Nursing home electronic records, access.

[Anotherz]

A parent is in a nursing home, and has a form of dementia, which is fairly advanced, being in this case "severe memory problems".

Some time ago, the nursing home changed from using a paper care diary, in a folder in this person's room, to electronic care records.

The family now has no oversight of these records. The family would like to have oversight of these records.

Has the family any possibility of seeing, or right to see these care records? One member has a "property and financial affairs" LPA (derived from an EPA).

Any advice will be much appreciated!

 

[Mumlikesflowers]

I don't know and I want to know myself. My sister, who lives abroad and sometimes gets the wrong end of the stick, was looking at CQC website the other day and seemed to think there was something relevant on there, which would imply yes. It should be a pretty straightforward question to CQC. Because at our home, it's definitely not on offer to look. The EPA for property and finance is definitely not going to apply to care records. But I'm not sure my LPA for health and welfare gives me automatic rights either. Let's ask CQC. Here's their email address enquiries@cqc.org.uk

 

[Anotherz]

That sounds an interestng idea.

In my dealings with the CQC, though, I have fornd them to be "not very useful". This afternoon, for instance, an operative told me that it was not possible to discuss anything about a case I opened with them "because GDPR", even with a reference number and appropriate knowledge, without making a "Accessing your personal information" GDPR request!

Now, searching online for "lpa financial property access care records" gives results including:

Medical disclosure information to attorneys and deputies

Guidance for NHS regarding disclosure to individuals holding either a Lasting Power of Attorney or a deputyship.

www.gov.uk

"The five principles of the Mental Capacity Act 2005 govern how OPG and other authorities (including health and social care agencies) support individuals who lack mental capacity.

This includes assisting attorneys and deputies in the exercise of their duty in supporting the donor, by providing relevant information in a timely manner. The principles can be found at Annex A.

An attorney holding a Lasting Power of Attorney (either Property and Affairs or Health and Welfare) (LPA) or a court-appointed deputy should be able to access relevant medical records of the vulnerable adult.

Attorneys need to be able to make decisions in P’s best interest as their legal representative. They will likely be unable to do so without P’s medical records.

Therefore, the relevant information can be disclosed to enable them to discharge their role as attorney or deputy.


This is not the same as the right of access under data protection law (Subject Access Request) as defined in Article 15, UK General Data Protection Regulation and Section 45 Part 3 Data Protection Act 2018, whereby a person can request all the information that a data controller has regarding them" (Nov, '21).

There are various other results from that online search from solicitors' firms, etc.


Anyway, re the CQC, would you like to ask them, or shall I? I don't mind either way.

 

[backin]

Don't know. The last 2chomes I have knowledge of moving to an electronic system intend to allow access by relatives at some point
Bear in mind it can take quite a while to get the systems up and running, staff trained and data loaded. You'd be the first to complain if data was inaccurate or missing

Have you actually bothered to ask the home?

 

[Sarasa]

I think asking the care home for a regular email update might be the way to go @Anotherz. I never felt the need to check on my mothers records though I did make sure I chatted to the staff about how she was when I visited and occasionally arranged meetings with the manager for a more in-depth overview of how she was. I know mum's care home did used to have a system where relatives could look at the on-line records, then they discovered they could also look at the records of other residents which of course is far from ideal.

 

[Anotherz]

Don't know. The last 2chomes I have knowledge of moving to an electronic system intend to allow access by relatives at some point
Bear in mind it can take quite a while to get the systems up and running, staff trained and data loaded. You'd be the first to complain if data was inaccurate or missing

Have you actually bothered to ask the home?

Fact finding before doing that is the plan. As for "have you actually bothered?", since people care highly for their family, that sounds like a ridiculously unfair thing to say.

Note also that the ICO's office will have something to say if staff are not properly trained and there breaches of duty for that or other reasons.

 

[Hours Away]

Do you know which electronic system the home are using?

As a POA I was given access to 2 different electronic systems as the home switched from one to the other - Log My Care (via an phone app) and the "Relatives Gateway" access to Person Centre Software (via my computer). I could see their care plan, medication, doctors visits, what they'd eaten and what activities they'd participated in.

During the transition between systems I didn't have any access for about a month whilst they sorted out teething problems and worked out how much info they wanted relatives to see.

 

[Anotherz]

I think asking the care home for a regular email update might be the way to go @Anotherz. I never felt the need to check on my mothers records though I did make sure I chatted to the staff about how she was when I visited and occasionally arranged meetings with the manager for a more in-depth overview of how she was. I know mum's care home did used to have a system where relatives could look at the on-line records, then they discovered they could also look at the records of other residents which of course is far from ideal.

Thank you. I am sorry to hear of the "far from ideal" irresponsible breach of law regarding GDPR breaches you mention!

Regarding the records, it has been mentioned, with the previously in-use paper records, that these have been been seen to be filled in at the end of the day, by personnel not present during the day, and therefore cannot be considered correct, with obvious implications for the current system. Of course, "implications" might not actually be fact, and the main idea is that the family gain some oversight of what's happening.

Moe work will have to be done on this. I wonder what Mumlikesflowers would like to do re asking the CQC.

 

[backin]

Fact finding before doing that is the plan. As for "have you actually bothered?", since people care highly for their family, that sounds like a ridiculously unfair thing to say.

Not ridiculous, seems just the easiest and straightforward option.

 

[Anotherz]

Do you know which electronic system the home are using?

As a POA I was given access to 2 different electronic systems as the home switched from one to the other - Log My Care (via an phone app) and the "Relatives Gateway" access to Person Centre Software (via my computer). I could see their care plan, medication, doctors visits, what they'd eaten and what activities they'd participated in.

During the transition between systems I didn't have any access for about a month whilst they sorted out teething problems and worked out how much info they wanted relatives to see.

That is very interesting. Did the business ask for your POA credentials? I will see if someone can ask what electronic system is in use (the switch was maybe a year ago now).

 

[Louise7]

Mum's previous care home used the Relative's Gateway electronic system and access was only given to those who held Health & Welfare LPA. Other care homes may take different approaches in respect of who can have access, and although the notes gave an overview of daily care, at times the standard was quite poor and clearly inaccurate.

It may be helpful to speak to Care Rights UK as they have a lot of knowledge about care home related issues and may well have dealt with this before. You can call or book a half hour slot on line:

Contact our helpline — Care Rights UK

Get free, independent advice about problems with care for older people.

www.carerightsuk.org

 

[Anotherz]

Mum's previous care home used the Relative's Gateway electronic system and access was only given to those who held Health & Welfare LPA. Other care homes may take different approaches in respect of who can have access, and although the notes gave an overview of daily care, at times the standard was quite poor and clearly inaccurate.

It may be helpful to speak to Care Rights UK as they have a lot of knowledge about care home related issues and may well have dealt with this before. You can call or book a half hour slot on line:

Contact our helpline — Care Rights UK

Get free, independent advice about problems with care for older people.

www.carerightsuk.org

Thank you! I had not heard of them, I'll have a word, as well as the other things.

I don't think care homes can take different approaches where the law is concerned, or at least I hope they don't!

 

[Mumlikesflowers]

I'm sorry @Anotherz that I didn't come back on this. I think Care Rights Uk is going to be the route to decent information. I will book in to speak to them and I promise I'll come back with an update. I think the point made about the home being concerned that you don't look at some other resident's records might be behind people at our home being seemingly so reluctant for me to see any data on the handheld devices just when trying to manage the care from day-to--day, rather than me focussing specifically on 'can I see and if not why not'.

 

[Anotherz]

Sorry for the delay. Spoke to the CQC who said that next of kin should be able to get the records. Not sure about that one!

There's a little more information at:

https://caretobedifferent.co.uk/need-help-getting-copies-of-your-relatives-care-home-records/

Can I access someone else's medical records (health records)?

Health and care records are confidential so you can only access someone else's records if you're authorised to do so.

www.nhs.uk

https://lincolnshire.icb.nhs.uk/documents/safeguarding/7-minute-briefings/7-minute-briefing-medical-disclosure-information-to-lasting-power-of-attorney-or-a-deputyship/?layout=default

Why is it important to check your relative’s care home records? - Care to be Different

If you are caring for a spouse, parent or other close relative whilst they are resident in a care or nursing home, then you will generally be familiar with their day-to-day care needs. Unfortunately, we know that often the care records are not updated sufficiently regularly, or else are...

caretobedifferent.co.uk

And more, which strongly suggest that people with an LPA of either sort have access.

The ICO's office is likely the place to go. I'll try it.

 

[Anotherz]

I think the point made about the home being concerned that you don't look at some other resident's records might be behind people at our home being seemingly so reluctant for me to see any data on the handheld devices

Accessing these data on the device is not required. An electronic copy is!

 

[Mumlikesflowers]

Accessing these data on the device is not required. An electronic copy is!

It depends what records you're trying to look at, doesn't it? I've requested a copy of the care plan because of course yes, they can extract that and send it to me. But to me that's not records. Records is looking at any data logged from day to day and looking when I want to. It ain't going to happen, is it?

So I did speak to Care Rights UK. Our discussion was pitched in terms of the home's concerns re GDPR especially where I cannot log into Mum's individual records as it's all on handheld devices versus our concerns for person-centred care. I was directed to CQC regulation 9 of the Fundamental Standards for this -

Regulation 9: Person-centred care - Care Quality Commission

Our guidance explains how care providers can meet this requirement, which is one of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014. Its intention is to make sure that people using a service have care or treatment that is personalised specifically for them.

www.cqc.org.uk

The point was also made that the records belong to the home and the information in the records belongs to my Mum and therefore me as her LPA.

 

[Anotherz]

It depends what records you're trying to look at, doesn't it?

If it's data, stored, to do with your mum, and you have a right to access it, it's not in the hands of the care home to deny you. Complain to the ICO. They're likely breaking the law.

 

[Savannah]

I don't know and I want to know myself. My sister, who lives abroad and sometimes gets the wrong end of the stick, was looking at CQC website the other day and seemed to think there was something relevant on there, which would imply yes. It should be a pretty straightforward question to CQC. Because at our home, it's definitely not on offer to look. The EPA for property and finance is definitely not going to apply to care records. But I'm not sure my LPA for health and welfare gives me automatic rights either. Let's ask CQC. Here's their email address enquiries@cqc.org.uk

Yes with an LPA Health & Welfare you have the right to access records. With that you can also access GP records. Unless you are supplied with all relevant information making decisions with an LPA could be difficult so important to access everything you can

 

[northumbrian_k]

In almost 5 years I have only looked at my wife's care records once. This is not because I have been prevented from seeing the records, just that I haven't seen the need. As my wife's Attorney and Relevant Person's Representative I haven't felt constrained in any way. If I need an update over and above what I get from staff when I visit - or sometimes by telephone - I can ask a member of senior staff. Personally I find this more relevant. productive and conducive to good relationships than trawling through cold data.