Alzheimer's Society Innovation Hub

How is dad really?

Hello, I'm a new member. 

My father lives in a wonderful Care Home, with marvellous Care Assistants who we regard as extended family. 

It's not all rosy but everyone will be familiar with the challenges having a loved one in care brings. 

 

Dad's home is part of a large National organisation so making recommendations or suggesting new ideas is extremely difficult. There appears to be a policy to follow for just about everything. 

In the 3 months leading up to the outbreak mum and I spent every day with dad (he'd been placed on End of Life Care and we didn't expect to have him with us come Christmas but we motivated him to fight to live and he did), so to go from that level of contact to none was difficult for us and we assumed would be the same for dad. 

 

Here in lies my concern: I have no genuine knowledge of how my dad is. What is his understanding of the situation? If he missing us? Does he voice these concerns? Does he have any personal needs? (I've not received a single request for anything - however I have been sending in parcels regularly). 

 

Either mum or I call the Home every night and the response is consistent, 'He's fine, he's eating well'. We prompt for more information but it's hard and we know staff are busy. 

 

This needs addressing and I do have suggestions but it's being heard that's the issue. 

edited on May 5, 2020 by Natasha Morgan
Tracey Annette

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Natasha Morgan 5 months ago

Hi Tracey, welcome to the hub, and thank you for sharing your concerns about your dad. It must be a very difficult time for you and your family.

What are the suggestions you have to improve things? There are new opportunities for innovation presenting themselves all the time, so we are always keen to hear about ideas.

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Tracey Annette 5 months ago

Hi Natasha,
The Home in question has WiFi. It was purpose built as a Care Home, by a company who had interests in IT and therefore, was digitally ahead of its time.

The Home was recently (5 years ago) taken over by a large National not for profit organisation who certainly don't appear to embrace the digital opportunities these modern times present.

I think there are 2 main factors:

1. A fairly understandable lack of basic IT knowledge amongst the workforce.

Given there is WiFi throughout the building and many residents own their own Smart TVs, only a handful of staff identify as having knowledge to, 'find the red button', operate NETFLIX or iplayer.

And any fairly simple questions I've asked at the managers office relating to the WiFi not working, have been met by bewildered looks. Previous managers have struggled with accessing company email address inboxes such as admin@, manager@ - claiming they were set by someone who no longer works there and therefore no longer in use. (Imagine that at ICI).

It's now 7 weeks since I last had a real conversation with dad, he's not great on the telephone. What I find harder is that it the same time since I actually saw him - we monitor so much through just seeing him.

He lives on the top floor and due to pressures on staffing cannot, apparently, be brought downstairs for a window visit.

To remedy this situation, the Home advised family that an ipad was being provided, presumably from 'head office' and we'd be able to Skype our loved ones. Instructions were provided by the Homes receptionist (verbally over the telephone in long drawn out detail - how to book in, how you'd only be allocated so much time, the fact the ipad would be used on certain floors on certain days, the days you could book into the diary etc etc), I asked would it not be more time effective to email families who regularly communicated with the Home via email, 'but not everyone has email'. There are frequent reminders of the skills deficiency). The are over 50 residents in dad's Care Home, granted not all have family but my call lasted around 20 minutes.

So Skype was on its way. We waited and waited. Apparently the new ipad wouldn't connect to the WiFi. A member of the management team provided their personal ipad (one which they took home at night and weekend) and I was invited to Skype in. I sent a video recording, two in fact, one to thank the staff and one for dad. Six days later they hadn't been able to access them.

Then I was informed they were experiencing issues with the ipad but were purchasing a Portal, again I was thanked for my patience whilst they attempted to set this up, 'I think we need help from our IT people'.

Bloody hell - the organisation has IT people? I couldn't believe it.

There's still no official way to communicate with dad. I can't see progress being made anytime soon.

There are two wonderful Care Assistants, who are not always on duty, who are willing to break loose company rules about using their own devices 'on the floor' and who are willing to show dad video messages that I make. But for them, he wouldn't have heard my voice.

2) Lack of innovation within the Care Provider organisation

At night, just after the evening meal has been cleared, all four staff members sit with residents files, hand writing personal notes on a number of different pages in each file. These are completed by individuals who might not have personally provided care so you'll often hear questions like 'did Dolly eat well today?' called out. This filling in of files can last 2 hours and by 8pm there's also a need to have everyone ready for bed.

Just imagine voice recognition being used where staff could verbally update records throughout the day and it being automatically uploaded to electronically kept records. Records that family members had access too?

We're light years away from this but shouldn't be!

Handwriting and spelling is poor from what I have seen within the Home and a few on dad's floor have explained in passing they have dyslexia (though non report having been tested). Yet these staff note take during doctors visits and update records relating to medicines given.

The two obvious benefits would be, investment from the Provider organisation and maybe some contractual requirements stipulated at the point of commissioning, that Providers meet certain levels of IT competence. (Communication with family via email, a monthly electronic newsletter, a monthly personal update about loved ones. A reliable means of electronic communication between family and residents - not just in times of crisis. )
Secondly, that there is some form of insentive for staff to learn and develop new skills such as the use of IT in a Care setting.

This crisis presents a great time for a review of so many aspects of Care Provision, I hope we can take them.

Tracey

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Margaret Booth 5 months ago

It could be incompetence but some care homes are resistant to the use of WiFi as it facilitates relatives installing cameras in residents rooms. There is also the question of data security. But yes a review of digital access to care homes is certainly one of the things that will have to be rethought.

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Tracey Annette 5 months ago

Margaret and Natasha
I live in Salford, my father lives in a Manchester Care Home.

I also work for Manchester City Council but am on secondment to GMCA. I work in the Greater Manchester Ageing Hub which has a keen interest in how services can be reformed and shaped to meet the specific needs of older people and our growing ageing population (though it will be interesting to see how the recent deaths of older people during the pandemic will have affected population statistics).

Im encouraged by the calls for reform of the care sector and direct calls from Andy Burnham for those living with dementia to be afforded the very best of care services such as that which is offered to those living with cancer.

Natasha you commented about exploiting this pandemic and making good come out of it. That is exactly what needs to happen x

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Margaret Booth 5 months ago

Do they not to FaceTime or some kind of video conferencing. Here in Manchester when the lockdown started 30/80 care homes had noWi Fi access now the Local Authority has ensured that all have a WiFi. Have you tried talking to the Local Authority perhaps they might get a reaction. LA register homes so they have to pay attention. Never let a crisis go to waste.

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Natasha Morgan 5 months ago

"Never let a crisis got to waste". Wise words Margaret! Often we need to turn things on their head in order for real innovation to happen.

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Tracey Annette 5 months ago

Thanks Margaret. See my comments to Natasha.

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Natasha Morgan 5 months ago

Thanks for expanding on that, Tracey. We know there are issues with not everyone being IT literate, or being online at all, but it is surprising that it is such a huge issue at your father's home. Many of the solutions being developed currently so require some use of technology, but we will always keep in mind that we need to find other ways to reach people that won't be able to make use of them.

I have also passed your comments on to our Regional Public Affairs team to feed into their work to influence local authorities.

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Jennifer Bute 4 months ago

Oh so true ... How do we get places that have WiFi and iPads provided by HQ etc to use them?! And also to move into the 21st century? Some excellent suggestions in the comments about using voice activated recording of information during the day. The NHS has taken innumerable years to get to where it is today with all this kind of stuff and central spine of knowledge shared between services. I think it has ot comfort above The Managers need to be 'inspired' They need to inspire their staff their workers and to understand how much better the lives of those living with dementia and other conditions could-be

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