My Mum died in a care home in Covid times, and we could do better…

About Mum

Mum was 85, she was living in a residential home, and had been there for just over 2 years. She didn’t have a Covid positive test (though the lady living opposite her just did), and there’s some aspects of her death last week in Covid times I thought worth sharing. Because when we account for Covid, it’s not just the direct deaths that matter and because we can and should be doing better for our older folks.

And yes, the care home was the best place for her. Before she went in there, we’d had a year’s worth of falls on her own, dodgy callers at the door offering to clear her gutters and increasing mobility issues. And in the end the staff at Heather Vale care home in Hasland were exceptional.

So, some thoughts on a few things that impacted on Mum’s life and death, and some suggestions for what we could do better (informed through my role working in a hospital Trust, and knowledge of what NHSE and NHSX could and should be doing better).

The impact of NHS ‘normal’ treatment stopping

Like many older folk Mum saw the doctor for a number of things — but the one relevant here is treatment for arthritis — particularly in one of her knees.

She had a regular hydrocortisone injection in her knee which helped keep her mobile. This stopped for lockdown. Before she went into lockdown, she could move herself, with the aid of a walker, and at times use of a wheelchair. In lockdown she didn’t have the injections, she lost all mobility. This matters as even the smallest bit of independence at that age is important, for dignity, but also mental health.

This is why I’m so keen on supporting the outpatients work at KGH, in automating aspects of waiting list management (booking appointments, removing ‘appointment incidents’ that are no longer needed and implementing ‘patient initiated follow up). We aim to do this with RPA, Human+ and the Blue Prism platform. We’ll also be enhancing our use of Medway PAS to do digital clinical outcomes and streamline our (digital) letters. It’s so important we continue other services as we enter lockdown 2.

Physical visiting in care homes

Hmmmmm. Once lockdown started there were no visits. We’d set up Alexa to ‘drop in’ on Mum and that worked ok for a while (when she was in the room, when we were all available) but ‘dropping in’ had some privacy issues for Mum, and for the staff around her. And like many Mum had vascular dementia (she knew who we were, we still had great chats) and a small 6-inch screen isn’t ideal.

In the summer there were some garden visits, and luckily my bro lives in the same town and could see her often at the window. As Mum got to ‘end of life’ he contacted the public health person for Derbyshire, and she agreed it was appropriate he could visit her. This helped with the care home management, but it also meant myself and my older brother couldn’t visit

On 4th November the government updated their advice to support safe care home visits, before then care homes had to make their own rules, and understandably they were highly restrictive. The most recent guidance is still problematic and many charities who support older folk will explain why. But it’s vital more attention is paid to this, and better ‘supportive solutions’ found. I’ll come back to the importance of physical visiting.

Virtual visiting in care homes (aka design the service, don’t just deliver on the tech)

We were lucky enough to equip my mum with an Alexa device before lockdown, and my brother was both local and savvy enough to do so (as were me and my older brother). We were one of the lucky ones.

NHSX announced support for homes by providing iPads (the offer is now shut). Now that’s great, hardware costs.

But the service needs designing, staff need support, and residents and family need support. So why not build on the Virtual Visiting web-based service initiated by Sonia Patel (before she joined NHSX) and implemented at Kettering. You can see the 60 minute version of what this service is (and how we built it) at or the 10 minute version.

The benefits we found of a Virtual Visiting solution at KGH include

• Enhances emotional support and wellbeing: patients contacting friends, family, and carers (wherever they are in the world) which improves morale
• Empowers patients: giving them access to contact others especially for those without a mobile or video device
• Improved patient experience: as feedback demonstrated, patients are very happy with the offering and ability to connect at the touch of a button
• Enhances patient care: the scheduling system can easily rebook visits and send notifications. Ward staff can also book recurring calls, allowing them to spend more time caring for patients and less time administering virtual visits.

And there are other benefits as alluded to above — safeguarding of staff and residents, privacy and IG issues, cost etc. All are as true in a care home.

It wouldn’t take much of an initiative by the government, NHSX or NHSD to make this a national service (comparative to the money being spent at the moment).

Brilliant staff

I think many people know this, but it’s worth saying again. There have been many brilliant people working through Covid times. Through my day job I have direct experience and visibility of what people working in hospitals have done.

But staff in residential care homes have done an equally if not even more heroic job. I don’t know what they get paid but suspect it’s not much above minimum wage.

Towards the end they looked after my Mum’s most personal needs and sat with her as she died — including in the days leading up to her death coming in to say goodnight as their shift ended. What’s been the most difficult thing you’ve done at work in the last week? I bet for most it doesn’t compare to that.

Losing the will to live

About a week before my Mum died my brother was called in to see Mum (now we’d got over the hurdle that Mum was end of life and he could visit). Care home staff and medical practitioners were there and what was discussed was that Mum had ‘lost the will to live’. And this was based on what Mum had said, and how she’d been responding.

The lack of mobility and the lack of visitors — especially my brother who used to see her every day — simply meant life was not worth living for her. And so, she’d decided to die.

I don’t know the science of it, or if such a thing is real, but it feels like it to me. This means the impact of Covid may have hastened her end, it certainly made it much more difficult for those of us who couldn’t be with her in the end.

Her lack of mobility would have happened anyway, but the lack of injections hastened it, and visits either physical or (quality) virtual would have helped keep the dementia and depression at bay.

We can do better for our older folks in care homes and make the final weeks and months of their lives as rich as their first.

And the aftermath

My Dad died in 2017. I did most of the paperwork afterwards. It was a cathartic task to do and it felt like the last service I could do for him. The funeral and gathering afterwards was of course sad, but it was also uplifting. It allowed many people who knew Dad through his life to let us know what a great bloke he was, and how he’d be missed. And it allowed some other family connections to strengthen

In Covid times we’ve decided a direct cremation is what we’ll do (due to the limited numbers, the abstracted nature of a Covid era ceremony and because many of the normal attendees would be vulnerable anyway) and we’ll have a celebration in the Spring, when hopefully Covid has receded.

I know the lack of a traditional ceremony will have an impact on us, it will be difficult to quantify, but it will.

So why did I write this?

I think for a number of reasons

1. To share my voice with many others about the wider impact of Covid.
2. To add my voice to ask the government to do more. Work on the guidance re physical visiting, and manage the risk through talking with care providers, and most importantly their residents and families.
3. And please don’t just fund iPads or other pieces of kit. There are privacy, dignity and safeguarding issues for staff, residents and family members. We talk about Service Design, do some in care homes which supports those issues.
4. To ask for the equivalent of a Virtual Visiting solution in care homes. NHSX or the gov can talk to Madetech, you can talk to Sonia Patel, you can talk to me. As well as hardware you need software appropriate for the setting (let’s not mention Zoom or Duo or Teams)
5. To reflect the value of the staff in residential care homes (I feel similar about nurses and other health professionals, but staff in residential homes have done a heroic job often at minimum pay at significant risk to themselves and their families)
6. To remind everyone to tell your folks you love them — I rarely did with my Mum. And the last time I spoke with her a couple of weeks ago, immediately afterwards I thought “I wished I’d said how much I loved her and how great a Mum she had been”. I had this sudden feeling that would be the last time I spoke with her and it proved to be true (Mum could only speak very sparingly towards the end).