Digital Social Contact

Roz Davies

22nd May 2021

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"People say they are worried about going into hospital - the biggest fear I think is of not being able to see and be with your family, and about the utter loneliness they fear at the end of life." 

                                                                                                 Mohammed Ali AKA Ali Aerosol (Street-artist/Curator)

This week my Grandma, aged 99, was taken seriously ill and rushed into hospital. Just to be clear upfront, so far she is still with us, but she is sadly still in hospital.

Lockdown has not been kind to my Grandma and many other older people. She has rapidly declined both mentally and physically in the last year. Lack of social contact, disruption of routine, restrictions on movement can all have a big impact on anyone, and potentially more so if you are older and vulnerable.

My fingers have been crossed that she would stay well enough to stay out of hospital and out of the need for care support in any way throughout the pandemic and she had done up to now. One of the things I have dreaded is the idea that she might go into an institution and that we would never see her again. I have heard and read of so many sad stories of this happening during the pandemic.

Almost inevitably, this week it happened. My Grandma went into the hospital and whereas pre-pandemic I was able to go and see her and hold her hand, reassure her she was not alone, this time was different. The hospital has a policy of one visitor only for the duration of the stay in order to minimise the change of the spread of Covid-19. As next of kin, my Dad took this place and has been allowed to see her once a day for one pre-booked hour. I absolutely think the hospital are doing the right thing for the vulnerable patients in their care but what sometimes gets lost in the crisis we are (hopefully) emerging from is the understanding that alongside medical care, equally essential is the love and the care of friends and family.

My Grandma was in the hospital for four days before I managed to get an answer to the calls I made to the ward she was on and before someone took pity on me and let me talk to her on the phone. I cannot put into words the relief I felt to hear her voice, to be able to says the things you want to say when someone you love is in a very vulnerable state.

It reminded me of when my Mum was dying of cancer pre-pandemic. The last time my children saw and spoke to her was via facetime on her iPad on the ward. A very precious moment for both my Mum and her Grandchildren.

I was left wondering: has social contact using devices become an integral part of care anywhere? What does good look like? How could we make it happen? Curious, I took to Twitter and asked:

‘Why aren’t devices available in wards to help people keep contact with their loved ones? Why is social contact not considered an essential part of care?’

I think I hit a collective raw nerve as it generated quite a response. There were heart-breaking stories of people not able to contact their loved ones in hospital during the pandemic and there were also some heart-warming stories of people who were able to use devices to keep in touch.

Mohammed Ali kindly shared with me his story of overcoming the barriers to ensure he and his family were able to keep connected to his Mum in her dying moments. In this article, Mohammed very clearly articulates just how important it is that we do work to get this right in end of life care. He has generously created a digital toolkit for healing and grieving digitally in a Covid-19 era for other families in a similar position.

Interestingly, one of the common responses was that there were devices available but there were barriers to using them such as not being told about them, the device or the wifi not working and the digital skills and confidence of patients and potentially staff. As someone who has done a lot of work in digital inclusion in health, this is a familiar story outside of the ward environment.

Ray Jones rightly pointed out that education and training of staff to understand the value of digital is key and shared with me this brilliant video of an 89 year old woman explaining why having an iPad and wifi in hospital was important to her.

It was hopeful to read the responses where NHS Trusts have recognised the value of social contact enabled by digital in the ward environment and are working on solutions.

Emma Murdoch shared that the Mental Health Services for Older People in Cardiff and Vale inpatients services have a family liaison services that connect people that has been very successful.

Elizabeth Sandham shared that the Northern Care Alliance NHS Group raised money and made sure each ward had an IPAD and allocated iPad appointment slots to relatives and personally connected the patients providing assistance throughout for those who couldn’t hold/use them. Kelly Kusinski said there was something similar at The Royal Wolverhampton NHS Trust and Laura Beechey mentioned there are also iPads at Halton Haven Hospice.

@KaiBoo77 shared a video of the virtual visiting initiative being delivered at NHS Dumfries and Galloway hospitals.

Toby Avery shared that Surrey and Borders NHS Trust had started the practice during the pandemic and intended to keep it in the long run and Lisa Emery mentioned that The Royal Marsden is going one step further by getting them connected to better WiFi and making them multi-use for patients and staff (for ward audits, surveys etc).

@BananaPixelsUK shared an Alpha for the "NHS Book a virtual visit" video service built in 48 hours at the height of Covid-19.

I also noticed that some of the examples were down to fundraising like the example @DonniesFund shared with me:

‘We funded @AngelEyeHealth web-based cameras in the #neonatal intensive care unit @uclh so that parents and other family members could see their very unwell babies, even when Covid rules (or life) prevents visiting. #ThanksToOurDonors #OneNHS@AngelEyeHealth web-based cameras in the #neonatal intensive care unit’

Another heart-warming story of solidarity and kindness was this one shared by @DyingWell_UK

‘On the chemo ward today an old lady refused help of nurses to get connected to the wifi on her ‘new iPad’, and instead singled out the ‘young man’ asleep in the corner, also on chemo, to be her tech guide. (He was very gracious, got it sorted  & it made me smile!)’

From my own limited experience and from the stories I have read, it is clear that social contact needs to be valued as an important part of both end of life and recovery care and actually it can cause harm to patients and their loved ones if we don’t provide this vital compassionate element of our service.

The many examples that were shared show us the art of the possible. Some of the key considerations for using digital to enable social contact in the context of inpatient end of life and recovery care which have emerged from this conversation include:

  • Staff having the right skills and who understand the value of (digitally enabled) social contact
  • Access to working devices and wifi
  • Support for patients who might not find it easy to use digital devices
  • Clear communication with patients and their loved ones on the availability and process for digitally enabled social contact
  • Privacy and safety policies

In the world of digital inclusion and innovation in health and care there is a lot of talk about reset and recovery and questions about what innovations developed in response to the pandemic should we build into future health and care services. I really hope that valuing social contact as integral to end of life and recovery inpatient care and embedding digitally enabled social contact into every ward in every hospital is one of those innovations.

If you have any more good practice stories of policy and practice please do share widely and if you have any influence in this area please do consider making this ambition a reality. You will make a huge difference to the lives of patients and their loved ones at the most vulnerable and difficult of times.  

Thank you to all the people who kindly responded and shared their stories and good practice.  

 

 

 

Roz Davies

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