When my father arrived at Castle Grove just two weeks before lockdown in March last year, he did not have a mobile phone, had never had cause to use a PC, laptop, tablet or any other form of digital device. Yet he is an incredibly social 95 year old who loves to chat with people of all ages, had a very close relationship with members of his family and a large circle of neighbours and friends with whom he was in very regular contact. In 15 years of living alone he would make the short walk into the town centre most days or drive his mobility scooter to engage with staff in the bank, post office, GP surgery or supermarket. He loves to be fully up to date with what is going on within his family, locally and around the world.

With the onset of lockdown 1 the change to his lifestyle was much more dramatic than those already in a care home as he had not had time to properly adjust and this was a particularly difficult time for us all. We had got him a mobile phone when he arrived and he needed help from the nurses in the early days to use this and as he is pretty deaf often the conversations were very difficult.

The advent of the booked skype calls at the Castle Grove office did help as we found he engaged much better on screen and certainly had a greater understanding of the conversation. We were also able to show him photos etc.. on the screen to keep him in touch with what was going on in our lives. We then moved back to controlled visits in the garden for a short time which when the weather was good worked well but on a couple of occasions it was too cold for him but any contact was better than none. During lockdown 2 we were back to skype again for a period before controlled visits inside behind the plastic screen. This was by far the worst experience as it literally felt like a prison visit! I was lucky enough to get two in room visits and was actually able to give him a hug and hold his hand after nearly 10 months before we went into lockdown 3.

During this period Castle Grove had made a number of improvements including upgrading their broadband to enable each room to have access. This then gave me the opportunity to look at options to keep in touch on a more consistent basis and the Facebook portal seemed to be the answer, although getting a 95 year old to understand voice recognition has caused some very funny moments!

Dad is now able to see and speak to any member of his family at any time he wants by just asking the machine to call and he is really engaged in the conversation, noticing everything around us on the screen. We have bought portals too and the calls also pick up on our phones if not at home. Portal to portal the picture is really clear and the sound is excellent, so he can fully engage in the conversation, see his new great grandson, the various dogs and cats he loves so much and is certainly much more chatty then when on his mobile phone. He does seem to be really enjoying this and has helped hugely until we can finally get the green light to commence visits again.

My inbox starts alerting me to an influx of emails. Anxiously I click on each one searching for the word negative. After ticking them off against my resident and staff list, I can finally breathe, all results in, all negative, we are finally out of outbreak.

Unless you’ve experienced an outbreak in a care home you really can’t imagine the rollercoaster of emotions - pain, trauma, loss but also a sense of pride and camaraderie between the team.

I update the capacity tracker; the tracker I’ve come to hate as the pandemic unfolds and the list of questions increases. Our home is now open. The now vacant beds reflect the loss of life, grieving families and a missing part of our care home family.

You want to rejoice the end of an outbreak, you feel like your team deserves a medal or at least a shared pizza and cake but no, infection prevention still means no sharing of food or encouraging gathering around food without a mask. 

There’s still so much work to do. Those who have survived Covid have increased needs. Many have spent considerable time in their bedrooms, they need to move, stretch and socialise.  We have to find ways to boast mental and physical health. 

Our home has empty beds. Our maintenance person has never had so many empty rooms to prepare at once. Each room has been deep cleaned, refreshed and awaits our next admission. Outside of this pandemic we invite individuals to look around the home, choose their wall paint colour, their front door colour, join us for afternoon tea. Now we have to send pictures, welcome someone into a home neither they nor their relative have ever entered before. When they arrive rather than introduce them to everyone, we need to ask them to live in their room for a fortnight. 

The home smells of cleaning products, paint, mixed with the baking from the kitchen. I sit at my desk, I should’ve been at home ages ago. I’ve lost count of the extra hours I’ve worked days and nights they all merge. I stare at my screen, then outside and then back to my never-ending to do list.

I cannot help but reflect how did this virus enter into the home? Did we miss disinfecting some items coming in? Did someone not part of the testing regime bring it in? Did another professional unknowingly bring it in? Was it the contractor that did some emergency work? Was it our resident who’d been in hospital for an appointment? We know we will actually never know but you can’t help but wonder if it was a failure on your part. It doesn’t help that you heard someone else say ‘oh the care home my friend’s mum in hasn’t had it - they’ve been so careful’. Do they not realise how hurtful that comment is - we’ve been careful, we’ve studied countless guidance, followed people on Twitter, Facebook, LinkedIn, trying to learn best practices that we could use within our own home….but it still got in. 

We’ve been asked if we want to take part in a debrief on what was good, what lessons could be learnt. The good was all the amazing staff that continue to care, picking up extra shifts, dropping off supplies to their colleagues isolating. The good was the families sending emails recognising, thanking and praising the staff efforts. The good was finding a drink or food that a resident finally started to have, having complained that chef’s previous dish tasted like dishwater! Clearly it didn’t but Covid certainly destroys people’s taste buds.

The lessons - so many but include; pause and take care of yourself, know you will get through the outbreak even if at times it feels impossible. You will not please everyone, there are not have enough hours to update paperwork to the standards regulators expect, you’ll never have a rota that stays unchanged for more than an hour, some families will not be satisfied with your efforts. You’ll come to find all your imperfections - it might be that your staff contact numbers aren’t actually as up to date as you thought; that the manager, team leader and administrator all have to isolate, and you realise how much information you haven’t shared. It might be that the individual & family that have never been comfortable talking about end-of-life wishes, is the person who passes away in the middle of the night - and you still don’t know what their wishes are next. 

One lesson is that an outbreak acts as a reminder on how amazing all staff working in care homes are. 

The other lesson is that post outbreak, your home can feel like its soul has been ripped out but laughter returns, in time we will heal emotionally, physically and financially. 

The most beautiful people I’ve known are those who have known trials, have known struggles, have known loss, and have found their way out of the depths.”– Elizabeth Kübler-Ross

Always ask ‘could it be sepsis?’, that’s what we have learnt over recent years when noticing any of the insidious signs so easy to miss yet so life threatening for those living in care homes.

I have said throughout this year dominated by coronavirus that the virus hasn’t cured sepsis and in fact even as I type this sepsis remains the world’s biggest killer above Covid and cancer too with 11 million global deaths in 2017.  In the UK we see 56,000 deaths and 144,000 cases each year (box1).

Over the 9 years of the Devon Care Kite Mark, the predecessor to the Devon Care Home Collaborative, of the many things we have done together as a Devon residential care provider led initiative, introducing the reciprocal peer review programme has perhaps been one of the most impactful elements.  During all this time we have visited and been visited by many colleagues who understand the challenges and the importance of ‘sharing our treasure’.  Every peer review I have done has included asking appreciative inquiry based questions of the senior team being visited about sepsis (box 2).

DCKM Sepsis Peer Review questions:

1. Score your home on a 1-10 scale re overall re SEPSIS recognition and management…… Talk about this..
2. Have your staff had any training? Tell us about this..
3. Are you aware of the tools and material provided by the UK Sepsis Trust? Speak to 2 staff members about sepsis…….
4. Have you dealt with any cases at your home?
5. What learning, what went well & what didn’t?

I know there is greater expertise in our NHS system and working together in how we skill ourselves us is vital – we are so grateful to Pippa Richards for example – the Sepsis lead nurse at Musgrove Park Hospital, Taunton, who as a friend of the Kite Mark gave time to support us with key facts and do’s and don’ts on sepsis recognition, response and care including a talk at last year’s annual DCKM December ‘Jamboree’ also joined by Kate Terroni, Chief Inspector at the Care Quality Commission.  Whilst we have had our first year without our annual celebration of work, welcoming friends and guests as well as the marvellous festive cakes we always share, we do intend to make sure 2021 has lots of opportunities to come together and share work including our own best practice top tips on how we address Sepsis in our work.

All of our staff have been very receptive to the key message in this piece – if concerned about signs of decline or deterioration in any of our residents we must raise an alert and when speaking to colleagues or seeking external help and say “we are not sure but it could be sepsis”.  Reporting this as a risk could save a life mindful of another of the things I will always say when talking about sepsis; “every missed hour that passes where we don’t get help for a person with sepsis, the chance of fatality increases by 7%”.  So just to say again- always ask ‘could it be sepsis?’.

- George Coxon

For me family has always been the people around you that you can rely on – the ones that are always there, the ones who don’t judge, the ones that you will do anything for.

When designing a model of care we wanted to instill these family values in the team; into the community that we called a care home.

We have found that the language that we use, the labels that we attach to both people and interactions are extremely important. The word that is used to describe a person can set the tone of the way in which we approach them.

The label family immediately gives a different status to the person about whom you are referring to. You give your family member more importance than the unnamed person that you met on the street two days ago. If someone is your family member there is a social expectation that you will know everything about that person. If I asked you when your Aunt’s birthday is, there would be an expectation that you would know.

These values are values that we want to actively encourage in care communities.

So we dived into the world of sociology and found the generally accepted definition of family member to be:

“We’ll define family as a socially recognized group (usually joined by blood, marriage, cohabitation, or adoption) that forms an emotional connection and serves as an economic unit of society. Sociologists identify different types of families based on how one enters into them.”

At the time it made perfect sense. We want to create families within our communities where the barriers are broken down, people are important to each other, and love and bonds are created through knowledge of each other's life histories. It is our hope that our families will then be able to share their dreams and desires with each other.

So in place of the word service user, resident or client we asked our teams to refer to those people living with us as their family members. The label creates the attitude and drives the values and behaviour that one would expect in a care setting; trust, happiness, openness and love. To be a family member in an Evolve Community does not mean that we are replacing the original family – we simply become an extension of each other’s families in order that we can work together to support the person in care.