The Goose and Carrot July Edition

[Lougle]

All welcome, and everything disappears after 90 days.

Thanks @Lougle Well done on double glazing fixed.

Heard back from shed company that they can do mid October but DH is now wavering about whether to get or not and said we should try asking DS and is worried DS won't cooperate with old shed coming down. I need to pay a deposit for shed if order now but would prefer to get on and order it if that's what we are going for. I am worried DS won't comply with old shed being taken down and not sure what to say to him. We would need an asbestos company to take roof of at least. He might well cooperate with roof and then potentially could take rest down later by ourselves. And just have a temp cover on roof. Am not sure if he heard us discussing it as DH was being loud. I was trying to subtly arrange something. I think DS will like the new shed once its up but he will hate old shed coming down and may obstruct it again. That firm said we must make sure he cooperates next time.

@Wellzizizbetter in the past, it was easier to get personal welfare Deputyship. Then the CoP got a bit more stringent. Recently there was a case (Re HB (Appointment of Personal Welfare Deputy) [2026] EWCA Civ 960 if you are interested) that should make it slightly easier again.

Deputyship hasn’t come through yet for us. It shouldn’t be much longer. It has been straightforward enough for us so far, but we had very strong evidence and support from multiple professionals across different agencies. It wouldn’t have been so easy without that.

We won’t need property and financial affairs deputyship. Being appointee will suffice. DS1’s only income is benefits and he doesn’t have any other capital except a CTF with a relatively small amount in. I am hoping the provider will agree to release the funds to me (some will, some won’t. Industry Standards allow them to.) or the situation of disabled YP and CTF/JISAs has been resolved nationally. If not, we will need to make a single-issue application to the CoP.

I don't know what to do with DD1. She's been complaining of pain in various places for days. I took her to the GP today and he basically said there was nothing he could do. She sitting in a chair, sobbing, saying "it shouldn't hurt when I breathe". She's clearly in pain but I just don't know what I can do, which makes me look (to her) like I'm refusing to help her. Naproxen, paracetamol, codeine.... None of it helps (so I don't give codeine). I have morphine but that doesn't help either so I won't give it. No distraction measures help. She won't wear her TENS machine (says it doesn't help).

Also, I mucked up the fridge freezer order so it isn't coming tomorrow now. It was only once we had emptied the old one and moved it outside (no mean feat) that I looked at the doorway and realised that the new one is too wide to fit through, so I need to pay for installation so they can remove the doors. They're happy to do that but not until Saturday.

ITA. It’s best to go for walks at flat places. It’s quite hard, pushing an adult uphill!

@inthequietofdawn are you saying a health and welfare isn’t necessary? And that appointee is enough if just benefits? (Side question if ds was to inherit some money could we apply afterwards or should it be set up ahead of time.). What I’d like is to continue making all decisions for him going forward. I am sure this is in his best interests and one of his siblings would take over if dh wasn’t able.

@Lougle what do you honestly think is causing the pain? You are probably best placed to guess.

@lougle will DD1 be seen in the pain clinic again or was she discharged? Did the injection help?

@Wellzizizbetter no, that isn’t what I said. I said property and financial affairs deputyship wasn’t necessary for us because being appointee will suffice since DS1’s only income was benefits and the only capital he has is a relatively small amount in a CTF.

It is personal welfare deputyship we have applied for.

It would be better for inheritance to be left in a trust then the trustees can manage it. If it is left to DS directly, you would then need to apply for property and financial affairs deputyship (or a one off order depending on the amount you are talking about) if DS doesn’t have capacity. I wouldn’t apply on the off chance DS may inherit one day because you would be adding to your workload - not just the application but the ongoing paperwork. If DS receives an inheritance, depending on the amount you are talking about, his UC may stop and he may have to fully fund any social care support.

If you want to be able to make welfare decisions, you should look at personal welfare deputyship.

If you go down the deputyship route and need to replace a deputy or deputies at some point, it isn’t as simple as saying someone else will take over. You have to apply to the CoP.

@Wellzizizbetter I don't know. My gut instinct is that she has a combination of structural issues and nerve pain. I don't know what can be done about it though.

I had to nip out earlier and she sent me some very panicked messages. I phoned her and told her that I loved her and I didn't want her to die, so if I thought she would die I'd be racing her to the hospital, and that the GP didn't want her to die, so if he was worried he'd be calling an ambulance. She whimpered 'so you don't think I'm going to die?' I repeated it a few times, like a social story, then she yawned and said she was really tired so would try to sleep if I was sure she wouldn't die.

@inthequietofdawn the LD nurse is going to write to pain clinic to say that although she fixated on her abdomen when we saw them, there's a lot more to deal with and could they please do something.

The MRI results are in and it's stable so no treatment needed.

We have set up a disabled person’s trust in our will for DD1; and one for DD2, if she is suffering a recognised mental illness at the time. We asked DS and one of their cousins to be trustees. He’s an accountant and she is running a multi million pound business.

It’s a long time ago, since I visited deputyship, but iirc, it’s better for say the parents and the two people, they wish to take over on their deaths, to apply as joint deputies from the start. That way, the next generation are already deputies, rather than having to do the application forms and fees all over again?

We have set up disabled persons trusts, too. Well, except that we haven't had the new will that includes DD3 in a trust witnessed yet because we're not totally sure about the decision of trustees. So if we both died tomorrow, DD1 & DD2 would have their inheritance in trust but DD3 would inherit directly... Need to sort that. Although, it would only kick in if we both died because if just one of us died, the other would inherit. We don't have particular assets so it's not complicated.

I'm waiting for LPA docs for DD1. DD2 will make a LPA soon.

@Wellzizizbetter different gosling different goose to give you another example: LPAs for health & welfare (no family but if there was someone they would be appointed). Lawyer was clear that we do not have enough assets/money to warrant the cost of a trust. Lawyer conducted a capacity chat (test) for LPAs. Lawyers aside I think trusts as a tax haven will be removed but disability trusts will remain. LPAs are c£100 each (health & welfare) to lodge without a lawyer. It’s a relatively simple first step if your DS can understand that someone needs to help with financial decisions on his behalf - if so get the financial LPA in place for you, DH and the third person that loves him.

@Wellzizizbetter wanting to make all decisions going forward for DD was my driver too. The decider was the capacity test on the route forward. LPAs or Deputyship. Inheritance is a separate issue and so subjective to amount v welfare v cost of a trust against being discounted from benefit calculation. I’m still unsure even after a lot of money spent on legal advice.

I personally don’t think ds has capacity for a lpa though I could explain it to him and he would surface understand. He is very stressed by very simple choices and is far less able than he appears in some ways.

Either we carry on with me as his appointee and health accepting my managing things (which everyone does) or we formalise things. If he couldn’t be cared for at home within the family (eg if dh and I died and his siblings couldn’t manage his care at home and maintain their own lives) then I’d expect them to find the best residential placement they could and I know they’d visit him. It’s reports of people being kept from their family members here in the uk that I find terrifying.

It is terrifying. I can see why any parent would want to do the difficult decisions and not potentially leave the thinking/decisions to their more able child/relatives. If siblings weren’t coping and residential was needed I guess the question is does deputyship give them the right to visit or have a say in the placement any more than an LPA would.

If deputyship doesn’t allow you to choose where you live what is it for?
Inheritance is the same issue simply because I can leave ds funds to support him in the future OR I could leave them to his siblings to support him with. I’ll be damned if I scrimp and save all my life to pay for someone to keep him locked away from his family in some “home”.

It's interesting. I thought DD1 wouldn't have capacity but the psychologist asked her some very simple questions:

Property and finance:
"DD1, Mum and Dad help you with your money. Do you want them to?" DD1 said yes, I'll always need help.

"Would you want them to stop helping you?" DD1 said No, I'd spend all my money on chocolate.

"Would you want someone different to help you with your money?" No, I want my Mum and Dad.

Health and Welfare:

"Do you want Mum and Dad to help you with decisions about who looks after you?" Yes

"If Mum and Dad couldn't do that would you want Nanny and Grandad to?" No, they have enough on their plate.

I might have paraphrased a bit. But it was very simple and the conclusion was that DD1 knew she needed help, wanted us to help, so has the capacity to make an LPA even though she doesn't have capacity to manage her own affairs.

Thats exactly what I meant by ds could understand in a shallow way. The difference is he wouldn’t go beyond monosyllabic answers and I’d probably have to rephrase the questions and interpret the answers for him. I know perfectly well he wants me to “do the choosing”.

My understanding is that the rights given by LPA and Deputyship are the same, but the responsibilities are different because the Deputyship is court appointed without the consent of the subject and LPA is voluntary.

https://www.gov.uk/government/publications/deputy-guidance-how-to-carry-out-your-duties/sd4-how-to-be-a-health-and-welfare-deputy-web-version

Basically, a LPA/Deputyship gives you the right to be involved in the decision about care. However, it doesn't give you the right to make unilateral decisions. If social services are paying for the care, you can't force them to place your child somewhere they're not willing to pay for.

I don't want DD1 to be 'locked away from family in some home'. It breaks my heart, but I've had to accept that she will need residential care.

Glad the MRI is stable @Lougle.

Green / blue bin lorry has got through and collected those which is hopeful for at least the black lorry getting through after 4 weeks so another weeks time.

Have worked out a plan for the shed with DH which we have agreed on. We will order the new one but will get the asbestos roof taken off old one first and put a temp cover over it. I think DS would obstruct the whole shed coming down but he may tolerate the roof coming off and that part we need someone else to do. The rest we can do ourselves and leave old shed up right until new one. He's always responded very positively to all the work I've got done on house and garden but he finds change difficult and also doesn't want to be without a shed for a period but we can't risk going right up to wire on removing old one as he may obstruct. I think we will tell him things in stages so he doesn't get overwhelmed so will just say about the roof initially. I really hope he doesn't obstruct that but that's why I'm holding on paying deposit for shed. I've e-mailed the asbestos company and hopefully they can come very soon - we need to also level the ground in the 45cms behind the shed so will get soil or similar for that, and temp roof cover. Then new shed should be here mid October ish depending on when we order.

@Lougle You, as parents could take the question of placement to the CoP. It’s supposed to be a collaborative process, and decisions have to be made in DC’s best interests. The judge will want to hear DC’s views and meet DC. The Court will seek independent professionals’ up to date reports on what DC needs, although it may not be possible to get them.

It depends on how good your evidence is for the placement you want, and to a lesser extent, your ability to argue for it clearly, while demolishing rubbish evidence from SS and/or the ICB! You need your wits about you!

Also, you need to show, you are acting just in DC’s best interests, above all.

I think the key is identifying the difference between LPAs/Deputyship and if there are any differences that are better/worse for an individual gosling then go that route. If the LPA route is no different to Deputyship on the points that a person is being protected on (residential care choice etc) then LPAs will do. LPAs are relatively easy, I wonder if you can have LPAs then change to Deputyship in the future?

@Tulipandmagnolia thank you for all of the lovely suggestions for DD, I’ve banked them for the future.

Yes I do understand that @Lougle (and of course we all want our children to be kept from their family). For a different person residential might be a very good solution and support their family unit. That’s absolutely not the case for ds. He is not suited to it for lots of reasons, but also it’s not what we as a family would find easy comfortable or workable. This makes future planning difficult. I want what will keep him safe and be the best use of the resources I DO have. Life was considerably simpler before brexit, and some other industry specific difficulties.

I've just been reading about Lisa Hayden-Johnson and her conviction for Fabricated or Induced illness against her DS. It's a terribly sad story, but I do wonder how she managed it, given that I've spent 20 years trying to get DD1's legitimate issues taken seriously. It's bizarre.

DD1's Psychiatrist will change on 21/09. So that's sorted.

I've now been told that there is no official event tomorrow, as there was last year, but staff will be there for results. Time unknown. Crazy stuff, if you ask me.