Data Protection/Duty of Care vs Best Interest

[MarklahMarklah]

Hoping some wise heads can help here.

I have an elderly relative for whom, two years ago, I obtained joint POA (lasting). The POA relates to Property & Finance.
Briefly, relative's spouse handled all finances and had become ill. They decided to utilise POA so myself & one other could make decisions (with discussion) on their behalf.

Last year relative's spouse died. Since then, myself & other have managed finances relating to property maintenance, investments, etc.

Early this year, relative was diagnosed with dementia. Specialised needs have seen them move to a care home. Although their condition is less worrisome than it was, they clearly do not have capacity to make 'big' decisions.
In the last six months, there has been a deterioration of health, with a life-limiting condition possibly on the cards (waiting results of tests).

Relative does not understand why they need to have frequent blood tests/ECG monitoring/scans. They will go to appointments, but have little understanding of what is being done, other than it being a disruptive and upsetting experience.

I understand that correspondence around hospital/doctor appointments must be sent to the patient. However, in this case, the patient cannot be expected to be able to determine the urgency or necessity of any tests/scans, etc.

Having spoken to a solicitor I am advised that if the person has dementia, we cannot apply for a POA regarding Health & Welfare.

I've spoken to the Office of the Public Guardian who suggest we apply to the Court of Protection, but looking at the costs involved, it is not possible.
I do not work, and I do not receive benefits. I cannot find the nearly £1000 it will cost to lodge an appeal. The 'other' with whom I have POA has a young family and a mortgage, and also does not have the money to apply.

If we cannot afford to do this, what can we do?

We just want the relative to be able to attend appointments, and to be able to determine whether any treatment that may be required to follow up may be considered to be in their best interest. Obviously if we can attend appointments we will, but in the current situation, we are unaware of them until afterward.

[cdtaylornats]

www.dementiauk.org/wp-content/uploads/2015/11/sources-of-support.pdf
www.gov.uk/government/publications/power-of-attorney-fees

It should cost £110 to set up an LPA and you might get a reduction or free.

I think you should talk to Dementia UK

[Wolpertinger]

It is too late to do an LPA for Health and Welfare if your relative no longer has the capacity to understand what one is or appoint you.

However 99% of the population are in this situation and don't have a LPA. You do it all on Best Interests. So go to GP with relative, get on their system as relatives carer. Also speak to GP about if more support for relative's worsening dementia available and are all these hospital appointments really necessary given dementia is getting worse.

When an appointment at hospital is missed, ring them up, rearrange, go to the next and fill in all the details relative misses out, say if they can't reliably take meds or whatever and ask to be copied in to all correspondence.

Each decision needs an individual best interests decision but largely that is going to be let's help this person be helped by their supportive relative.

[Wolpertinger]

As above doing an LPA with a solicitor is a waste of money if you can understand the forms yourself and get the appropriate witnesses. Do it online for £110.

The problem lies with if your relative understands what they are doing and if you can get another suitable person to sign to agree. If the dementia is severe it is too late.

However even without an LPA people in Healthcare will want to help if you get in touch to tell them the problems- you actually still have to do this with the LPA so it doesn't cut out that work.

[MarklahMarklah]

I will speak with relatives GP.
I don't live in the area and it can be difficult to attend appointments with relative owing to my own family commitments.
Thankfully care home are able to arrange company & travel to/from appointments. Technically, they are carers.

Dementia is progressive but with ups and downs. One day, coherent and 'normal', another day severely paranoid, distant, confused. In light of this, solicitor says they do not have capacity to appoint anyone LPA for health.

[Wolpertinger]

If they are in a care home speak to care home manager and see how they can coordinate appointments- they will be doing this for other residents.

What is relative like on a good day - would they consistently say you can have LPA? You don't need a solicitor to do one but will need a person who knows them to say they understand what they are signing. For my FIL we got a neighbour to do it. You can't use care home staff. However it may be too late but still worth reading the documents and seeing if you can try.

[Dizzydodo]

If your relative doesn't have capacity to consent to tests/treatments etc the medical team will be making decisions about what they do/do not do in their best interests. Are you concerned the medical team are not acting in their best interests? Does your relative have an independent advocate (ie through an advocacy service)? What do you feel would be gained by having POA for health and welfare?

[MarklahMarklah]

Dizzy - at present I'm not permitted to receive correspondence from hospital/GP which outline relative's health condition and proposed treatment. I was told by the GP that LPA would allow me to receive copies of these & other related documents.
Understanding the full prognosis would be helpful in terms of pre-determining what care is needed on continuing basis - so being proactive rather than reactive.

Wolt there is nobody else who is not next of kin or care home staff that could confirm that relative (on a good day) would understand what they were signing.

I think it's going to be back to the drawing board with GP and speak to care home manager. I suspect that we will be looking at worst-case scenario regarding health and that pallative/end of life care is relatively imminent. Just want to feel that I'm actually doing all I can to ensure that their last few months/years are as comfortable and stress-free as possible.

[Wolpertinger]

Hmm I think GP has an incorrect understanding of the role of the LPA here.

Under the Mental Capacity Act all decisions have to be made in the patient 's best interest if they lack capacity to make their own or an LPA to do it for them (who incidentally also has to act in their best interests too, not just make it up as they go along).

So you have a number of decisions here - should relative be going to appointments at all, if so how can this be facilitated. I would guess there are others- try framing them as decisions.

For each one the decision maker (who varies depending on the decision) so possibly GP or consultant for should he go to the appointments, care home manager for making him turn up, needs to make a decision based on what he can express, what can be gleaned from relatives about his wishes when he was better able to say, and medical or other relevant professional opinion on his health and the appropriateness of the intervention.

So for 'should he go to appointments' you may get yes, no or just these really important ones.

For how do we get him there there could be a range of solutions eg his post is opened, care home manager is copied in etc.

It's also important that the people looking after him know what the outcome of each appointment was if he can't be relied on to remember - how are GP and care home manager going to solve this?

Finally I suspect if you asked his consultants to be copied in, they'd probably just say yes and take your address- I have a number of patients i do this for as it's an obvious solution.

[MarklahMarklah]

Thankyou Wolt that's very helpful.
I am due to visit relative shortly so will speak with care home manager/dementia care manager as well to see how we can smooth things out.

Majority of the appointments right now have been for tests to ascertain whether suspected life-limiting condition is present, and for cardio-vascular function (already on medication for this).