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.

I watched a video on catatonia and the professional there said all that is left is the body and that refusing treatment is normal for catatonia which was interesting as I was made to feel it was my fault and I should be able to persuade him. AI said that maybe the brain pathway for movement has unblocked but the brain pathway for speech and writing is different and still frozen but don't know if there's any possibility of that. It also said he's refusing all interaction as he's on limited energy and in survival mode. But it's his eyes that freak me out. And he doesn't especially appear limited energy.

Thanks @Lougle I had a bad experience once where I had been mugged and head cut open, went to GP and then applied for criminal injuries compensation scheme and they contacted GP who said they had no evidence of it happening so got refused. Even though I had been in hospital and to see them for stitches out. I appealed and won but now am very wary of not informing GP. But also stressing myself out about the call. Though think now he's an adult and deemed capable it's all on him officially.

@PurringTiger if the other suggestions don’t work, would changing travel agent to someone else help?

@Violasilkie lots of GP practices have one specific GP who deals with all DWP requests even if the patient has put one of the other GPs down &/or has another GP in the practice as their named GP. While PIP can contact GPs, they don’t often for PIP IME. A GP letter isn’t likely to be particularly helpful if DS hasn’t seen them in years.

Today’s email chasing the LA is about two of the new elements of DS1’s package. One is a one-off piece of equipment. The LA wants to procure it themselves rather than provide a DP. Fine, just get on with it rather than deploying delaying tactics because it is an expensive piece of kit you resent having to pay for. The other is a new tutor. The LA thinks £45ph is enough. This is for a SEN specialist teacher. No-one with the training, qualifications and experience in DS’s EHCP is going to work for £45ph. The LA has also ignored all the on-costs.

Thanks @roaringdragon I was just concerned as I read on here that PIP assessors only consider last 12 to 18 months for evidence as need current state. We obviously have very strong evidence from 2023 and 2024 but after that it's just the key worker service until end of last year / early this year who said they don't do reports before and aren't normally named. I have some emails with them but it's proving other than us saying he still can't talk or write. I have found it the past parents word doesn't count for much though TBF that wasn't pip. But getting a professional to repeat the same on headed paper seemed to work.

I don't know if GP knows about key worker. With my cancer treatment they had very few records and would ask me to repeat blood tests I had done that week as they couldn't see results. Though may well be a letter is a waste of time and they may not offer anyway. I may just send an update to them.

@Violasilkie While a review does look at the current circumstances rather than the historical picture, older evidence can still sometimes helpful. It depends on what it is and the individual circumstances. If someone had recent evidence, they should prioritise sending that (although may still include relevant and important historical evidence) but a lack of recent evidence doesn’t prevent someone’s claim from continuing.

With regard to the young man, who jumped into the tiger enclosure, I said to DH on Saturday, that I didn’t think he had learning disabilities, because there would have been one or more carers with him. There weren’t, so he must have been deemed to have capacity; and the other most likely group of people to do that, would be suffering from psychosis (and maybe schizophrenia)?

I watched the video of him online last night of him in the enclosure (but not his death) and he didn’t seem to have a clue about what he was dealing with? He sat down and was gesticulating, which imo would trigger prey behaviour - I doubt anyone would stand a chance with a Siberian tiger, but in Africa in the event of bumping into a lion, the advice is to stand still (as animals see taller animals as dominant), keep still (so as not to trigger prey behaviour) and scream (lions don’t like the noise)! Lions don’t like the smell of white people either, it’s something to do with our diet!

He could have been suicidal, but if someone were, they wouldn’t be calling it a naughty tiger - they’d be in touch with reality, and expect it to kill them. I could only assume he was in psychosis? The question is then - was he taking his medication, and if not, why wasn’t he on the injections; or if he was in an acute episode despite the drugs, did anyone know about it? Where was the supervision - although I know in reality, here people are sectioned, discharged into their council flat, where they live on their own and under no supervision by MH HCPs, until they have a psychotic episode again in public, when they get sectioned again! It depends on how involved the family are, and what they do in a crisis?

TBH, DD2 was better and happier in one MH unit, than she is in real life. She had company all day, three meals a day, proper sleep at night….None of which she gets in real life!

Not focusing on that specific case but speaking generally, not all adults with an LD have carers with them all the time or even most of the time, so no carers with someone doesn’t necessarily mean they don’t have an LD.

Thanks @roaringdragon

Yes @LathkillDale I think it's been confirmed no learning difficulties, schizophrenia diagnosis, meds but no care as bright and appeared functioning. Mentions a job but self employed online trader which could be nothing much. It didn't look like suicide as he was dancing before and sounded happy so either psychosis or no sense of danger and a love of tigers. But just made me think as DS behaves like that with animals and climbs anything, fortunately obsessed with llamas, penguins, pandas not tigers. DS hated hospital but I think him being taken in handcuffs and forced drugged was largely why, otherwise it was just like a boring Travelodge. But he doesn't mind that. It concerns me the it's up to them part and the way they can be left in flats but it's balancing things so they have as much freedom as can safely manage. Though reading more he's different to DS as he was much more social and did some acting but I still thought gosh if DS had gone to zoo alone would have thought he was doing really well and looks how it ended. Not that there's any possibility of that though we do have a zoo walking distance.

Looked up keyworker service and DSs keyworker isn't there anymore but the helpful lady her manager is. I am not sure if DS is still on the at risk of readmission register, think he might be unless they took him off it after we left.

Yes, I know there are people with mild learning disabilities, who don’t need carers; but surely they would be high functioning enough to understand tigers are dangerous and wouldn’t jump into an enclosure with them, unless they had a death wish?

@Violasilkie do you mean the Dynamic Support Register? If so, DS/you should have been told if he was removed.

@LathkillDale as I said, I wasn’t talking about that specific case. The coroner said he had schizophrenia and previous bouts of psychosis. They didn’t mention an LD. And I’m sure his parents and wider family want to grieve in peace rather than be subject to speculation. I was talking more generally about the comment that there wasn’t an LD because if there were, there would have been a carer or carers.

Unfortunately, it isn’t just those with mild learning disabilities who don’t have carers. I have met some with moderate LD without carers or who only have limited support throughout the week. Now one can debate whether they do in fact need care/more care but the fact is some don’t.

An LD diagnosis would be at odds with being considered high functioning.

Yes I think its that one, I'll need to check but think we were told no keyworker but stay on DSR when left.

DS used to do things like say he could walk down a cliff fine or poisonous snakes wouldn't harm him and he's assessed as no psychosis and if that's right it must just be a feeling he is immune. You couldn't reason with him either, you just had to say there was a rule you couldn't walk down a cliff.

@Violasilkie I genuinely think that if you just describe how you communicate with DS, it will be fine. For example "DS can't engage with us directly, or communicate verbally. To be able to fix his electronic devices, I had to tell him that if he needed something to be fixed, he could leave it on the worktop. He gets very distressed if we try to communicate directly with him and can throw things and slam doors to express his distress. He can't tell us that he likes something so we have to observe behaviour patterns to work out if he approves. For example, we buy certain foods and if they are eaten, we know he likes them. We recently told him that we wanted to replace his shed. He didn't verbally communicate but he moved everything back into the shed that we had removed and sat in it, so we knew he didn't want us to dismantle it. Conversely, when we wanted to make changes to his bathroom, he left the door open and allowed us in the room, so we knew he approved."

I think the assessors can tell a genuine application from the language that is used, and there are specific assessors that are used to decide paper based claims where it's obvious that the person has complex needs. I'm not saying that they don't sometimes get it wrong, but I really don't think you're going to have issues because he isn't engaging with the outside world, when you're saying that he won't engage even with you. You can say that they discharged him because he became distressed if they came.

I agree that the family of William Chapman won't want his circumstances debated. It's very sad. In general, complete risk management is impossible and the deprivation of liberty required to completely rule out all risk for vulnerable people would outweigh the benefit. Reasonably foreseeable risk can be managed, but there will always be a risk that can't be planned for.

Thanks so much. I agree that we need to do something like a carers statement though I started it and it sounds horrific, not the day to day but the one off things like taking the boiler apart, flooding the bathroom but all of it together is so unusual I think they probably would believe it.

You need to tie the incidents into the pip descriptors.

I have met people on DD1’s house, who I assume have mild learning disabilities, because they wouldn’t be there otherwise, but really I couldn’t tell in conversation. However, I have never had anything more than superficial conversations with them. Usually, we just arrive to pick DD1 up or drop her off; and then we leave, because it’s a long drive home.

As for the rights of people to live their lives freely in the community, I can’t help but think that’s code for - it’s cheaper to do nothing! The people DD2 has met have not been happy, living on their own. They have great sadness, usually due to unresolved trauma.

DD1 loves animals and I don’t know what she would do in a zoo left to her own devices, but then she is never going to be on her own.

@Violasilkie This. Listen to @Lougle. It is all about the activities, the reliability criteria and the majority of the time. If it isn’t within the scope of the 12 activities, it isn’t considered when looking at the points. It is worth you reading about what actually counts within the activities.

@LathkillDale of course those living with DD1 have been judged to need care, they wouldn’t be there otherwise, whatever their diagnosis is, but that doesn’t mean all with an LD need full-time care or can’t be out in public without carers. That point of mine isn’t about money. Yes, some don’t receive the support they need because of funding, but even with all the funding in the world, some still wouldn’t need that level of care. Just so you don’t think I am ignoring you, I’m not going to reply to any future posts mentioning the zoo incident in any way. The young man’s family deserve to be able to grieve in private. They don’t deserve or need their devastating loss to be compounded by online discussion.

@roaringdragon Ok.

What are “on costs”, you mentioned in an earlier post. There was an argument at our last tribunal about “on costs”, between our barrister and the LA, relating to our choice of a 52 week placement and their suggestion of 38 weeks plus respite. Neither of us knew what they were talking about.

Anyway, the tribunal decided the LA’s idea was totally inappropriate and costs were irrelevant, because only a 52 week placement could meet her needs.

We are both accountants and it’s not a term we use. We talk about

fixed costs and variable costs
direct costs and indirect costs
cost of sales
sunk costs
opportunity costs
contingent liabilities (potential costs)

There may be other terms I can’t remember, in industries, we don’t deal with.

@LathkillDale on-costs are the costs associated with employing someone on top of their wages. Things like tax, NICs, holiday pay, pension, etc.

Thanks @Lougle and @roaringdragon You are both right and I need to be careful to just include relevant to pip criteria stuff and not just waffle on as I have a tendency to as you may have noticed 😂At least I know what I am doing now.

I'd not heard on on-costs either @LathkillDale heard terms like employers additional costs and the ones you list.

DH returned the hire car and walked the 4.6 miles back. He also cut the 2 bits of old worktop we had into 4 shelves and I did the garden, the floors and the silkies coop.

Just sent an e-mail to GPs to give update and also to ask about council tax SMI form - not sure they will accept it as they can be funny about communication methods but we will see. Says no clinical enquiries that way but no other way of sending attachments and its not strictly clinical.

DH just went to put washing on and found DS in the laundry room on a big cushion, his Nintendo plugged in gaming.

No, we wouldn’t bother giving those a name, because they’d all be put in expense headings like “wages and NI’ers” or “pensions” or “staff training”, in the detailed profit and loss account.