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:
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
The Power of Music in Dementia Care
There is power in music. Revolutionaries have used music as a platform to convey messages of change, during periods of civil and societal unrest. Protest songs have illustrated realities of war, injustice, civil rights, while artists have used music to record their pain and personal experiences of these times of uncertainty. Music, in all its forms has given hope, invigorated, and touched millions across the world. While we may think of social change firstly in terms of the ‘power of music’ I would like to propose a bigger musical power to you; the magic of music for those living with a dementia.
We Associate Feelings and Memories with Music
Many of my happiest memories are often recalled when I hear a song and it takes me back to lying in festival fields, beer in hand and squinting through sunshine watching a band I love. Equally, some songs can remind me of times I have lost relatives and have found comfort in the melodies and verses that eased my pain. For many of us, music provokes emotions and feelings from times passed us by.
It’s good to look at living with a dementia as a journey; each person has their own personal experience of that journey and how it affects them can be very different. The further a person living with dementia travels on their journey the more difficult it becomes to communicate and recall memories. While conversation may fade and words forgotten, the magic of music remains.
Many studies have been carried out on the relationship between music and language and while more recent studies have found that they do depend on some of the same brain systems, they originate in different parts of the brain. Which is why someone living with a dementia may have lost the words to say, but a song from their past can resonate and reanimate within them.
At Frome Nursing Home
Long at Frome Nursing Home have we found that musical occupation or what some medical professionals may call ‘music therapy’, has enabled our family members to reconnect and reminisce with moments of their past. This is not incidental, when we welcome a new member into the Evolve family we learn as much as possible about their life journey.
This learning allows the home to shape the home and find the sounds that fill the air between all the walls. This knowledge determines the radio in the background during mealtimes and which life performers are invited into the home.
Music allows members of our family with dementia to express themselves, whether that be through dancing and singing for those who are starting their journey with dementia to movements, humming and tapping for those who are coming towards the end of their journey. Recognising music validates feelings of self-worth, and this validation can help relieve a person from any feelings of anxiety around any confusion they may have. This connection can remind a person who they are and where they have been.
This can be emotionally powerful to witness, particularly in later stage dementia. Seeing the change in someone’s demeanour and behaviour at the sound of a note or beat. The brightness in their eyes, the tapping in time and the humming through smiled lips is a heart melting moment like no other.
While the likes of John Lennon and Bob Marley gave a voice to millions, I guarantee you there is nothing like the overwhelming warmth of seeing a loved one living with dementia invigorated by the sound of their favourite song.
- Josh De Witt
Strong leadership is at the heart of every good and outstanding care providing organisation, without good leadership we know the quality of care provision declines. Over the past few months, Skills for Care have been working with the sector to understand the challenges it’s facing around leadership and management and the support needed to develop strong leadership skills. Over the summer, 588 employers (including care providers, Local Authorities and learning providers) responded to a survey which asked about:
Priorities in leadership support and development needs
There were five priority areas identified from the research:
What should leadership development support look like?
It was clear from the findings that a ‘one size fits all’ approach is not desirable. Support needs to recognise sector diversity and be tailored to meet the needs of different services. It needs to be inclusive, accessible, with flexible approaches and of high quality. Whatever the future support offer might look like, it needs to clearly communicate the tangible benefits of engaging in it.
Peer support, coaching and mentoring, leadership programmes, webinars, networking, action learning and online leadership tools were all felt to be valuable approaches for delivering support. New channels and methods should also be considered using digital technologies.
It was clear from the findings that this support should be available for all levels – leadership isn’t defined by a job title and shouldn’t be restricted to those in managerial positions. Leadership is a valuable skill in roles from entry level to the most senior position.
Positive features of support right now
We also wanted to understand what support the sector values right now and we gathered many positive examples of a sector supporting each other during incredibly challenging times. Organisations have supported their workforce through good leadership and supportive line management, providing opportunities for remote working and using digital technologies.
There’s been support from external organisations such as local authorities or clinical commissioning groups. Peer support, networking and joint working has enabled the sector to share challenges and good practice, resulting in a greater unity. And the existing support from Skills for Care was also acknowledged.
It was clear throughout the research that there’s a real need for recognition and respect for the work of the sector, highlighted even more so from the impact of the pandemic and the importance of strong leadership in achieving this.
Skills for Care are now working closely with several focus groups to further explore the findings of their initial discovery work and inform and shape their future leadership development offer.
Here are 10 tips to help you respond when you’re in a conversation about care fees:
1) It doesn’t matter whether your relative is at home, in a care home or somewhere else, no one should ask them to pay for care until it’s been properly decided who is legally responsible.
2) NHS funding for care is called NHS Continuing Healthcare; it is available to people who meet certain criteria. Make sure you read the criteria.
3) If anyone in health and social care tells you your relative has to pay for care, ask them why they are saying that – and on what basis they’ve reached that conclusion. They can only reach that conclusion after NHS Continuing Healthcare funding has been considered.
4) You don’t have to complete ANY financial assessment forms – and certainly not before a Continuing Healthcare assessment. If you’ve had the Continuing Healthcare assessment and your relative is not eligible, you still don’t have to complete any financial assessment forms; you can simply choose to pay. Also, be sure to also appeal any Continuing Healthcare funding decision you disagree with. The health and social care authorities have no business looking into your or your relative’s finances until the Continuing Healthcare process is complete. It is none of their business.
5) Some people working in health and social are have not had adequate training in the legal context in which they work. In other words, when they’re giving you incorrect information about care fees, they may not even realise that they may be in beach of their own code of conduct, and possible also the law.
6) Familiarise yourself with the Care Act and how it helps you with Continuing Healthcare funding.
7) It doesn’t matter what diagnosis a person may have; this does not affect their eligibility for Continuing Healthcare. It is their day-to-day care needs that count.
8) If your relative receives Continuing Healthcare funding, this covers ALL their social care needs, too. It also covers the costs of accommodation, food etc in a care home.
9) Don’t let anyone discharge your relative from hospital until a Continuing Healthcare assessment has taken place.
10) Just because your relative may have been paying for care up until now doesn’t mean they should be – or that they should be in the future.
…and an extra tip:
11) Don’t let anyone put you off having a Continuing Healthcare funding assessment. People are likely to tell you it’s “not worth it” or that you’re “not eligible” or that they “don’t have time to do an assessment” or that you “have to start paying first” – and many other untruths. Get informed. Read as much as you can in advance.
So if you find yourself having conversations about care fees with people in health and social care – and also care providers – be vigilant. Don’t let them steer you into paying for care before it has been properly ascertained who is actually legally responsible for paying. Never assume it is your relative.
I’m not good enough. Why did I do that? I’m wasting your time. I’ve done it wrong. They don’t believe me. Why did I say that? They don’t want me here. What is wrong with me?
Many of us live with a mental health problem.
I live with anxiety. Often my thoughts get stuck on loop and I struggle to break a continuous feeling that I am inadequate in both who I am and what I do. Even as I write this, I do so wondering whether this will be worth the time I’m spending on it.
I’m fortunate in that I work for an employer who recognises the importance of acknowledging that I can suffer from poor mental health and encourages me to be open about it. I am told that the strength of a group relies on the strength of the individuals within. By understanding each other we can work together more effectively to support those who live at our homes.
That encompasses all professional relationships within the home - carer to carer, carer to manager, manager to catering staff. After all, how can we expect to take of others if we cannot look after ourselves. By coming together, we can achieve and sustain the outstanding standards we set ourselves in providing care.
When I started with the Evolve Care Group, I was encouraged to be open and embrace my identity. I must admit that this made me feel somewhat uncomfortable. I didn’t want to present my baggage or air my dirty laundry in full view for all to see. But by embracing the openness and honesty bred throughout the company I now enjoy a two-way relationship that benefits both my employer and I. This ‘culture of comfortability’ created in my place of work allows for others to recognise when I am struggling and give me either the space or reassurance I need for me to operate to the best of my abilities.
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.
Ogwell Grange, Rectory Road, East Ogwell, Newton Abbot, Devon, TQ12 6AH