of evidence of need.

Requirements for a specific access card issued by @nimbusdis are becoming a focus of concern for those needing disabled access to venues. Unfortunately venues are increasingly making their card (£15) or a free digital venue specific type of pass, the only disabled access option.