“We heal, not in isolation, but in togetherness” – a role for the Care Home Care Coordinator?
Helen Cowan studied human physiology to PhD level at the University of Oxford. She then qualified with distinction in Adult Nursing and has worked as a nurse for 16 years in neurosurgery, cardiac surgery, elderly care, hospice care and clinical trials. She tweets @HelenCCowan
Resy Manalo, Lalaine Lopez Pesario, Gilbert Barnedo, Elsie Sazuze, Suzanne Loverseed and Karen Hutton are some of the care home workers who lost their lives during the coronavirus pandemic. Larni Zuniga, a care home nurse who ‘epitomised everything that nursing is about,’ died in April after spending 3 weeks battling coronavirus in the same intensive care ward as Boris Johnson. Between mid-March and mid-June last year, there were 35,067 excess deaths (those above the ‘expected’ number) among care home residents; at least 16,000 further individuals have died in care homes during the second wave of the pandemic.
How can healing even begin? The vaccine is being administered but the scars left by fear, fatalities and forced separation from families run very deep. Care homes need support - not soundbites, promises and inconsistent, ever-changing and opaque guidance from central bodies.
It is said that a journey of a thousand miles (which is what care homes face as they contemplate recovery) begins with one step. In strengthening links between care homes and general practice across Primary Care Networks, becoming, in a sense, the (often invisible) ‘thread that binds’, could the ‘care home care coordinator’ play a part? “Coming together is a beginning; keeping together is progress; working together is success,” said Henry Ford; “Alone we can do so little; together we can do so much,” said Helen Keller.
As a care home nurse shielding since the start of the pandemic, I currently work as a care home care coordinator and here are the ways in which I have been able to help.
Working with four surgeries and seven care homes (ranging from an 80 bed care home to a small convent and a private home where a handful of residents live alongside a family), I gather data on each of the 250 or so residents. Everything from their resuscitation status to when they last saw a doctor and which routine blood tests are due is included, acting as a visual reminder for the doctor of who is where and what is needed when.
Giving families the chance to share what matters most to their loved one with dementia is another important aspect of my role; having the time to listen on the telephone and co-create a shared narrative helps form a truly person-centred advance care plan. Relationships within the family and with the clinical team can also be strengthened, the process of care planning proving sometimes more important than the product, especially during such a time of enforced separation and sadness.
Medicines optimisation is important in the care home cohort; polypharmacy can increase the risk of drug interactions and adverse drug reactions, together with impairing medication adherence and quality of life.
Helping to arrange appointments between the pharmacist and care home nurse for structured medication reviews, I also act as messenger between the two. For example, after I had heard from a nurse of the ongoing struggle to administer apixaban twice daily at twelve-hour intervals to one frail resident, a decision was made by the pharmacist to administer once daily at lunchtime, during her brief window of wakefulness. Something, it was decided, was better than nothing for this particular resident; half a loaf being better than no bread according to the 16th century proverb.
The COVID-19 vaccine has now been offered at every eligible care home with older residents across England. Achieving this goal has not been easy. Inviting care home staff for vaccination in late December, I was surprised by the hesitancy, especially among some in BAME communities, and I was asked many questions and addressed many concerns, often still meeting with refusal. Keeping spreadsheets of residents’ consent or refusal to have the vaccine was another of my roles, working closely with families and care home managers as best interest decisions were made, sometimes in emotionally charged situations.
Planning for the second round of vaccines in care homes proved problematic, with inevitable movement of residents between homes making us realise that we were trying to hit (or rather vaccinate) a moving target. Within a single care home were recipients of different vaccine types on very different dates, with the data changing almost daily. Occasional COVID-19 outbreaks only added to the logistical challenge.
‘How did we end up turning our care homes into jails of enforced loneliness?’ asks one campaigner, who argues that, despite their heroics, ‘a paid carer isn't an intimate, can't be the memory, the gatekeeper, the beloved link to the familiar world’.
Distress, despair and heartbreak are rife among residents and families forced apart – and I can be a listening ear and an occasional advocate with my telephone calls, acting as a link in the broken chain, passing on requests for the “big little things” that make life more bearable. Whether it’s a call for a Communion cup or an appeal for a treasured teddy bear to be always close, each one is a reminder that, for the care home resident, as for the rest of us, ‘non est vivere sed valere vita est’ (life is more than just staying alive). Quality of life matters as much as quantity; let’s work together to retrieve what has been lost.
Curry N. Beyond Covid-19 wave two: what now for care homes? 2021 https://www.nuffieldtrust.org.uk/news-item/beyond-covid-19-wave-two-what-now-for-care-homes
Duerden M, Avery T, Payne R. Polypharmacy and medicines optimisation. 2013 https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/polypharmacy-and-medicines-optimisation-kingsfund-nov13.pdf
Ford M. ‘Treasured’ care home nurse dies after three weeks in ITU with COVID-19. 2020 https://www.nursingtimes.net/news/coronavirus/treasured-care-home-nurse-dies-after-three-weeks-in-itu-with-covid-19-27-04-2020/
Gerrard N. How did we end up turning our care homes into jails of enforced loneliness? 2020 https://www.theguardian.com/commentisfree/2020/may/10/how-did-we-end-up-turning-our-care-homes-into-jails-of-enforced-loneliness
Hopkins SA, Lovick R, Polak L et al. Reassessing advance care planning in the light of covid-19. BMJ 2020;369:m1927 doi:10.1136/bmj.m1927
Oliver D. Care homes need our support in the covid-19 era and beyond. 2020. https://blogs.bmj.com/bmj/2020/11/27/david-oliver-care-homes-need-our-support-in-the-covid-19-era-and-beyond/