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Elderly parents

Consent to see carer notes?

24 replies

rickyrickygrimes · 16/08/2025 20:57

when FIL first started with carers coming to his home, they were competing a paper record with notes of each visit in a folder that stayed in the dining room. This meant that DH and SIL could check what was being observed / happening at the care visits. Since then he’s been changed to a different / private care company. They use online records instead. FIL has refused to give consent for SIL / anyone to have access to these notes which leaves them with just his account of what’s happening - which is not at all reliable. Both SIL and DH have POA, and FIL has a preliminary diagnosis of dementia - but the care manager won’t budge and won’t allow them access to his notes unless he agrees.

is this normal / correct? This is in Scotland.

OP posts:
Longnightmoon · 16/08/2025 21:00

yes it is correct

BotterMon · 16/08/2025 21:05

Yes it is right. All you can do is ask Manager to contact you if they have any concerns or his behaviour changes.

If you can prove he lacks capacity to make this particular decision then his POA would be able to view them but that's not a quick process and the outcome isn't guaranteed.

You shouldn't have been reading his care notes previously. They were for carers to see what has happened on previous visits and monitor any concerns that had been raised.

TheFunkiestofChickens · 16/08/2025 21:10

BotterMon · 16/08/2025 21:05

Yes it is right. All you can do is ask Manager to contact you if they have any concerns or his behaviour changes.

If you can prove he lacks capacity to make this particular decision then his POA would be able to view them but that's not a quick process and the outcome isn't guaranteed.

You shouldn't have been reading his care notes previously. They were for carers to see what has happened on previous visits and monitor any concerns that had been raised.

This, does he have capacity? Is he unable to tell them what's happening, what do they want to know?

Poopeepoopee · 16/08/2025 21:13

It is correct yes.

Why does he have a "preliminary" diagnosis of dementia? As opposed to just a diagnosis of dementia?

hyggetyggedotorg · 16/08/2025 21:18

Well, is the POA for health & welfare? Does FIL lack capacity to make his own decisions?

If yes to both then his attorneys (DH & SIL if both named on POA) can see his medical records.

Sometimes relatives just have a POA for finance though, which has no bearing on medical issues. And maybe the Carers feel FIL does still have capacity?

rickyrickygrimes · 16/08/2025 21:28

Poopeepoopee · 16/08/2025 21:13

It is correct yes.

Why does he have a "preliminary" diagnosis of dementia? As opposed to just a diagnosis of dementia?

He was in hospital after wandering from home and having a bad fall. At the hospital, the dr diagnosed him with early stage dementia but said he had to go through the process of being referred to the memory clinic etc and formally assessed. We are in Scotland: you may have seen the recent headlines that it’s taking a year or more to get an appointment here - it’s been 8 months since he was referred and not a peep. His medical notes (which he did give permission for SIL & DH to see because he can’t read or understand them) state that he has early dementia and cognitive decline. SIL and / or DH were present at all meetings with discharge coordinators and care managers as FIL cannot manage these conversations as they happen, and he cannot reliably repeat anything afterwards, so we really rely on written notes just to keep up with his evolving situation. SIL accompanies him to all medical rdv, with his agreement, as he would not get there otherwise and would not understand or remember what he is being told.

OP posts:
rickyrickygrimes · 16/08/2025 21:51

hyggetyggedotorg · 16/08/2025 21:18

Well, is the POA for health & welfare? Does FIL lack capacity to make his own decisions?

If yes to both then his attorneys (DH & SIL if both named on POA) can see his medical records.

Sometimes relatives just have a POA for finance though, which has no bearing on medical issues. And maybe the Carers feel FIL does still have capacity?

and yes it’s POA for everything, they are doing everything for him now - except for the hands-on support that the carers are now giving.

OP posts:
hyggetyggedotorg · 16/08/2025 21:56

rickyrickygrimes · 16/08/2025 21:51

and yes it’s POA for everything, they are doing everything for him now - except for the hands-on support that the carers are now giving.

Then yes - they can access his medical record. I work at a GP surgery & that would be enough to allow DH & SIL access. Community care records are generally quite boring (I used to work in that field too) - things like “meds given, meds refused, pad changed, assisted to shower & dress, porridge for breakfast - half eaten” etc. I’m not sure why they aren’t willing to share that.

FiniteSagacity · 17/08/2025 00:10

I wonder if the care manager should be asked to visit and do a capacity assessment themselves and consider the point about FIL being unable to ‘…understand or remember what he is being told…’. Surely it is in his best interests to work with the family propping up his independence and actively involved in his care alongside carers.

We still don’t have a diagnosis of dementia after a year in a nursing home so you have my sympathies on the pointless barriers this causes.

AnSolas · 17/08/2025 01:16

Another point is who is paying for the contract and is a party to the contract.
If the family are funding or have signed on behalf of FIL there is an issue that they should have access to the record of the service provided to be give proof that they are being provided.

Why is FIL refusing DH/SIL access?

Can he be strongarmed into signing off on access?

Can DH/SIL etc organise a meeting in the house with the manager and their inhouse medic and get FIL to authorise access at the meeting by adding in a term into the contract?

Before the meeting on the contract I would set it out as if FIL was never visited by family and they were giving support so the tasks for each visit are as detailed and specific as possible.

Eg morning call is non medical and medical contract details what is to be done and then was done daily
• wash shower /shave /etc
• bathroom assist if needed
• dress
• food [ exact details if he is not eating ]
• drink [ a measure jug to track intake servings]
• Left safe in chair/on sofa / at breakfast table
• has tracking device on
• walking aids available
• change bedding
• washing other clothing
• other household tasks
• night issues : insomnia / extra toileting etc
• memory : v good > v bad
• mood : v good > v bad
• marks on body from fall etc
• reports of falls
• other medical issues
• time over runs : this would indicate if 2 carers will be needed as he slows down.
• tasks not done: he refuses to do X or on a bad day the care pace during the call has to be slowed down so next call needs to do X

● Offer meds: what happens here most care companies will not take responsibility to if they were taken or no.
So if family have no evidence that meds are taken when do the care company call his Doctor if he is refusing?

^ this is important as care staff should not be carrying medical decisions with no or limited medical background.

My position would be if Co want to be "in charge" with FIL and block family they take on the full legal weight of that. They cant force FIL or Bully FIL so their point of raising alarm has to be much lower than DH/SILs

So in the meeting I would let the Co lead with a list of what will be done on each call and what adaptations are made to a call for person with advanced cognitive decline and classic signs of early dementia.
Let them explain if they will not all access to even the non medical items what triggers alarms eg if FIL is not eating or drinking or refusing meds.
What happens if the assigned carer cant do a call.
If the call is a fixed time and fixed small team how is a new team member introduced.

Just work down through what they provide.
And if/ where they will meet in the middle so its an attitude test

Tbh it may be a issue where the Co wont deal with DH/SIL and it can only be solved by looking for a new service provider

rickyrickygrimes · 17/08/2025 06:49

FIL says No to everything by default, then expects SIL to run around doing all the things he had refused help with but can’t do himself. This includes carers coming, a cleaner, newspaper being delivered rather than SIL bringing it etc. DH is often better at getting him to agree to these things, he’s more direct about the impact on SIL and FIL seems to take this on board. SIL isn’t good at saying no or standing up for herself, but she was the only one present when the care manager visited and FIL didn’t give consent. I don’t think he will even have understood what he was saying no to 🙄.

it has come up because there have been a couple of issues recently that we think the care company should have picked up on but we’ve heard nothing from them. FIL gets stressed when he has visitors at the same time as the carers are in so we’ve tried to not visit at the same time - this might be a mistake.

Examples are:
FIL has developed a really bad chesty cough. SIL has just had an operation so can’t visit for a while, but DH and I are here just now (we don’t live in the UK). We picked up on it, and he’s prone to these things due to being an ex smoker- but we’ve heard nothing from the care company 🤷‍♀️ we ended up going to Boots for advice and will organise a Dr rdv if it doesn’t improve. If we weren’t here, and SIL isn’t able to visit, the carers would be the only people to be aware and we have no idea if they are or not 🤷‍♀️
A few days ago FIL asked DH to cut his toenails, and DH was horrified at the state of them. He wouldn’t show me a picture as it’s too grim, but he’s really angry that the carers - who presumably see his feet twice a day during clothes / pj changes and showering - have said and done nothing. We don’t know of FIL didn’t ask them or if they offered to cut them but were refused ?
FIL said to me today that he ‘gets in trouble’ with the carer because he can’t make up his mind what he wants to eat, and he was a bit upset about this. I guess we wanted to know what’s happening from the carer / notes pov before speaking to the care company.

Maybe access to FILs notes isn’t the issue, and we should be in direct contact with the care manager or making sure we visit at the same time? It’s the first time we’ve had anyone else caring for FIL (MIL went straight to a nursing home from hospital so skipped this stage). We will be contacting them about the toenail issue, that’s for sure.

The carers are a private company but funded by the LA (personal care free in Scotland). After coming out of hospital he had:
Emergency hospital-provided carers to get him discharged and the bed freed up.
‘Discharge to assess’ team for three weeks.
Private company took over once his care plan was established.

OP posts:
rwalker · 17/08/2025 06:58

rickyrickygrimes · 16/08/2025 21:51

and yes it’s POA for everything, they are doing everything for him now - except for the hands-on support that the carers are now giving.

Is the POA activated

HoldingTheDoor · 17/08/2025 07:11

Carers/support workers cannot cut toenails btw. It is a big no because of the risk that someone has diabetes. Even if they have not yet been diagnosed it’s possible that they may be diabetic but it hasn’t been discovered yet.

If they are that bad it should have been recorded and mentioned to a manager but having worked in care temporarily in the past, it’s amazing how many messages you pass along to your manager that they forget to tell family. Or they pass it along to one family member and that family member doesn’t do anything about it or tell the others.

You should arrange for a podiatrist to see him. Many will do home visits. Not cheap but worth it.

rickyrickygrimes · 17/08/2025 07:15

HoldingTheDoor · 17/08/2025 07:11

Carers/support workers cannot cut toenails btw. It is a big no because of the risk that someone has diabetes. Even if they have not yet been diagnosed it’s possible that they may be diabetic but it hasn’t been discovered yet.

If they are that bad it should have been recorded and mentioned to a manager but having worked in care temporarily in the past, it’s amazing how many messages you pass along to your manager that they forget to tell family. Or they pass it along to one family member and that family member doesn’t do anything about it or tell the others.

You should arrange for a podiatrist to see him. Many will do home visits. Not cheap but worth it.

Yeah we reckoned that would be the case. We used to have a chiropodist visit for MIL so will reinstate that. A heads up would have been good though.

OP posts:
rickyrickygrimes · 17/08/2025 09:38

rwalker · 17/08/2025 06:58

Is the POA activated

I’m not one of the attorneys, but I don’t think there is a formal process for this in Scotland. (It’s definitely registered).

When MIL died, the lawyer and everyone else accepted to work with DH / SIL as POA instead of FIL as he was totally bamboozled by it all. His banking doesn’t really need any intervention - it’s all set up as direct debits for bills and FIL no longer spends any money directly as he doesn’t go out and doesn’t do online banking / shopping. SIL does his shopping, there is a dd set up to give her enough money each month for this. It hasn’t been formalised as in DH and SIL having their own access to his account. Up to this point SIL sits beside FIL and they check together his paper statement, when he asks, or make any changes online.

For all the health / welfare decisions so far, FIL has given verbal / written consent at various points. SIL is physically present at his appointments. He has signed to allow his GP to share his records. When he was in hospital and with social services SIL was the default contact point and either she or DH were present at all meetings because FIL did not understand and he cannot accurately report back what had been discussed or agreed. Does that count as ‘activated’? It seems that capacity is a slippery concept / grey area, but FIL is largely unable to understand / remember medical / care discussions, and he cannot make decisions on the spot - his natural reaction is to say No, or I’ll think about it (= I’ll completely forget about it for now and have to have it explained many times in great detail). So that’s tricky when the outcome is worse for him or increases SIL workload - he can’t project forward to the consequences of his decisions.

OP posts:
rwalker · 17/08/2025 10:56

rickyrickygrimes · 17/08/2025 09:38

I’m not one of the attorneys, but I don’t think there is a formal process for this in Scotland. (It’s definitely registered).

When MIL died, the lawyer and everyone else accepted to work with DH / SIL as POA instead of FIL as he was totally bamboozled by it all. His banking doesn’t really need any intervention - it’s all set up as direct debits for bills and FIL no longer spends any money directly as he doesn’t go out and doesn’t do online banking / shopping. SIL does his shopping, there is a dd set up to give her enough money each month for this. It hasn’t been formalised as in DH and SIL having their own access to his account. Up to this point SIL sits beside FIL and they check together his paper statement, when he asks, or make any changes online.

For all the health / welfare decisions so far, FIL has given verbal / written consent at various points. SIL is physically present at his appointments. He has signed to allow his GP to share his records. When he was in hospital and with social services SIL was the default contact point and either she or DH were present at all meetings because FIL did not understand and he cannot accurately report back what had been discussed or agreed. Does that count as ‘activated’? It seems that capacity is a slippery concept / grey area, but FIL is largely unable to understand / remember medical / care discussions, and he cannot make decisions on the spot - his natural reaction is to say No, or I’ll think about it (= I’ll completely forget about it for now and have to have it explained many times in great detail). So that’s tricky when the outcome is worse for him or increases SIL workload - he can’t project forward to the consequences of his decisions.

With my dad we registered it long before he needed it but it was completely powerless till when the time come and he didn’t have capacity then we had to get it activated then we could use it

tbh from what you say he’s got capacity do the POA hasn’t kicked in

rickyrickygrimes · 17/08/2025 11:33

rwalker · 17/08/2025 10:56

With my dad we registered it long before he needed it but it was completely powerless till when the time come and he didn’t have capacity then we had to get it activated then we could use it

tbh from what you say he’s got capacity do the POA hasn’t kicked in

What do you mean by ‘get it activated’ and how does this apply in Scotland? What do you actually have to do?

OP posts:
rickyrickygrimes · 17/08/2025 11:35

What I mean is wherever DH or SIL have acted on FIL behalf, none of the lawyers / doctors / social workers etc have asked to see the ‘POA activation proof certificate’ or whatever. What does ‘activation’ look like?

OP posts:
rickyrickygrimes · 17/08/2025 11:39

For all the health / welfare decisions so far, FIL has given verbal / written consent at various points.

BTW when I say this I mean that FIL has given consent for DH / SIL to act on his behalf, not that he has specifically given consent to whatever was being proposed by the lawyer etc.

OP posts:
AnSolas · 17/08/2025 11:40

Ok so the easiest solution is type up a letter to the care company

Dear Sirs

Re Care client contract number XXX for FIL dated dd/mm/yyy
Details of person being cared for :
Name: FiL
DoB :
Address :

As of today DD/MM/YYYY, I FIL hereby grant my children
• SIL of address with phone number and email address
> add good quality picture
• DH of address with phone number and email address
> Add good quality pic
access to all my personal data (as defined in the Data Protection Acts) and all and any records held by and on behalf myself by Care Co.

I confirm I agree to my children accessing my daily care records and authorise Care Co to provide a copy of these records on request and a method to access these on a daily basis if requested.

I authorise my children to communicate (in person, in writing, by phone and any other method) with Care Co staff on my behalf.

^ and add paragraph for any other issues

This consent is valid from Dd/Mm/YYYY and can only be revoked in writing

Yours....

I would do 4 wet ink
1 goes to Care Co
1 each to DH and SIL
1 goes into the care folder in FILs. It with pics give a carer permission to speak to SIL/DH outside the hearing of FIL so ask questions and give care instructions (once in line with care plan).

On capacity has the family got a record of this:
"FIL is largely unable to understand / remember medical / care discussions, and he cannot make decisions on the spot - his natural reaction is to say No, or I’ll think about it"

Would the GP be willing to do what is effectively an referred letter to the memory clinic as an adition to the care plan.

Or another way what medical information was included in the care assessment and how was the plan adapted to meet FILs needs?

The LA is involved in the payment who signed the contract on the family side?
Normally the care co will have a section which says if LA fail to pay for any reason FIL person who signs contract pays.

Care plan assessment needs a do over to fill in the gaps.

"FIL asked DH to cut his toenails, and DH was horrified at the state of them."
This is a situation where Care Co will not do X due to risk and/or no training is provide (by choice). The LA staff may be better able to highlight where the Care Co job stops and their begin. As in if Care Co sees FIL required a service would they be expected to contact LA with a care issue if FIL had no family?

"FIL said to me today that he ‘gets in trouble’ with the carer because he can’t make up his mind what he wants to eat, and he was a bit upset about this."
This can happen as the carer has a fixed amount of time to carry out tasks so the carer is saying he must eat something so carer must be told some choice or is just a new abusive carer or anything in between.

The fix is limit the choice to one or two options
With a full list of what the carer should be expecting
Normal choice
° Is always include
° Tea : use 2 tea bag seep for 2 min serve with lemon/milk, no suger
° Toast: brown high fiber bread, butter and light application of jam
° Add one of
° 1 sausage 1 rasher egg ( boiled or poached)
° 1 bowl of cereal with hot milk
°1 sandwich two slices of bread, mayo, mustard, with 1 slice of ham
Or alternative as requested

Same with clothing split outfits into time of year/ weather appropiate sets with layers.

"Up to this point SIL sits beside FIL and they check together his paper statement, when he asks, or make any changes online."
Family can be given access to his bank account by permission (and paperwork) without a POA as SIL is directing FIL and has access to his pin it would be advisable to action that change asap as per T&C frauds etc are only refundable if FIL is only person with access

rickyrickygrimes · 17/08/2025 12:00

@AnSolas thank you for such an informative post. The care arrangement has been in place for 8 months now, and it appears a review / bit of fine tuning would be timely - you’ve given us lots of starting points.

OP posts:
AnSolas · 17/08/2025 12:32

Agreed and if there are issues its best to sort them early.
I would sit and map what happens during each visit even if this is having one of you just sitting and watching and listening to what is going on.
And break it down into musts eg take meds/eat/drink and nice to have daily / per visit eg clean clothes.

You want a detailed list of tasks but not so detailed in all areas that a carer can go it was not on the list so I ignored common sense and did not do it plus the give the carer leeway in whats possible to on a bad day

BeaTwix · 17/08/2025 23:05

You need to read the POA document. It's pretty common in Scotland for finance to kick in when it is signed with no formal "activation". I would suggest getting access to the accounts sorted for the attorneys because doing so isn't actually that straightforward and it's better to have it sorted than need access to money in a hurry and not be able to get at it.

It's also more transparent if all spending for him is done using a debit card from his account. Some of this is about protecting your back in case anyone stirs up trouble about how the elderly persons money has been spent.

Welfare POA only kicks in when capacity is lost. How this is decided will depend on the drafting of the POA - a formal capacity assessment may be required, or it may be when the attorneys believe it to have been lost. Beware that in my experience (also Scotland/ also in memory clinic waiting zone) all the professionals want the elderly person to have capacity as it is easier for them and will ignore signs during a capacity assessment that the elderly person isn't retaining/ weighing information.

I'm a doctor, we have a legally qualified family member and one of the neighbours is an older persons social worker. All of us make capacity assessments in our professional lives. None of us think the elderly person I care for (EPICF) has capacity for "big" decision like where to live. But the discharge team at the hospital did.

Although to be fair to them EPICF confabulates amazingly. They almost had me convinced they had done two big tasks I did for them recently by providing a very convincing explanation of all the steps involved. Lots of "I must", "well you would think", "obviously John lewis is the place to go" doing heavy lifting. Having listened to that I can well see why someone who doesn't know the background/ facts would believe them....

rickyrickygrimes · 18/08/2025 07:48

Beware that in my experience (also Scotland/ also in memory clinic waiting zone) all the professionals want the elderly person to have capacity as it is easier for them and will ignore signs during a capacity assessment that the elderly person isn't retaining/ weighing information.

This has certainly happened and I have assumed it’s because the health / social care staff want to push forward with the quickest / easiest (for them) option, then deal with any negative consequences that arise later - and it probably won’t be them dealing with it by that point 🙄.

FIL understands very little first time round, but he nods along just to get it over and done with. If DH is there, he’ll ask questions to ascertain whether FIL is understanding what he’s agreeing to or being informed of, and usually he isn’t. Unfortunately DH cannot be at every appointment.

Getting direct, separate access to his banking is being organised now, for both attorneys.

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