Mum refusing to attend clinic appointment for results

[Collywobbles]

Mum had a CT scan schedued by the memory clinic a few weeks ago. We got her there by persuading her it was to follow up on the effects on her brain, when a recent heart problem interrupted the blood flow to it.

The clinic have written directly to her, on stationery with "dementia" and "alzheimers" on it, giving her an appointment to get the results at a memory clinic. We've just found out about it by accident - she has the letter in her pocket, she won't let it out of her sight and won't let anyone else read it. We only know because she forgot she had it in her pocket and got half way through reading it out to Dad before she realised what it was and clammed up. Apparently the appointment is later in March and she named the venue, but she's refusing to say what time it is and refuses to go. If she follows her usual pattern, the letter will now disappear.

Ideally, we'd like Dad, her next of kin, to be able to phone for the results or attend the appointment instead. However, Mum won't let him out of her sight. Pretty sure the results won't be a surprise, but Mum is just desperate not to hear it. Could I or my siblings ask for Mum's confidentiality to be waived so we could help, or does it have to be Dad? We're not sure he'd want to provoke Mum - he's dealing with cancer and the side-effects of radiotherapy, so he needs the quietist life he can manage just now.

And is there any way at all we can persuade the medical community to stop shooting us all in the foot by corresponding with one of us instead, or by using plain stationery not plastered in words that trigger Mum?

Many thanks for the advice. After my last question here, I suspect many other folks would've run into this situation before.

 

[Jessbow]

They are bound by the constraints of confidentiality.

Doesnt sound as though she'd consent anyway.

I'd be asking myself what the point of stressing her out over it was really- if its clear she has some form of dementia, she has some form of dementia.

The GP will get the results I assume so not completely wasted

 

[Collywobbles]

They are bound by the constraints of confidentiality.

Doesnt sound as though she'd consent anyway.

I'd be asking myself what the point of stressing her out over it was really- if its clear she has some form of dementia, she has some form of dementia.

The GP will get the results I assume so not completely wasted

As I understand it, if someone is incapable of caring for themselves or they put themselves in harm's way, then confidentiality can be waived. As she ended up nearly dying last year because she didn't take her heart & kidney meds over several months and managed to hide that from Dad (albeit probably not deliberately), I think we have a decent case.

My thought is that there must have been some point to the CT scan, otherwise it wouldn’t have been offered. Granted Mum's unlikely to be attending any social groups as a result, but we don't know if there are meds which might slow things down or whether she's now too far gone.

I'll contact her GP and ask if they could get the results and deliver them gently during a 'routine checkup'. Thanks for the pointer - you may have hit on a way forward.

 

[Sarasa]

Hi @Collywobbles, I had very similar problems with my mother. As she had very poor eyesight she would leave her post for me to read, so I knew about her appointment to the memory clinic. Like your mother she'd agreed to the scan, but flatly refused to engage with the memory clinic. You could try phoning the clinic if you know the date and say the letter has been lost and you can't remember the time? Do any of you have Lasting Power of Attorney for Health and Welfare? I did and I managed to get them to contact me as well about mum about things.
As @Jessbow said the GP will have the results so you could make an appointment for your mum with him to discuss them. Mum has vascular dementia so there were no drugs they would prescribe. The memory clinic did prescribe risperidone when mums behaviour got difficult, even though they hadn't seen her, but the GP and I decided that wasn't a good idea. By that time, mum who lived alone, was very unreliable about taking medication properly and without someone to keep an eye on her I was worried about possible side-effects.
We didn't have an official diagnosis for a long time. We got one in the end when mum had a melt-down in the surgery and the GP arranged for a psychiatrist to visit her at home unannounced.
To help in the future could your dad get to the post first so he can 'disappear' any other letters that come for your mum that might cause her distress?

 

[Shedrech]

hi @Collywobbles
I agree with contacting your mum's GP

though, personally, I would also, with your dad ( he need only sign a letter you produce), write to the clinic and tell them what your concerns are, including that having the envelope etc 'give the game away' just isn't helpful ... who knows, they may be understanding

 

[Jaded'n'faded]

Could someone do a bit of sneaking around? Surely there will be some time when your mum is asleep when your dad (or someone else) could get access to the letter, read the contents then quickly replace it in her pocket?

But somehow you need to get her to agree to you or your dad 'helping her' with all things medical. Because you'd just be making sure these ridiculous people stop bothering her, wouldn't you? Those doctors don't know what they're talking about so you'd be happy to sort them out for her...

 

[Starting on a journey]

I had the same thing and rang the memory clinic and told them mum would not be coming for her results. I was invited to come instead of her! Good job really as it was a bit brutal....your mum has Alzheimer’s. However she did subsequently get put on memantine which has helped enormously. Try asking the clinic , explaining how she won’t let dad out of her sight. It won’t be new to them!!

 

[Frank24]

I had the same thing and rang the memory clinic and told them mum would not be coming for her results. I was invited to come instead of her! Good job really as it was a bit brutal....your mum has Alzheimer’s. However she did subsequently get put on memantine which has helped enormously. Try asking the clinic , explaining how she won’t let dad out of her sight. It won’t be new to them!!

It is brutal isn’t it.

 

[DreamsAreReal]

I hope your Mum’s GP will co-operate with you. Some are more helpful than others. My pwd was furious at getting letters headed with Dementia and Alzheimer‘s. One time she tore them up and shouted “they keep calling me dementia! So insulting!”. I think letting your Mum’s GP know how she’s reacting to the letter is a good idea. Best of luck. Sorry you’re poor Dad is so sick. xx

 

[Countryboy]

Please respect the individual’s decision
Choice to decide what we all want, as most would say. There is a growing cognisance that patients can and should play an important role in deciding their own care,

Medical practitioners should assess a patient’s capacity to make a particular decision at the time it needs to be made. They must not assume that because a patient lacks capacity to make a decision on a particular occasion, they lack capacity to make any decisions at all, or will not be able to make similar decisions in the future.

The Mental Capacity Act 2005 says you have these rights:

You will be assumed to have capacity, unless you have had an assessment showing you don't.
All decisions made for you when you have lost capacity should be made in your best interests.

Your liberty can only be taken away from you in very specific situations - this is called a deprivation of liberty, and it should only be used if it is the least restrictive way of keeping you safe or making sure you have the right medical treatment.

You may have the right to get support from an advocate in certain circumstances. This is someone who listens to what you want and can speak for you, if you want, but does not have the legal authority to make financial or personal decisions for you.

A deputy is a person appointed by the court to make financial or personal decisions for you, once you have lost capacity to make those decisions for yourself.

If there are any doubts as to what an advance decision means, or what an attorney under a lasting power of attorney or a deputy is allowed to do, the Court of Protection can make a decision about these things.

You can appoint an attorney. This is a person you appoint, while you have capacity, to make financial or personal decisions for you for a time when you have lost capacity.

You can make an advance decision. These cover refusals of treatment only and are legally binding. You could also make an advance statement. Advance statements cover a wider range of issues and are not legally binding, but your wishes and feelings should be consulted once you have lost capacity.

 

[Collywobbles]

I've spoken to Mum's GP today. After recent developments he is satisfied that Mum can no longer make decisions in her own best interests, so he has agreed to speak to the family about her treatment and waive her confidentiality. He has offered to run through the scan results with her as part of a routine appointment, if she decides that she doesn't want to attend the clinic and speak to the specialist.

Whilst we obviously want to respect Mum's wishes as far as possible, her main wish is to ignore the fact that she has dementia. That's not possible for us as we also need to safeguard our sick Dad who cares for her. But we do now have a way forward - with the current situation at least.

Thank you to everyone for such useful and thought-provoking advice.