Transcript: How 'essential visitor' status can support families

First findings of a collaborative research project.

Podcast Episode: How 'essential visitor' status can support families


What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
JP - Jim Pearson

MD The first findings of a study to gauge how lockdown restrictions have affected the families of care home residents, have been published. The research, titled Creative Covid Care, highlights the relationship-based and creative practices used to support communication and connection while visiting restrictions have been in place. This rapid research project, funded by the Chief Scientists Office at Scottish Government, has been led by the University of Edinburgh with partners from University of Strathclyde, The University of the West of Scotland and Iriss.

An Early Findings session was held in October, led by the Centre for Research on Families and Relationships. In this episode we hear from representatives of Care Home Relatives Scotland and Alzheimer Scotland who share how being provided with ’essential visitor’ status can help some families, and what else can be done to provide support.

First we hear from Nancy…

Nancy So can I just start by giving a brief outline of my care home visiting experiences during the pandemic, focusing on essential visitor status. So semi-retired nurse and my mum has been a care home for just about a year. So we were still adjusting to her being in there because neither of us wanted her to go in and it was an emergency situation. And she’s got vascular dementia and relied on frequent visits from me before the pandemic to maintain a reasonable quality of life. And she really enjoyed going for drives to the beach and going to the cafes and coming home to spend some time with us so that was really important. So in my experience, essential visitor a status can work very well and should be available to residents. It’s something I negotiated with the care home manager early on and was fortunate enough to get. So a wee bit of background. Eight weeks after lockdown from March to May on my first garden visit I observed a rapid decline in mum’s physical and mental health. And she had cellulitis, multiple non-covid infections and low mood. And as I say, the care home manager, let me and I’ve been going in since May wearing PPE and doing all the risk assessments. So I know it’s possible to do this and I was able to participate in her care. And the outcome of this was a walking plan was put in place instead of over use of a hoist - after GP done a face-to-face review and mum responded well to antidepressant medication and regular pain relief and one-to-one activities with me re-established our connection and gave her much needed emotional comfort and mental stimulation. And it was it came to reality check to keep her in touch with what was going on. But she was able to tell me how frightened she had been I was able to get the story from her, how it felt, being isolated in her room for weeks on end when it was hot, weather outside and she could only sit and look out the window and staff weren’t going in much. The were only going in for the basics because people where all isolated. So it’s a horrible thing for somebody with dementia to to try and cope with and gave me a lot of insight just being able to have these conversations were her, She looked so relieved whenever I went in even when she was tired or bored. She says it’s so important for me to be there. She really looks forward to me, coming in and and she wouldn’t want to be here if I wasn’t coming in So unfortunately, she’s still sometimes gets unwell with transient ischemic attacks and things, but she’s kind of em I think my visits, I would say I believe my visits are the equivalent of a prescribed treatment plan, they are so important. And we did touch in close proximity to aid communication. And I’ve been able to do that wearing PPE. So mobile phones and iPads didn’t work well for us. And then I started thinking about the harm caused by restricting residents inside the care home in their rooms as well as banning people from coming in to the care home. And it kind of reminded me of the old style institutions that I worked in 35-years ago. Only worse because we’re supposed to be more respectful of human rights now. So I’ve been influenced by the work of John’s campaign setup by Nikki Gerrard and Julia Jones. And their belief is that people with dementia should have the right to be supported by a family carer. And lastly, and most importantly, I met other, relatives on social media by chance, and we formed Care Home Relatives Scotland Facebook group in August. So Kathy, Sheila, Allison, Natasha, and myself all have a shared vision of essential caregiver status. And we’ve had some success in lobbying the Scottish government. And I getting the guidelines slightly changed There’s still a way to go. And we’ve also had lots of meetings with other organisations including the Care inspectorate, Scottish Care So it’s a work in progress.

But how do you get essential visitor status? This was a question on some relative’s minds.

Margaret Mum’s physically not able to go outside. And nobody has offered us or giving us the opportunity to visit inside at feels like it’s been a shrug of the shoulders and Oh, well, oh dear, that’s a shame. You can’t come inside to visit and you just have to deal with that. She can’t even sit in a chair to be near a window, although she was on the ground floor. It’s just so unbearable for her to try and sit out of bed. So do we have an argument to say we should have somebody from the family being able to go in and see her.

Natasha Yeah. I would say yes you have to go ask them for the essential visitor and this is me maybe umbrellaing all the care homes under the the one here and apologise I know they are not all the same. But you would need to go ask them for this essential visitor status - they are more likely not to come to you to offer it up because of the fear care homes, have of letting relatives in and it is the care provider who makes that decision its not public health its the care provider makes the decision. They may need the help of public health to look at how that can be a facilitated. But yea, I would see go and ask for it and insist on it because it is your mom.

There are also organisations working to support families. We hear from Jim Pearson at Alzheimer Scotland.

JP Alzheimer Scotland have been supporting thousands of people. continuously through from the start of the pandemic through our helpline and our dementia advisors and our dementia, post-diagnosis support network - all be it - like many other organisations having to do so in an alternative ways so like other organisations who were providing day care and other services from physical locations, we were forced to close those but we’ve continued to support people and had to very rapidly transform how we did that and do in more innovative and creative ways and, and most of that has been using technology and telephone and some outdoor visits and we have been providing and converted some of what we were providing and day care by negotiating with local commissioners who were commissioning there was no day care services to continue to provide some of those people with the most complex needs with face-to-face support in their own homes. But what we have been able to do is really listen to what people are telling us about the experience of living with dementia or caring for someone with dementia throughout this pandemic. And there is no doubt that we will, not so much, not only do we know more about Covid-19 itself, but I think we know much more now about the harms that are being caused by the very measures that are in place to keep people safe from the virus and protect, protect them. And to protect lives. And I think that we, that, that is increasingly acknowledged. There’s a growing body of evidence now. Not just from ourselves but other organisations who have done surveys - the work that Natasha and her colleagues have done as part of the care home relatives group Life Changes Trust and others and others, and there’s been a number of academic institutions have done research into this as well. And there’s overwhelming evidence about the nature of the harms caused to people with dementia and their families and their carers as a result of the restrictions. And I know this is focusing very much on care homes but I think that the isolation, the breakdown in people’s day to day routines, the complete disruption of normal and informal and both formal supports have had that significant impact on people living in their own homes with dementia as well as in care homes. In terms of care homes I know I’ve spoken to one or two people here before about this and Nancy mentioned that the provision right from the word go when lockdown started, the guidance around care home visits always included that provision for essential visitors. It was always there. And I don’t think it was that well explained but it was there and it basically say that people who were in end-of-life care or those people who were stressed and distressed by the restrictions should be able to receive an essential visitor. And it specifically used as an example, people with learning disabilities, people with autism and people with dementia. And as we’ve just seen from the Natasha’s presentation there, that just didn’t happen in any consistent way. And I think it was something like 75% who didn’t access essential visits Natasha. So that has never, I think, really been fully understood or implemented. And I understand the complex dynamics around that in care homes at that point when the peak of the media everyday, the numbers of cases in care homes and numbers of people dying. People with dementia, have absolutely been disproportionately impacted by this virus. They are represented in every measure including deaths from Covid and including the excess deaths. In terms of care home, families of people in care homes, you know, making a decision or come to a conclusion that the someone needs that level of care has always been a traumatic, an emotional, and a difficult decision for any family. And it’s made even more difficult sometimes by the fact that the process isn’t always easy. And sometimes it’s wrapped up in the paying for care element of financial assessment, all of the anxiety of what was going to happen to my income to my savings or we’d have to sell the family home and and sometimes the conversations around supporting someone through a transition into a care home is not always a good one. And of course that has been accelerated I think and exacerbate it even further. throughout this time. So, you know, there is no doubt that the the impact on people with dementia is inextricably linked by the impact on family members, people seeing evidence of change, increasing levels of needs, and cognitive decline and stress and anxiety. in people with dementia undoubtedly has an impact on family members. We support a network and I’m hoping that one or two of the group might be on this call actually, but we support a network called the National Dementia carers Action Network. They are a group of people who are either existing current or former carers of people with dementia. And they have been making a similar case, not quite key workers using slightly different language, but making the case that family members should always be considered as equal partners in care. And it goes beyond just being a visitor, somebody mentioned that word visitor there - as being unhelpful I think that’s absolutely true that family members who have been caring for and supporting people with dementia sometimes for years. Before they move into a care home, suddenly becomes seen as a visitor. No longer this ongoing role as a carer, but as a sister, a brother, a husband or wife, they should be able to maintain the relationship, which is defined by the relationship rather than just as a carer or as a visitor. But the point is that they have so much knowledge of the individual that they can provide that therapeutic intervention and support for people with dementia that can help comfort them and reassure them and help engage them in meaningful discussion and meaningful engagement or just have physical contact, is so important, that is currently being denied to so many people. And perhaps short sightedly too, because they can be not only of help to the person with dementia but to the care staff and and the and the care homes as well. So we’re well aware to somebody mentioned that there is new guidance out from the Scottish Government. One of my colleagues, actually works on the group that was developing that and know that she has been consulting with family members and carers. They are in the process of devising a family facing document, family facing guidance. but even the day that guidance was published we had three major care home providers on the media saying this has been ill considered and, we wouldn’t be doing it. So we have the complexity of a market, a care provision market, which says has over a thousand different care homes in Scotland. Numerous different providers from large scale, some very small scale, but some really excellent examples of how some care homes are supported individuals and families throughout this And some really poor ones too. We, just to finish, have been discussing with the Scottish Government, and making a proposal to say, you know, there is issues around communication, there’s inability for some people to get any information or regular communication with care homes that families need support. And care homes actually need support to help facility these visits. And we’ve called for every family to be allocated a named individual to work with them and with the care home. And to be in dialogue with health and social care partnerships and local public health. People are making decisions about re-opening care homes. But essentially the family’s need that and there are some people who don’t have the same voice. And Natasha and others have done a fantastic job in raising the profile of this issue. There is equally as many people, if not more, who don’t have a voice, who are quiet. And who are never going to campaign like that. And they are not, maybe active on social media and they maybe not have other family members. And they need to be part of this conversation as well, which is why we think it’s so important that they have named individual to support them, to liaise with the care home, and to help facilitate better communication and work out how visits can be done well and safely. That’s me, thank you.

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