Caring for Britain
Journeys through care Caring for Britain Journeys through care The stories
The stories in this report show that there is much more to be done to support older adults. They also show that there is some ground‑breaking thinking, research and delivery happening right now. This report also contains the stories of real people, who have shown great courage to share how their lives have changed during their care journeys. The authors are grateful to Tony Watts, leader of EngAgeNet, for his work in writing the personal stories, based on interviews he conducted during the spring and summer of 2020 – for this reason, and decades of campaigning for older adults, the ‘last word’, of the report belongs to Tony.
Legal & General Thought Leadership Commitment A vigorous national debate, about the issues that affect our customers, colleagues and shareholders, is an important part of national life. We want to stimulate the big conversations and ideas that can contribute to the progress of our society and our economy. Legal & General is delighted to support the work of Think Tanks and of academics and specialists in areas relevant to our business. As part of our commitment to encourage debate and freedom of speech we exercise no editorial control over the conclusions or recommendations made by our contributing authors. Legal & General 3 Foreword
At the heart of this timely paper is the and the experience of care professionals aspiration that Tony Watts expresses: shows the power of what is happening that all older people should be able to around us all right now – people with lead rich fulfilling lives connected to vision are working for the people family and friends. The paper skilfully who matter far more than ownership intersperses the stories of individual older distinctions, the users of care. Britons who have confronted the realities There are millions of people dedicated of today’s care system, with the stories to caring, and even in today’s of individuals and organisations working circumstances, there are reasons for disruptive innovation and radical to be hopeful about the future. This improvements in the quality and quantity report is about what can be done, and of care available. is being done, today. The leaders, who The stories told by Marguerite and Ken, have written about their lives and their by Phyllis and Peter, by Brenda, by Marion organisations, are out there right now, and Jack, and by Monica are powerful contributing to the care of millions of Professor David Grayson, CBE insights into both the good and the bad people. It is right that we should all aspects of the care that older people consider how to build a better, more use today. integrated health and care system but I hope after you have read “Caring for it is also right to recognise that there Britain,” that you will share my sense of Each of the organisations in this story are people with ideas, energy and excitement and possibility. The possibility of a journey through care come from compassion who are changing the for good later lives; for extended healthy different places. Some are entrepreneurial system every day, right now. lifespans. The possibility that many more charities. Some are for-profit enterprises Britons can enjoy greater choice in later with purpose. What binds them is As a Legal & General customer, I am life. The possibility that digital technology their purpose; what they all have in delighted that L&G has taken such a and Artificial Intelligence offers for common is an absolute commitment to powerful, leadership role on making Later greater personal independence for longer empowering the people who need care, Life better for many more Britons. “Caring and for more personalised health care. their families, their carers, their medics for Britain” is one more tangible example The possibility to build a preventive and their advisers. All of these people, of this leadership. I hope that L&G will National Health Service rather than a from consultants to care professionals to now use its convening role to generate reactive National Sickness Service. financial advisers work together to create an informed conversation around how an ecosystem that helps those who need the innovations described in the paper, care to meet their goals. can help to reinforce each other and spur further innovation from public, private, Telling the stories of the energy and charity and social enterprise sectors. innovation of start-ups, the research from As Tom Lord reminds us in his essay, our universities, the insight of charity COVID19 has put added onus on healthy leaders, the advice of financial experts lifestyles. We should use this once in a generation moment, to create radical improvements in support for a good and healthy later life, where individuals When your loved one starts to change, that is a very and their families have genuine choices. disempowering moment. Being able to bring As a campaigner, I want this report to someone in, and being able to keep in touch with stimulate more positive collaboration that carer, is a way of empowering a family when it and further innovation. feels like they’re losing control.” Rachael Crook, co-founder and CEO, Lifted Caring for Britain Journeys through care £5m Positive developments Newcastle post-COVID in UK care, happening care home prototypes right now
new kinds of leaders like Rachael, Max 1and Andrew
the development of new and better homes for older people, discussed by John Galvin, 2Adam Hillier and Tom Lord
high quality information enabling 3,000 marketplace tools to empower care users New homes being built 3 – pioneered by Andrew at Care Sourcer for retired people
new roles for employers 4 that Emily outlines 8
£6m of grant funding to deploy to companies helping the new independence- healthy ageing market at-home-technology from Chris at Current Health 5 new phone apps that empower families and friends 6from Rachael at Lifted new cloud-data-processing, like Max at Birdie Care, that can spot early signs of health problems 7 coming down the tracks Legal & General 5
Building up the country’s research about the ageing demographic
Inclusive Capitalism is Legal & General’s purpose and it means that we share our £20m success with our investors, customers and society. As we have 10 million Partnership with customers, all of whom are ageing and Edinburgh University 1.25 million are over 65 – our oldest annuitant is 107 years of age – we are supporting the best research into understanding the ageing society.
teamwork building technology to bring the people needing care, their family, their medics, their 8 social workers and their care workers into one personal and tailored ecosystem new ways of working for carers, created using the latest of behavioural science and medical 9 research, to build new kinds of working cultures
new resources to plan for funding care like £4bn 10 those Tony discusses Partnership with Oxford University Caring for Britain Journeys through care Contents
p16 p18 p20 What happened when I Setting up your own Case study: first needed help? care ecosystem Phyllis and Peter Marguerite and Ken Andrew Parfery Care Sourcer Marguerite and Ken’s experiences show Andrew writes, with years of experience Phyllis and Peter explain how they what happened to them as their health running care organisations, about how changed their home to stay in it, the changed and they started to encounter families, friends, and those needing care, adaptations they made and where they the decisions involved in setting up care. can build their care ecosystem. Andrew found good help. explains how much can be achieved, right now, within the current system and how Care Sourcer, the company he co-founded, has designed a marketplace where people can match their care need with local care services.
After her last fall, Marguerite was The coronavirus pandemic has I’m still fit and healthy,” she says able to return to her own home pushed awareness of the care defiantly. “He’s not going to go from hospital because the couple system to the top of the public’s into a care home. had previously invested in some priorities. For millions of people, Phyllis home adaptations such as a stair lockdown has meant lift and grab rails throughout the experiencing what it can be like house and into the garden.” to be an older person. Andrew
Andrew Parfery Co-founder and CEO of Edinburgh based Care Sourcer since January 2016.
Care Sourcer
caresourcer.com Legal & General 7
This paper, written by real people experiencing the care system, and by a range of specialists, steps through the kind of questions and issues that people and providers face as they react to a need for care.”
p22 p24 p27 Giving up work to Using your home to help Case study: provide care with your care Sandy, David, & Emily Holzhausen OBE Carers UK Max Parmentier Birdie Care Sandy’s father Emily describes how millions of people Max describes the concept of ‘ideal provide care for their friends and care’, designed to support the physical Sandy and David explain the difficulties relatives, and looks at how this can independence of an older adult – the involved with making, and getting, impact on people’s jobs. Emily shows concept is at the heart of Birdie Care, decisions to support Sandy’s father. how important it is to have a plan and the company he has been building since she looks at the way that employers can 2017. Max also explains how more help to support existing and new carers. structured data can help to understand what accelerates a person’s decline in health, identify infection flags and create a ‘very high resolution picture’ of the older adult.
Half of all women will have …older adults need a much more You’re trying to make huge provided unpaid care by the tailored, proactive and decisions on behalf of someone time they reach 46, and by 57 coordinated system of care at else that will affect their for men, which makes care a home, where the older adult is at wellbeing and their quality of life workplace issue.” the centre of the picture. in their last years. It’s also Emily Max incredibly hard work, very tiring, and emotionally draining. Sandy
Emily Holzhausen OBE Max Parmentier is the Director of Policy and CEO of London based Public Affairs for Carers UK. Birdie Care since July 2017.
Carers UK Birdie Care
carersuk.org birdie.care Caring for Britain Journeys through care
p28 p30 p32 What about our Case study: Building the complete family finances? Brenda companion for anyone Tony Mudd St James’s Place caring for a loved one Tony considers how and why financial Brenda writes about how she cared Rachael Crook Lifted advice should be a key chapter- for her Mum and how much she now Rachael tells her Mum’s story and how heading when families are creating a misses her. this led her to co-found Lifted to do things care ecosystem. He also looks at how differently, for those people needing care capacity is being built so that more and their families. Rachael explains the people can access trained advisers technology platform she and her team with specialist knowledge of care has built to interconnect her clients, their and family finances. families and their carers. Rachael also explains the importance of building a great culture that puts carers at its core.
Where advice is used, it is almost I am 66 and – until she passed When your loved one starts always received at a crisis point, away in 2018 aged 93 - was a to change, that is a very quite often when family long-distance carer for my Mum. disempowering moment. Being members understand that their As her only child it was down to able to bring someone in and older relatives can no longer me to organise her care: at the being able to keep in touch with safely live independently.” time I lived in London, she that carer, is a way of empowering Tony in Canterbury.” a family when it feels like they’re Brenda losing control.” Rachael
Tony Müdd Rachael Crook Divisional Director, Co-founder and CEO of Development & Technical London Consultancy at St. James’s based Lifted. Place Wealth Management since 1993. Lifted sjp.co.uk liftedcare.com Legal & General 9 There are big challenges in how the country supports“ people who need care, as our case studies show. There are also great innovators who are right now changing the quality, coordination and delivery of care.”
p35 p38 p42 My Thursday: Safe and simple Case study: A day in Evelina’s life homecare tech Monica Christopher McCann Current Health This is the story of Evelina’s Thursday. Chris explains how chronic diseases Monica recounts her search for Evelina is 24 years old and works for can be managed and treated differently, retirement housing to meet her and her Lifted (the company co-founded by and how as a society we should focus husband’s independence goals. Rachael Crook). on preventative treatment. He explains how the technology and insights developed at Current Health are delivering improved outcomes for their clients and for the NHS.
p37 Case study: Marion and Jack
Marion and Jack explain how an accident There must be greater focus I actually contracted changed their lives and how “gaps in the on preventive, proactive health Coronavirus quite early on and system” prevented them from achieving and care if we are to continue had to go into the local hospital, their ambition to live independently for as delivering high‑quality, and they were very supportive long as possible. universally available and of us both.” accessible healthcare.” Monica Chris
They do not want to move into a Chris McCann care home, so they are now trying CEO of Current Health to identify suitable supported since 2015. living accommodation.” Marion
Current Health
currenthealth.com Caring for Britain Journeys through care
p43 p46 p50 Finding and moving to Getting used to life in a Let’s work together to new accommodation new community design the future of care John Galvin and Adam Hillier COO, Tom Lord Tony Watts OBE Elderly Accommodation Counsel Inspired Villages Chairman of the South West Forum on Ageing John and Adam combine their Tom runs retirement communities all experiences of supporting millions over the United Kingdom and has spent Tony has spent much of the last 30 of older people at the Elderly the past few years creating villages. years of his career writing about and Accommodation Counsel to explain the Tom explains how important it is to campaigning on behalf of those in ups and downs of finding, and moving to, help people to get used to life in a later life, combining this with freelance new accommodation. John and Adam new community. As well as looking at writing on business and property. He look at the different events that can ExtraCare, Tom explains how his team helped establish and edited the UK’s trigger a move and they also consider have developed the role of ‘wellbeing first national newspaper for older how people are adapting their homes to navigators’ to support residents as they people, and now chairs the regional prolong their independence. join a new community organisation representing older people in the South West as well as acting as Communications Director of EngAgeNet, which represents older people nationally. He received the OBE in 2014 for services to older people.
Quite often, people who have a Buildings, services and facilities We urgently need a readily- crisis moment make a decision matter a great deal but accessible choice of housing and based on finding that: “actually community, belonging, support care support resources enabling my home doesn’t work, I need to and friendships are the crucial all of us to not simply eke out our move quite quickly, where can I pieces of social infrastructure last years… but to lead rich, go that is going to be suitable?” that contribute to feeling safe fulfilling lives, connected to John & Adam and secure.” friends and family.” Tom Tony
John Galvin Tom Lord Tony Watts Chief Executive at Elderly Chief Operating Officer at Campaigner on retirement Accommodation Counsel Inspired Villages, HQ in issues and Chairman of since 1995. Adam was London. the South West Forum on John’s Deputy until he Ageing. joined Legal & General in summer 2020. Inspired Villages
eac.org.uk inspiredvillages.co.uk Legal & General 11
My Care journey planner
Plan g an en eal r l e ange en a en er l
an an e l a e e er ng n lann ng r an a e e le r e a l le a n l
Understand 1 n er an e are lan a e an r n n T
Find 2 n e n er an r nee an g al e en an n e r g e le an e er r
3 Fund r e ar e n a a la le
Event Event Plan Action 4 Ge all r re ear ge er n ne la e an r e n a lan r ee all e en n ne la e Outcome Outcome Caring for Britain Journeys through care
Your checklists These decisions will create Your Care Journey your care ecosystem Preparing for a life changing event Understand
Your health situation and needs
• GP planning • Mental and physical health diagnostics • Medication timetable • Repeat prescriptions • Understanding your capacity to complete Activities of Daily Living eisure artners hobbies an ami Set your goals
• What can you achieve, now and in the future? chie in • Overcoming obstacles or in our oa s • Adding value to every day
Examples Walk 1 mile, go on holiday in 12 months, a et ea th make dinner, read ten books, walk monitorin we bein unaided, lose one stone in weight, leave a legacy to grandchildren ncome bene its Figure out what you can do to achieve your goals
• Wellbeing • Rehabilitation Planning your care ecosystem in the • Exercise early years of your retirement, rather • Socialise • Hobbies than having to create it in a few days • Habits after a health crisis, will focus your • Volunteer resources clearly on your goals, your independence and your quality of life. Legal & General 13
life changing event
Find Fund Action
Health and care Paying for health and care Prepared plan in place
• Medical care • Calculate cost of ‘care’ , what the NHS • Health professionals • Hospital care will provide, and how much you are • Finance package • Personal Care entitled to through the means-test. • Informal care network • Pharmacy • Find Financial advice • Lifestyle choices • Dentist • Council liaison setup • Accommodation plan • Optician • Monitoring • Advanced care options • Physiotherapist • Know your rights • Employment changes • Podiatrist • Technology tools • Workable range of goals Securing your income Wellbeing • Review state benefits • Family time • Bank accounts • Social Care • Insurance • Network of friends • Annuities • Leisure • Private Pension • Hobbies • State Pension • Charities • Carers’ benefits • Equity release Employment Quality of Life • Work • Informal carers’ work • Transport • Hobbies • Technology Technology
• Cyber services Independence • Monitoring • Smart phone • Power of Attorney • Video with family • Expressing your wishes about health decisions • Identity Safety • Lawyer • Accommodation • Advocacy • Transport
Law
• Lawyer • Citizens Advice Every one of us will have a journey through care and everyone of us will rely on a care ecosystem.” Caring for Britain Journeys through care Introduction
Seventy two years ago the NHS was created to look after our health, while local councils assumed responsibility for Social Care. Today, in 2020, despite multiple reviews and much debate the basic framework of free health and means-tested care delivered by a range of providers remains intact. There are, though, changes planned for the 2020s. The NHS Five Year Forward View imagines a much more localised and patient-driven, preventative organisation and the government promises a white paper to reform social care. As these important changes are worked through into daily realities, though, there are today some real agents of change. This paper sets out the very best of public, private and charitable work in the care sector. The contributors each describe new kinds of thinking, new styles of leadership thinking, new technology, new kinds of housing and the clinical advances needed by our ageing population. This paper is neither sentimental nor judgmental – we seek only to add the unheard voices of older adults to the voices of leaders who are creating a new kind of care system right in front of our eyes. John Godfrey Corporate Affairs Director Legal & General The care challenge The reality of social care for older people variation between regions and between across the UK is often problematic. the UK jurisdictions, and of poor and 1.3 million older people request care disconnected data. each year while only c. 700,000 get it As a result, there is a poorly coordinated and the average cost of care is more service that is not designed to put than £30,000.1 There is no national the patient at the centre of their own system of long-term care as there is a care ecosystem. As well as a sclerotic national system of free healthcare at and confused supply of care, the next the point of delivery. What we have is a two decades will see more big rises in patchwork quilt of services administered demand. A system struggling to service by local authorities whose budgets have today’s elderly population will worsen as shrunk over the last decade. The biggest the number of over 80s steadily rises; the contribution to care is made by informal growth in long-term conditions such as carers whose value is estimated at £140 diabetes and heart disease increase the billion – about the same economic size need for services. The average cost of as the NHS.2 There are inequities built health and social care for people who do into the system such as the NHS paying not have a long-term condition is around for care after a heart attack or stroke £1,000 per year; this rises to around but patients diagnosed with dementia £8,000 per year for people who have 3 or have to pay for their own care. The more long-term conditions.3 In short, our boundary between health and care is health spans are not growing at the same hard to navigate and there are issues of rate as our lifespans, leaving more older people trapped in poor and worsening “If you organise care better – and that means health. Closing the gap between health span and lifespan is the work of a coordination, personalisation, real time, generation and will require effort from proactive instead of reactive - you can support many different fields. physical independence for a much longer period of time.” Max Parmentier, co-founder and CEO of Birdie Care
1 Adult Social Care Activity and Finance Report, England - 2018-19 [PAS] and payingforcare.org 2 The Carers’ Covenant, Ben Glover, Demos and Legal & General, 2018, p 6 3 Adult social care at a glance, National Audit Office, July 2018, p 22 Legal & General 15
i h a e l ne ll ng l e rea en ng llne eg an er
L ng er l a n n er en e a er a n eg ear a l re unction
Professor Bruce Guthrie, r l nge n l ng eg e en a al ra l The Advanced Care Research Centre ow
a e r rra en all e Time llne ra e r e an all a e are
The Advanced Care Research Centre relevant to the future of care provision, care. The partnership with Newcastle is a £20 million partnership between particularly its role in preventative City Council will build a 20/25‑bed ‘new Legal & General and the University of interventions and earlier diagnosis. As the model residential care home’ with built-in Edinburgh to create high-quality data- report will show: unstructured data and technology and specified to create a less driven, personalised and affordable care fragmented systems thwart the insight institutional building that is designed for that supports the independence, dignity and prediction that could drive better infection control. John Galvin and Adam and quality-of-life of people both in early interventions; tools to learn from the Hillier’s chapter looking at relocation their own homes and in supported care data will be an incredibly important part explains the UK’s struggle to create environments. Its work will be publicly of the future of care, as Rachael, Max and retirement housing, and Tom Lord shows available – anyone interested in delivering Andrew all show. how Inspired Villages, which is owned by better care can access it. At the heart of Legal & General, is leading the creation of Lastly, there is the issue of demand for the ACRC project led by Professor Bruce retirement communities in the UK. retirement housing: as Adam and John, Guthrie is the recognition that care needs and Tom, show, the UK is only building Longer life is something to be celebrated to be about serving the needs of people 7,000 houses designed for older people – – perhaps humanity’s greatest in later life, recognising the variation for a population of 12 million.4 The future achievement in the last hundred years. in how different people age and their of housing and homes will be at the heart But longer lives also need to be better ability to achieve what matters to them of how adult social care is provided, lives – hence the importance of better physically, mentally and socially. which is why Legal & General has care for our most vulnerable older people. Building a system that can improve donated £5m to Newcastle to pioneer I hope this paper sets out some of the outcomes for older people is the work new post-COVID approaches to elderly practical steps being taken. of our whole society, including our businesses. The UK Grand Challenge on the Ageing Society seeks to: “Ensure The ACRC – why we should care for those in later life that people can enjoy at least 5 extra healthy, independent years of life by 2035, while narrowing the gap between the experience of the richest and poorest.” Earlier this year Legal & General was chosen by UK Research and Innovation (UKRI) to deploy £6 million of grant pectrum o hea th an unction funding to early stage companies that en a e ngle r a e l ng er all a e l le l ng er n n are making a difference in healthy ageing. n n re n e ne er r en e le n era ng The UK Grand Challenge on Artificial re n e ne arge rea en rea en l le n n g e en e ngle n n n er nne r a a r e n l g Intelligence and Data is also particularly e en e a a an e n l g e nee a ne a r a a l r are e er n e r n al r an e re eren e an al e
4 Elderly Accomodation Counsel Caring for Britain Journeys through care What happened when I first needed help?
Marguerite and Ken’s story
Marguerite (75) and Ken (80) have been “Ken was in hospital for two months While Marguerite wants to remain living married for some 40 years, and while before they felt able to discharge him, independently for as long as possible in Marguerite has some mobility problems, and as we don’t have sufficient savings to her own home, she is realistic enough the couple had been managing to live be expected to pay for our own care, the to know that at some point she may independently in their own home until choice of care homes was down to the need to move into a care setting. “One Ken fell ill and had to go into hospital. Local Authority – although I did request of the great things about the home Ken they select one close to our home. I is in is that they offer accommodation “While he had been showing signs of have to say that the one he is now in has for couples. memory loss and forgetfulness before been excellent, the staff are really caring then, the doctors had not diagnosed “It’s been a very upsetting experience,” and cheerful, and I have absolutely no dementia, says Marguerite, “even though concludes Marguerite, “as I really miss complaints about the level of care they I felt fairly sure that was what it was. my husband being here with me. I never are providing. But after the ‘turn’ that he had, it was imagined we’d ever be apart. And if I obvious that this was now full-blown “It’s the one that my neighbour’s husband could have cared for him myself I would dementia, and while he was usually able went to, so I did know a little about it, and have done – but in lots of ways the to recognise me, it was plain that he was it has a good CQC rating - which is also decision was taken out of my hands. probably not going to get better. He was very reassuring.” I can see him regularly and I know also suffering double incontinence.” he is happy there - and that means After her last fall, Marguerite was able everything to me.” “My own situation was also made worse to return to her own home from hospital by a series of falls, I think the result of because the couple had previously stress, which put me in hospital at the invested in some home adaptations such same time. Until then we had pretty much as a stair lift and grab rails throughout looked after each other, but now some the house and into the garden. “…we had pretty much difficult decisions needed to be made.” “Being able to access the garden was looked after each While Marguerite had an LPA giving her one of the most important things for other, but now some control of the couple’s finances, there me,” she says, “and I spend part of my was not one in place for Ken’s health Attendance Allowance on a gardener, difficult decisions and welfare, so the decision on what with a cleaner also coming in to help with needed to be made.” happened next to Ken was not fully in the housework.” her control. Legal & General 17 Caring for Britain Journeys through care Setting up your own care ecosystem
Andrew Parfery, CEO Care Sourcer
In 2016 I ran my own care company and although the business was successfully Andrew Parfery delivering good care for older people, I could see that there were big gaps in the Co-founder and CEO of system. Older people were, at the time, frequently trapped in hospital beds while Edinburgh based Care Sourcer since January 2016 over-worked local authorities tried to organise a care package or a care home. I saw the damage this was doing; seven days waiting in hospital can cut a person’s muscle strength by 10%.5 I also saw the impact that this had on patients’ families, Care Sourcer who often tried to figure out care support but were confounded by a system that was confusing, disjointed, and over-worked. caresourcer.com
I teamed up with another Andrew, Seven days waiting – she’s only 65, she’s perfectly mobile McGinley, who also ran a care company and healthy – but she’s been shielding, and saw the same issues I did. We in hospital can cut she’s probably 20 years away from were both under 40 and we were used a person’s muscle needing care, but she’s experienced being to running our lives on our phones. vulnerable and having to rely on other It seemed incredible that the way we strength by 10% people – she doesn’t like it, it’s a loss cared for our parents, older relatives, and of independence. As a consequence of friends was run on paper. Put simply, What we have seen during the COVID-19 people have become much back in 2016 there was no way that a coronavirus lockdown is that people more aware of the different stages that family seeking care for a relative could who have never needed to receive care you move through in life, and they have type their needs into some software that have had to be isolated or supported seen that if you want to preserve your would match their needs with care that by their family members through this independence, and not be admitted to was available locally. If Rightmove could crisis. The coronavirus pandemic has care, you need to be proactive in planning do it for houses, Amazon for almost pushed awareness of the care system for that. anything, and the banks for our money, to the top of the public’s priorities. For Before the coronavirus crisis, it seemed why wasn’t there a website to help people millions of people, lockdown has meant that people felt that they didn’t want to organise care for their loved ones? experiencing what it can be like to be an talk to older generations about future older person. The reality is that, for some This is where Care Sourcer came from; care and about the future of the family people, when they reach a certain level it does what it says – anyone in the UK home. It was almost a taboo subject, of need, their lives can feel like lockdown. can register their details and then search because people didn’t want to talk That is why some older people get lonely for the care they need. The business has about something that encroached on and can become isolated, because they grown, we have added a care concierge inheritance or power of attorney because don’t physically have the ability to get out service to help people, we’ve also hired it was an uncomfortable subject, and and about. experts to help our users when they naturally as a human, why would you need to have a conversation, and we’ve Take my mum for instance, she has want to talk about a worse phase of your attracted investment to keep growing. asthma, she has some heart problems life that’s going to come?
5 National Audit of Intermediate Care Summary Report 2014, p 5 Legal & General 19
If Rightmove could do it for houses, Amazon for almost anything, and the banks for our money, why wasn’t there a website to help people organise care for their loved ones?”
would say – as happens with pensions – “no, no, it’s my money, I’m going to decide what I spend it on – I’m going to spend it on this piece of technology that stops me going into a care home, or I’m going to spend it on this care home rather than the one you want me to take”. So, if consumers have choice and control through a marketplace, they will drive up the quality of care and pay what they deem is right. People spending their own money, and making their own plan, will access A care ecosystem is a whole collection services earlier. If they go and access the of different actions, often supplied by service via a local authority today, they For millions of people, different people, that come together to will only be allowed to get that paid-for achieve the person-in-need’s objectives. service when there is a really high level lockdown has meant For example, for a person in their early of need. It’s too late by then – if they had experiencing what it seventies who has a fall, their objective been able to build their ecosystem the is more than likely to be recovery and way they wanted to, and perhaps they can be like to be an back to independent life. This needs would have accessed services earlier, older person.” some temporary changes to daily life, that would have helped to maintain their maybe some help with getting up and independence more - it would delay the dressed, maybe also some rehabilitation point at which they would need the local People are now talking, though. At Care authority paid-for service. The current Sourcer, we are seeing evidence that and some exercises. More than likely a family member, or more, will be able to system doesn’t allow people, or even tell many more people are now considering people, that they can do that. their own future care needs and starting help with travel and cooking. The point to figure out their own household-level is that a choreographed set of activities Back to my mum, and to the families I care ecosystems. and tasks needs to take place to help the saw struggling with the system, I would person who fell – that’s what we mean by say that there is a lot that can be done As families move from the conversation an ecosystem. under the current system. I, and my about care and planning, to decisions and Funding is also a key part of creating your whole team in Edinburgh, are proud of actions; this is where our vision for Care the power that Care Sourcer is putting Sourcer fits. Without a system like Care own care ecosystem. In the future, we would like to see a government-backed into the hands of those people, and their Sourcer it is very difficult for families to friends and families, who need care to create a care ecosystem for their relative; savings scheme, like the auto-enrolment pension scheme, where people can save help preserve what they value. A system even if the right kind of care is available like ours is making it more possible for from a supplier two miles down the road, up a contribution to their care. If we all saved through our lives until it came to families to create their own ecosystem, without the technology to join things tailored to what works for them. up, you just wouldn’t be able to find it. the decision point I think that people Caring for Britain Journeys through care Phyllis and Peter’s story
Peter had a stroke back in 2016 and has suffered from quite poor health ever since. He now also has the early stages of dementia. After 61 years of marriage, he and his wife Phyllis are devoted to each other; and Phyllis, although now in her early 80s, cares for Peter almost singlehandedly.
Peter’s story is fairly typical of many stair lift to get me downstairs, and a who understand our situation and we stroke victims – leading a very active life chair lift which helps me into a sitting can exchange ideas and information.” right up until the point that he abruptly position - I spend my time mostly either The charity also runs a befriending lost the use of parts of his body. “I was in bed or in my chair in the front room. service, and after three months when doing marathons right up until 1991,” he But I have a wheelchair and Phyllis also they could only connect by telephone, says, “and in under four hours. Then, one takes me out in that. We can even catch their assigned contact now comes to day, out of the blue, I tried to stand up a bus to get us to a few other places too.” chat to them in their garden. and found it really difficult. The couple also had a ramp installed “We went to hospital, but never got to see to get into and out of their front garden, a doctor. The nurse who saw me sent me and all of these adaptations were paid home. I was soon back in again having for by the couple themselves. “The I’ve even learned to taken a turn for the worse and a CT scan Council did help with installing grab rails,” showed that a part of my brain had died. says Phyllis. ‘Zoom’!” says Phyllis I lost the use of my legs.” proudly.” From then on, their lives were focused on giving Peter some normality in his life, Peter spent twelve years in the RAF as a and despite the fact that Phyllis was then Phyllis does almost flight simulator engineer before working in her late 70s, she was resolved that her everything,” says Peter, in British Aerospace, and so he also husband was staying with her. “I’m still fit receives calls and visits from volunteers and healthy,” she says defiantly. “He’s not “gets me out of bed, in the Royal Air Forces Association. All of going to go into a care home.” changes my catheters these contacts with the outside world are really important to the couple, especially “Phyllis does almost everything,” says and clothes, and looks as Peter now has early stage dementia. Peter, “gets me out of bed, changes my after the home too – all catheters and clothes, and looks after Family visits are also an important part the home too – all except when our son except when our son is of their lives, and while this hasn’t been is about and he helps too.” about and he helps too.” possible during the crisis, things are starting to get back to normal. “I’ve even “We did have a carer to begin with,” says learned to ‘Zoom’!” says Phyllis proudly. Phyllis. “But they could only come at One of their important sources of help certain times and only for a short time. has been the Bristol After Stroke charity, If the situation for either of them If that didn’t fit in with him needing to go which helps local people and their changes, they may have to think again. to the loo, for instance, it wasn’t any real families as they try to get their lives back But for now, Phyllis is determined to keep help to be honest.” to normal after they have been affected her husband where both of them are by stroke. “We really enjoy going to the happiest: in their own home. “The first thing we had to do was adapt after-stroke café locally,” says Peter, the house,” adds Peter. “We bought a “because we can talk to other people Legal & General 21 Caring for Britain Journeys through care
Emily Holzhausen OBE is the Director of Policy and Giving up Public Affairs for Carers UK.
Carers UK work to carersuk.org
At Carers UK, we would like planning- provide care to-care to be as normal as planning a pension. Planning for future needs is difficult and can raise complex infra- Emily Holzhausen MBE, family issues. Without a plan, most 18 Carers UK people are not prepared for caring. There are really important, but simple, things that people should do early, or if UK care relies on millions of people provide care are becoming ever stronger; they become a carer, to help resilience who provide unpaid care to disabled, UK companies could save up to £4.8 and minimise the negative impacts of ill, or older relatives and friends. The billion a year in unplanned absences, caring. There are financial considerations numbers tell the story. Pre-COVID-19 and a further £3.4 billion in improved such as pension contributions and our polling suggested that there were employee retention by adopting flexible benefits. There are legal issues such as working policies to support those with around 7.7 million carers across the UK, putting in place powers of attorney; doing caring responsibilities.13 ‘Employers for this either for yourself or for your family with around five million juggling work Carers’, run by Carers UK, shares good is much less complex if done when there 6 and care. Our new estimates show that practice and new learning.14 is a less acute need. The point at which there could be as many as 13.6 million people become carers can be a moment carers, including 4.5 million covid- of extreme stress for a family; it could carers - 2.8 million of whom work.7 happen overnight if a relative has a stroke The value of their care, at £140 billion Half of all women will or more slowly over time for conditions is about what we spend in a year on have provided unpaid like dementia. Having a plan already the NHS.8 in place can actually help families to care by the time they navigate these complicated and difficult Most of us (around 65% of all adults) reach 46.” circumstances. will provide unpaid care at some point in our lives.9 Half of all women will have Whilst caring can be rewarding, it can provided unpaid care by the time they also have negative impacts on carers’ reach 46, and by 57 for men, which health and wellbeing. Carers are twice In the 2 years pre- makes care a workplace issue.10 For as likely to be in poor health if they are some, juggling caring and work becomes COVID-19, almost 650 providing substantial care, and a majority impossible; in the 2 years pre-COVID-19, of carers say it has impacted on their people a day gave up almost 650 people a day gave up work mental and physical ill health.15 work early.” early to provide unpaid care (totalling 468,000).11 Some employers do see the Even though caring is part of millions impact of caring on employee wellbeing of people’s lives right now, many people Carers who have talked to their employer and are acting on it.12 The business do not recognise themselves as carers say that working flexibly has made a benefits of supporting employees who or feel that they know someone who positive difference to their health and is a carer. Half of carers took over a wellbeing, and for some, has meant year to identify themselves as such,16 they could continue working. Workplace and amongst the general public 51% support does not only have to start with Our new estimates of people say they do not have a family your employer, it can be as simple as member or a friend who is providing care, supporting your colleagues who are show that there could even though one in seven people were providing care. Several studies show likely to be caring at the time.17 that a supportive working environment be as many as 13.6 makes a real difference to balancing work million carers.” and care.
6 Carers Week 2019 research, Carers UK/YouGov polling February 2019 7 Carers Week 2019 research, Carers UK/YouGov polling February 2019 10 Ibid 8 The Carers’ Covenant, Ben Glover, Demos and Legal & General, 2018, p 6 11 Juggling Work and Unpaid Care, Carers UK, January 2019 9 Will I Care?, Carers UK, November 2019 12 Employers for Carers, Carers UK, April 2020 Legal & General 23
As important as workplace help is, there feel very alone on their caring journey. It are additional kinds of support that is our responsibility to make sure that we carers should consider. Technological Several studies show all play our part in making sure that we support and connections have been are as prepared for caring as we can be. show to make a difference for families that a supportive Whatever we can do personally to plan and can offer peace of mind. It might working environment for care, we also need Government to be an off-the-shelf video doorbell, more play its part. Clear and assured funding specialist monitoring technology or an makes a real difference from Government for social care will app that keeps everything in one place to balancing work help us all to prepare for and plan for like Jointly. Finally, new carers should find and care.” care as well as helping millions to juggle out what care and support is available work and care. Employers have said that locally, including talking to your GP and good care for employees’ families is just the GP of the person you are caring for, It’s important not to underestimate how as important as good health services in and specifically asking to be identified as emotionally challenging it is to worry supporting staff wellbeing. Good quality a carer. This can help link into different about another person’s welfare and care should be seen in exactly the same types of assistance including free support needs. Some people find that way that childcare is regarded as being flu jabs. talking and sharing helps. Most people, central to people’s ability to work. With though, say that – despite there being our ageing population there is increasing millions of people caring everyday - they urgency for this to happen.
16 www.carersuk.org/for-professionals/policy/policy-library/missing-out-the- 13 Estimate provided by Centrica, a founder member of ‘Employers for Carers’ identification-challenge, Carers UK, 2016 14 www.employersforcarers.org/ 17 Prepared to Care, Carers Week, 2013 15 Facts about Carers, 2019 18 Making Connections, Getting Support, Carers UK on Carers Rights Day, 2017 Caring for Britain Journeys through care Using your home to help with your care
Max Parmentier, CEO Birdie Care
The ideas behind Birdie Care have been with me for nearly twenty years. As Max Parmentier a teenager, I saw first-hand the difficulty and sadness that came with making CEO of London based Birdie Care since choices about the care needs of an older and much-loved family member. July 2017. My grandfather was once a happy, playful, strong man; everything a grandfather should be to a teenager. However, he lived with Parkinson’s disease and as his health became poorer my family was faced with the big question: how do we Birdie Care balance independence with the right kind of safety and care? It became clear that birdie.care living in his own home was no longer possible and, so, he moved to a care home that was equipped to support residents with complex medical needs. However safe his new environment was, he was not happy there and I found seeing him like this to be increasingly distressing. Ideal Care We use a concept of ‘ideal care’, designed to support the physical independence Setting up Birdie care being delivered. Birdie Care operates of an older adult for much longer. in-home care and we provide a range of What we see frequently is a ‘life curve’, It is with these memories that I am technologies, software, digital products whereby an older adult experiences a building a new way of delivering care, and hardware, connecting devices in the sudden and rapid decline in their level called Birdie. We launched in 2017 homes of the elderly. of independence, leaving them unable and Birdie is now a team of 58 brilliant We think that delivering the best to do as many Activities of Daily Living social entrepreneurs with health, clinical, outcomes for older adults needs a much (ADL). The decline is interesting because product, tech, and customer service more tailored, proactive and coordinated it can happen really fast, and then it background. system of care at home, where the older stabilises at a high level of dependency. We want to see care that enables our adult is at the centre of the picture. There are a few reasons for that; it could older generations to live longer, in good We want the whole care community to be more chronic diseases, or more health and happy in their own homes, coordinate better; to anticipate the issues around acute medical issues. However, surrounded by their families and friends. and flag them in real time. there is evidence to show that if you At Birdie, we focus on the quality of the organise care better - and that means coordination, personalisation, real time, proactive instead of reactive - you can support physical independence for a much longer period.
We have a team of GPs working on digitalisation of paperwork Legal & General 25
Understanding what Adapting your home Identifying accelerates a decline It is crucial to say that care support infection flags means more than addressing just the in health medical and personal needs of an older Identifying infection flags is an example adult, it’s not only ‘human being care’, of how planned monitoring can alert At Birdie, we look at what factors could but can also be refurbishing the house, carers to a potential issue. For example, accelerate a person’s decline, including: using some technology such as motion if Birdie receives (through motion missed medication; falls; infections sensors, perhaps community services, sensors) data showing that Mrs Smith and, lastly, indications of depressive and potentially some physio. Planning is going up into the bathroom frequently, behaviour. What can make the situation care much more realistically, and, using wandering at night and not sleeping very more difficult is that, on top of the medically backed evidence, allows the well, there’s a very high likelihood that accelerating factors, the services whole care team to really focus on it’s a urinary tract infection. Identifying designed to provide support are literally what interventions are most efficient the likelihood of an infection at an earlier not coordinated. So, my team said “let’s at helping an older adult to remain as stage means that Mrs Smith’s team can, build technology to coordinate the care healthy and independent as possible. after a medical diagnosis, treat her within systems” and we now have apps and 24 hours instead of waiting 3 weeks and web apps that care professionals are Our aim, following the planning phase, rushing to the hospital. Another common using instead of paperwork, and we is to keep our older adults safe, 24/7. issue is mis-medication, which often are trying to extend this to community At the delivery stage, our apps and web results in hospital admission but could nurses and GPs to help them access, apps can intervene. For example, we also be better managed by using technology plan, and deliver the care better. have motion sensors that we place in the for delivery and monitoring We have a team of GPs working on house that connect to the system. The digitalisation of paperwork and in the interesting piece then is the last bit we There are plenty of ways which could, background we are building tools, do, we use all that data from the carers, eventually, lead to lower hospital which are clinically backed, to actually from the sensors, to really have a very admissions by 20 to 30%. When an older strengthen the quality of the overall high resolution picture of the older adult adult is admitted to hospital, she can assessment. at all times. lose a number of years of progress the moment she steps into that hospital Instead of recording generic We talk about Fitbit and so on, but for because she’s going to stay there too information, such as ‘Mrs Smith likes the care of older adults there are many long and she’s going to decline faster. tea or coffee and she has this kind of quick ways to identify issues and tackle condition’, we are working on building them early on. To be clear, we are not new ways of recording and processing diagnosing anything, but we can use our data to ensure that older adults’ system to inform carers and GPs of what progress and condition can be qualified could be going wrong. with a health metric. Following the setup phase, the health scoring can be used to drive more integrated planning of care, so whether a social worker, a home care We use a concept of ‘ideal care’, designed to worker, or a family member is using our software, they can each contribute to support the physical independence of an older planning what care is provided. adult for much longer. Caring for Britain Journeys through care
Informal and preventative care The big potential in home care is in preventative care, so that Mrs Smith doesn’t go to the hospital unless absolutely needed, and that is what we are working on. Informal carers (such as family and friends) are often the providers of preventative care, so Sample alerts and it makes perfect sense that they are triggers from Birdie’s included in the comprehensive planning Sample alerts and software process. There is an unpaid work force of triggers from Birdie’s 5 million informal care givers and if they software were to stop working, it is going to be care professionals stepping in.
Integrated healthcare At Birdie, we are aiming to create an integrated healthcare proposition. We have just hired a Chief Integrated Care Officer, who had worked at the Care Quality Commission, and has brought a wealth of strategy and knowledge with him. If we are to have a coordinated, preventative care approach, there must be a holistic view that integrates the budgets of health and care, and facilitates all of the stakeholders talking to each other. I am convinced that technology can really help to deliver a new system of care that is focussed on the goals of older people. We will get to that ambition, of expanding lives and improving conditions for older adults, when a GP is talking to a care worker, and a community nurse, and a social worker, and community services – that is why we are building Birdie. Legal & General 27 Sandy & David’s story
Sandy and David are married and in their 70s: Sandy was a social worker and then moved from ward to ward and David a teacher prior to retirement. Sandy’s father moved to the USA some his physical condition continued to years ago but always retained UK citizenship; so when he was diagnosed with deteriorate,” says David. “The residential Alzheimer’s in 2017 and finding it increasingly difficult to cope with everyday life, home he was in could not provide the increased nursing care he now needed, the natural decision was to bring him back to their home in the UK and care for so that meant finding somewhere him there. else. Again, we relied on friends’ recommendations. Because he was now entitled to Funded Nursing Care, that just “He lived with us for about a year,” says “In some ways that made our decision- about made the extra cost affordable.” Sandy, “and that worked well until his making process easier as we didn’t dementia deteriorated and we were finding need to go through the local authority,” “The matron of the nursing home was it more and more difficult to keep him says David. “We simply needed to find crucial in getting him out of hospital, says safe. He would wander around in the night a suitable home within his budget. We Sandy. “She went into the hospital and and really needed monitoring 24 hours a relied heavily for recommendations cut through all the red tape of getting him day. He was also suffering from restricted from local friends and visited quite a few discharged – otherwise who knows how mobility because of arthritis, and it was before deciding.” long it would have taken. impossible to make all the adaptations to our home to help him get around. “My sister and I did a lot of research online about what to do next and the Although they had established Powers of Attorney, conclusion was for him to go into some the couple also found themselves occasionally not form of residential care home locally that would be able to deal with his condition consulted about major decisions – such as whether and we could make regular visits. We he should or should not go into hospital after he downloaded checklists from charities like Age UK and Dementia UK which had several falls.” gave us lots of really helpful pointers on what questions to ask when we visited “The one we chose was close by, adds “Sadly, he wasn’t in the nursing home potential care homes.” Sandy, “so we could easily make visits, for long – just six days – before he and it was modern and perfectly nice. But succumbed to a chest infection and An initial care needs assessment when they said: ‘This is your home now’, passed away. But they did look after him organised though the local authority it’s only half true. Yes, you can personalise well during that short time. came up with two weeks’ respite per your room, but everything runs by rotas. year for the couple and several hours a “The whole process of finding out what There were some lovely carers, but - week of care while they sorted out a care you need to know at such a stressful really - it’s an institution. We also had a home; the financial means assessment time is fraught,” Sandy concludes. “You’re few problems like his clothes being lost which eventually followed determined trying to make huge decisions on behalf or finding him wearing someone else’s that while Sandy’s father had no real of someone else that will affect their trousers. That’s upsetting.” savings or assets, because he had a wellbeing and their quality of life in their reasonable income from his pensions he Although they had established Powers last years. It’s also incredibly hard work, would be a “self-funder” for future care. of Attorney, the couple also found very tiring, and emotionally draining.” themselves occasionally not consulted Moreover, he was refused attendance “And we were lucky… at least we had the about major decisions – such as whether allowance (despite our pursuing it to a financial ability to make choices in where he should or should not go into hospital legal appeal and contacting their MP) Dad should go. Not everyone can do that.” after he had several falls. because he had not lived in the UK for two out of the last three years. “While he was in hospital the last time, he contracted norovirus and was Caring for Britain Journeys through care What about
Tony Müdd Divisional Director, our family Development & Technical Consultancy at St. James’s Place Wealth Management since 1993 finances? sjp.co.uk
Tony Müdd, St James’s Place
On May 13th, 1948, Clement Attlee’s In the 75 years since, the basic framework family’s finances and it is hard to make a Labour government passed The has not changed and still, many people good plan in the eye of a storm. think that, like the NHS, care will be free National Assistance Act, introducing Because of the way the care system is to use and funded from taxes. It is often a comprehensive system of social configured, a good plan – a plan that shocked and upset family members, security for ‘the welfare of disabled, creates an affordable care ecosystem supporting their loved on through a – has to include savings, pensions, sick, aged and other persons’. The health emergency, who find themselves income and assets, most often houses. NHS, also born in 1948, was ‘free at confronting a financial crisis as they Nearly two million people ask for care the point of use’, whereas much of discover the realities of the system. over the course of a year and only a tiny the welfare state was means-tested, as Sir William Beveridge had envisaged.19 The NAA placed a duty on Local The vast majority of the two million people Authorities to provide residential accommodation for persons ‘who who ask for care every year will only discover by reason of age, infirmity or any their new needs during a rapid-onset health other circumstances are in need and family crisis.” of care and attention which is not otherwise available to them’. From Since 1999, 330,000 older people have fraction of them will seek financial advice. the beginning of our modern social had to sell the place they call home to pay Even fewer families will have sat down security system and NHS, care for older for help with things like washing, getting together during the ‘good years’ and people has never been universal or dressed and going to the toilet.20 As care made a plan to use in a crisis. free, but it has always been provided by becomes more expensive and more Whatever the reformed care system people need it, costs will rise. For one in Local Authorities and means-tested. looks like, people are going to have to ten people, their care costs will exceed make some form of contribution. Many £100,000 – labelled as ‘catastrophic ideas have been floated, the most recent costs’, by the Dilnot Review. of which is a kind of auto-enrolment style The vast majority of the 1.3 million older system where people older than 40 years people who ask for care every year will of age could save towards a contribution only discover their new needs during to care, perhaps with insurers providing a rapid-onset health and family crisis. cover up to a certain level.21 If this During this very difficult time, people can system, or one like it, emerges from the find themselves making big decisions current decade-long process, then people about their home, their income and their will still need to integrate their care future. The financial decisions made in provision with their financial planning. these pressure-cooker moments can So what can be done to help today’s have long-term consequences for a generation of older people, whose care
19 The National Assistance Act, 1948 20 Independent Age, 2019 21 Over-40s in UK to pay more tax under plans to fix social care crisis, The Guardian, Denis Campbell, July 2020 Legal & General 29
£100,000+
For one in ten people, there are fewer than 500 advisers who their care costs will exceed £100,000 deal with care specifically - that’s one Dilnot Review adviser for every 2,600 people who request care.”
needs will be met by what is available support the upskilling of advisers in this today, to plan-ahead and build their own Advice and Care area, so we now require our advisers to care ecosystems? First, we need to make As things stand, the majority of people be members of SOLLA. sure that there are enough financial who start being cared for get no financial There is an important role for advised services professionals who can offer advice at all. If people run out of money financing and from my customers’ points specialist advice on all matters relating to (maybe because they didn’t get financial of view, a combination of innovation, care. I have worked with the team at The advice) while in private care, the transition regulation and advice could deliver better Society for Later Life Advisers for many to Local Authority provided care can be a plans, ready to be put into motion when years and I am pleased to say that their significant shock in their life. They could needed. And in the future, it may be that work is bearing fruit. Although we still be miles from their family in an unfamiliar new blended products could be designed need many more advisers certified in the and new environment at an exceptionally to offer a care financing package that finances of care, the trend is upward. vulnerable point in their lives. takes into account real longevity risk, As other contributors to this report have Where advice is used, it is almost always changes in people’s ability to carry out indicated, care in the twenty first century received at a crisis point, quite often ‘Activities of Daily Life’, and provide a will be built by people themselves. It is when family members understand that contribution to paying for care. clear that creating a care ecosystem their older relatives can no longer safely For real progress to be made, it is clear of their own will be the route many live independently. We, as a sector, need to me that there should be some form of people take to ensure their family, to find a way to have these conversations government-backed education so that and themselves, have more choice long before a family reaches a crisis. the general public understand that social and control. Resources will always be Part of the solution is to get more care is means tested. A concerted effort fundamental to any plan. advisers who specialise in long-term to raise public awareness, just as was care. As things stand, there are 1.3m In an ideal world it would be clear that done in the early days of auto-enrolled new requests for care each year and we the state provides for those in the workplace pensions, could help the public estimate that there are fewer than 500 greatest need and have the least ability to understand that they are more likely advisers who deal with care specifically to pay, but that, for everybody else, they (than they think they are) of needing care, - that’s one adviser for every 2,600 are responsible for making their own as well as spelling out that any support people who request care. The situation arrangements. We are likely to have a from the government is means-tested. is improving, and SOLLA is doing a great system that tries to achieve this, more job in this area, but there is more that Underpinned by a campaign to raise or less. needs to done. The whole sector needs to awareness of the reality of care, there is a consider whether the right kind and level real opportunity to show that people don’t of regulation is in place to encourage need to struggle through the financial more advisers to enter the market while complexities of care on their own – for Financial decisions protecting the consumer? For instance, many people, professional advice about a clear definition of what a care client is, financial options should be an important made in these pressure- could help to support the growth of this part of the care planning process. cooker moments can part of the advice market. Although great work has been done on vulnerability by have long-term the regulator, it doesn’t deal specifically consequences.” with care. We have taken our own path to Caring for Britain Journeys through care Brenda’s story
Brenda’s journey through care I am 66 and – until she passed away in 2018 aged 93 - was a long-distance carer for my Mum. As her only child it was down to me to organise her care: at the time I lived in London, she in Canterbury.
Mum was diagnosed with dementia at It was hard to get more home care with Mum owned her home and had some 87, although her memory was getting any companies I felt comfortable with capital, so I kept her house in order poor before then. I’d see her at least once because they had waiting lists. I looked at to stay over, and was lucky to have a a week and in between she managed ‘live in care’ but it was costly; at extra care deferred loan agreed by the council, so with the support of neighbours and (there was none available locally); and I did not have to sell until Mum died. friends: June was her “memory” and residential care for people with dementia. Charges were about £700 per week, and came to the house at least five times a the total at the end was over £100,000. In the assessment, residential care was week and got Mum’s pills and shopping. agreed as a trial for a month. I knew the One night she fell and broke her wrist, and We set up financial power of attorney home I’d chosen as Mum’s friend had as she used her arms with her ‘walker’ I and I sorted Mum’s bills. Between us, we lived there, we had visited, and it seemed got her a wheelchair. She became more managed well. nice. It was run by a charity and had and more quiet and reached a stage In 2013 – when Mum had the diagnosis a reasonable CQC assessment - and where she would hardly speak at all… - I took over all her affairs and we agreed a vacancy. but you knew she was happy if she blew a living will. a kiss. The staff really made the home She settled well and thought she was special and I am so grateful to them. Although Mum was coping I could see in her own home. It was an older style that she was not aware of the time of place, but felt homely and the staff were Mum died in her sleep on 25th November day and her memory was getting worse. good. We decided that she should be 2018. She had a bad chest every winter Her mobility was limited and she needed permanent and we set up a circle so she but this time she did not recover. I was a ‘walker’. She’d forget to take her pills. I had visitors at different times. sorry not to be with her in death, but so arranged a carer in the morning to ensure glad she died peacefully. I miss her a lot. she took her pills with me reminding her at night. This worked for a while until she kept losing the phone. I increased the She settled well and thought she was in her own care to twice a day. home. It was an older style place, but felt homely Mum then began falling, resulting in her going in and out of hospital. We brought and the staff were good. We decided that she her bed downstairs and arranged an OT should be permanent and we set up a circle so she assessment, so she had grab rails, toilet had visitors at different times.” aids and a perching stool. Attendance Allowance helped pay for her care. In April 2015 she fell again, and this The food was excellent, and as Mum time I knew in my heart that she could loved her meals this was a real positive. no longer go home. I researched all the The home had animals – two cats, a options – fortunately I work in housing dog, a rabbit and a cockerel - activities and care for older people - and asked arranged every day… and always tea for a care assessment. This was initially with cake with hot chocolate at night! I refused as Mum was a self-payer but would take her and June out for drives I insisted as it is her right to get one and into Canterbury so she could undertaken by the local authority. go to some shops and have tea and (of course) cakes. Legal & General 31
Photograph posed by models Caring for Britain Journeys through care Building the complete companion for anyone caring for a loved one
Rachael Crook, Lifted
I was 24 and studying in Oxford when Paper files So I quit my job and my 56-year-old mum, a senior civil When your loved one starts to change, co-founded Lifted servant living in Edinburgh, was that is a very disempowering moment. diagnosed with dementia. The doctor Being able to bring someone in, and Over the next few years, I thought a said to us at the time, “This is the keep in touch with that carer, is a way great deal about my experience, and diagnosis. She will probably die in of empowering a family when it feels that of my family, and how things could be improved. Could we use all those 8-10 years. There’s nothing we can do. like they’re losing control. I was really carefully written (and now filed away) I wouldn’t seek support as you might frustrated because soon my mum wasn’t able to communicate that she was ok. I notes to track and understand more meet people with more advanced didn’t know what was happening when about a person’s health deterioration, dementia and that will be upsetting”. I wasn’t there because the carers would and significantly, to learn more about As a family we tried to manage, but write their notes and then store them effective interventions? Could we use one day my mum left the cooker on in a paper file. That paper file would sit technology to show families the value and the fire brigade had to be called. on the table in Edinburgh and it would that Carers bring? Could new technology It was clear that Mum was not going never get used. From a transparency (and help to modernise the organisation of care? Could Carers get the respect they to be able to look after herself without an experience) point of view, it pushed deserve? So, after a few years passed, any support. There was no one to help us further away from her. The carers themselves were nice people, but they I left my full-time job and set about us, there was no guidance. We had a were under-trained and under-supported. building an organisation that could do really difficult journey trying to find The service cost four times my parents’ the things I had been thinking about. care. The Alzheimer’s Society helped mortgage payments, and from day one I I partnered with Zero 1, a Venture us a little but in the end we had to sort it could see it could be so much better. Builder, and my co-founder Sam Cohen, all ourselves. and we launched Lifted so that other people needing care, and their families, might not have to go through what my family experienced. Rachael Crook CEO of Lifted
My experience, and that of my family, Lifted caused me to start thinking about how liftedcare.com things could be improved.” Legal & General 33
I go and speak to each of the carers when they start with us and I tell them about my mum. I ask them to imagine that everyone they’re looking after is like my family.”
The tech system Building the Our ambition at Lifted is to lift lives by Lifted culture building the complete companion for anyone looking after a loved one. From Last year the Care Quality Commission the moment of diagnosis to the end wrote a glowing review of Lifted. This is of life, we want to make sure that no a big deal for an organisation like Lifted, one cares alone. Our strategy has three particularly as the CQC highlighted both stages. First, we are delivering support, the service and culture of Lifted. The guidance and community to families technology is great, and it is delivering before they need care. Second, we deliver improvements in care, but only when the Rachael with her Mum care that lifts and empowers families tech is allied with strong culture do we and Carers and, thirdly, we create and realise the kind of strong, long lasting maintain the working conditions that relationships between great carers and Carers deserve. families – the kind of service I wanted to find, but couldn’t find, for my Mum. Caring for Carers is as The need for our service is huge – the important to us as number of people that need home care Caring for Carers is as important to us as will double in the next 15 years, while the caring for families – this is the heart of Caring for families.” number of care home places per person our mission – so I go and speak to each dropped 10% in 2018. Meanwhile, 1 in 12 of the carers when they start with us and people are dropping out of the workforce I tell them about my Mum. I ask them to look after loved ones. They deserve to imagine that everyone they’re looking better. after is like my family. We directly employ our Carers and we will use our platform To deliver the kind of care we can to recruit, train, support and manage be proud of, we have built a ground- them. We are proud to be among the breaking ‘Care Management Platform’ less than 2% of care companies paying that transforms the care experience their hourly staff the real living wage. for everyone involved. For families, we Caring for our Carers is as important to restore joy by keeping them up to date us as Caring for families and of course with care and by delivering around- we pay for travel time. During lockdown the-clock support; and for Carers, we we doubled sick pay so that no one had provide rapid insight into how their to choose between keeping people safe clients are feeling plus instant reward and supporting their family. We use the and recognition. Our platform centralises data and feedback from our platform to data from all parts of our care ecosystem identify the strongest performing Carers to create and automate scheduling and and recognise them. alerts for our operational teams. Caring for Britain Journeys through care
So far, we have attracted ‘new’ people: we’ve got a couple of people with Masters in Public Health from University College London, including a fully-fledged doctor who came to work with us as a carer, another of our Carers is a jazz musician, she even composed a song for our clients.”
Talent matters What drives success? Impact I want Lifted to be an outstanding As we have grown, it has become clear to We are 18 months into the Lifted journey innovator, so we have hired people who me that there are some barriers to scaling and it is working; we have delivered a bring knowledge and talent from other up from start-up to mature organisation. workforce churn rate that is below the sectors of the economy and combine For example, there is a mismatch industry average, and exclusively 5 stars their experiences with the best people between the needs of innovative and Trustpilot reviews. We have raised over in the care sector. That magic works smaller companies and the existing £3 million in investment most recently together. For instance, Sam Cohen, our institutional care infrastructure. For in a round led by Fuel Ventures and our Chief Operating Officer, used to manage example, each Local Authority has its revenue is growing rapidly. Our new a staff of thousands of online estate own tendering process, and this can community, for people caring for a loved agents so he knows what it’s like to work place too large an administrative burden one, has gained hundreds of members in with lots of different people delivering a on smaller companies. There is also a a few weeks. We were crowned the UK’s service, and I bring my experience from case for the government to look at the Best Startup Home Care Service at the Government and the private sector. I infrastructure that already exists, like the HomeCare Awards 2020. used to be a Senior Advisor in the Prime CQC, or the Skills for Care, and consider In December, we opened up our app to Minister’s Implementation Unit and a how they can make those services more offer families the first personalised care consultant with McKinsey & Company. accessible for companies like ours. The guide to help families through the care other thing that holds us up is how long It is disappointing that fewer than 30% of journey. Now anyone can download the the Disclosure and Barring Service (DBS) carers think that people respect them as Lifted app by searching "Lifted App" in process takes to vet new staff. It is a professionals. We want this to change. the app store. We are developing our really important process but delays can To attract talent, we need to elevate the platform to digitally upskill and recognise hamper our agility. way people think of care; real change will care workers remotely and build out our not come unless we can get somebody There is also an important cost factor. AI capabilities to provide automated who was not thinking about becoming a Tight public sector budgets make it very coaching and assisted decision-making. carer, to become one. During lockdown, difficult for providers to deliver state And we are putting together new tools to over 50% of people looked after a loved funded care. Extremely tight margins help employers support their workforce one. There are millions of people who create a double whammy where the with caring responsibilities. are passionate about care but are put need for innovation is ever higher and the It’s not an easy set of problems to solve, off from becoming a carer because budget for delivering it is ever smaller. but we are so proud to be building a team of the pay and conditions. This must This must be addressed to deliver the as passionate about this mission as we change. We must build a culture that care that people deserve and to drive the are. We would love to hear from anyone puts carers at the core by showing that innovation the sector needs. looking for care for a loved one or is they are the most important people in our interested in ways to support their staff business. So far, we have attracted ‘new’ with caring responsibilities. people: we’ve got a couple of people with Masters in Public Health from University In five years’ time, we aim to have lifted College London, including a fully-fledged one million people, either through care doctor who came to work with us as By 2025, no one should directly, or through the support we a carer, another of our Carers is a jazz provide through our platform. By 2025, musician, she even composed a song for care alone.” no one will care alone. our clients. Ultimately, what drives us is focussing on what our families need. Legal & General 35 My Thursday: A day in Evelina’s life Working day, 06:00–19:30
This is the story of Evelina’s Thursday. Evelina is 24 years old and works for If you don’t want to be Lifted (the company co-founded by Rachael Crook) and is full of professional late, you have to leave enthusiasm following her recent promotion to a role with more managerial responsibilities. Evelina trained as a physiotherapist in Lithuania and came very early.” to the UK two years ago to be with her boyfriend. Alongside working as a professional carer, Evelina has been training in massage therapies that relate the home of her client: “After putting on to her earlier physio studies – she is just about to start a new course in Sports our personal protective equipment, we let Injury massage. She and her boyfriend share a flat in Hainault, at the eastern ourselves in, we go upstairs and prepare end of London Underground’s Central Line. everything for a full body wash, changing the pad and transferring her from the bed onto the chair”. Evelina is clear that, “If you don’t want to be late, you have because her new client has dementia, she to leave very early”, explains Evelina. To has requirements that are very different reach her first client at 08:30 in North from, say, her other clients who may have London, Evelina’s day starts at 06:00. a physical disability. By 07:00, she is on a tube train towards London, she changes to the Piccadilly “She is lovely, she recognises us and Line to head north, and then boards a knows that we will come in the next bus, and at 08:30 Evelina arrives at her morning… I think it is helping her daughter client’s home. Evelina uses the Lifted app as much as helping her. We provide all to see her journey details and plot her the personal care for her Mum so she route easily. [the daughter] can go back to work. She wants to know that her Mum is being It is the first time Evelina has worked looked after – by someone she can trust with today’s client; a lady with dementia every day – giving her food, personal who lives with her daughter. The client care and generally everything she needs”. is new to Lifted, “but when you go there Evelina is pleased at how the visit has a few visits a day you get to know the gone; she always asks her client and person. She used to have carers before; their family what they thought about the Evalina in her Lifted uniform we are not the first company to go there. I care service she provides, and makes think we are the third or fourth company. sure that she has explained the tasks she Her daughter has been trying to find completed during the visit, otherwise “it somebody who is better,” as Evelina would be a bit weird if you just came to diplomatically puts it. Evelina logs into assist on personal tasks”. At the moment, the Lifted app to read the notes from Evelina and her colleagues are not yesterday’s visit to make sure she is up preparing meals for the client but Evelina to date. has talked with the client’s daughter and believes that, “in the future she would like The client’s daughter is trying to find the us to prepare the meals”. She puts all the right care in place for her Mum, who lives details into the Lifted app so the client’s with a form of dementia. There is a pre- daughter can be up to date straight away arranged system for Evelina to access even if she is not at home. Caring for Britain Journeys through care
She is lovely, she recognises us and knows that we will come in the next morning… I think it is helping her daughter as much as helping her.”
The appointment is a “double up”, which Returning to the home of her first client It was lovely. Then I had to administer means that the client being cared for of the day, Evelina describes the different medication for her, prepare some tea and needs two carers. Evelina explains lunchtime routine: “The second visit [of then it was time to go”. why this is needed: “This means the the day] means another transfer for the With this appointment over at 16:00, appointment is for someone who is client, from her bed to the chair, in order Evelina is back on the bus heading to confined to bed and requires a transfer for the pad to be changed and the client visit the client she saw for breakfast from their bed to a chair, or vice versa”. can be washed”. Once the personal care and lunch. She puts on her personal is completed, Evelina and her colleague After her 08:30-09:30 appointment is protective equipment. This visit involves transfer their client to an armchair, have a finished, Evelina has a task that came the same care delivered in the morning, bit of a chat, and get her comfortable for with her recent promotion. Following again “doubling up” with Evelina’s Lifted the afternoon, so she can watch TV and a bus journey, Evelina begins a ‘spot colleague. Evelina describes the visit: “I read her favourite magazines. The chat check’ at 10:30 to assess how a Lifted did all the personal care that I did in the offers Evelina an opportunity to ask about colleague is delivering care for another morning with my colleague. So it was her client’s morning, what she planned client – whom Evelina knows very well. transferring her back to bed, giving her a to eat for the day and how she is feeling. Evelina describes the purpose and full body wash, changing her pad, making She completed the wellness data in the outcome of that day’s spot check; “I her comfortable, tidying up afterwards, Lifted app so the whole team can see spent an hour checking the tasks that he preparing everything for the night”. how the client is feeling. [Evelina’s Lifted colleague] was doing… I At 18:00, Evelina is finished working and had to comment on how he was working, At 14:00 it is time to head to another care heads for the bus, then the tube, to get reinforcing our operating procedures and client and the travel time allows Evelina to home to the flat she shares with her cheer him on a bit. He is doing everything call her Mum in Lithuania and catch up. partner in Hainault for about 19:30. right but, like everyone, he benefits from a The 15:00 appointment is with another bit of friendly support”. After a half hour for her dinner, Evelina new client. It is only Evelina’s second gave this interview. After completing the spot-check, at 11.30 visit to her so she makes sure she has Evelina talked with the team preparing time to read the care plan and the client’s this research report and then took a call profile in the Lifted app. She is also from Lifted HQ to ask her to return to her careful to wear fresh personal protective first client of the day for a lunchtime visit, equipment. The new client’s daughter between 13:00 and 14:00. She checks the has been staying with her Mum but only Lifted app to find out where to go. Before until the following day, so there was a hopping onto the bus, Evelina makes lot of planning needed. The client has some time to eat a sandwich for lunch. dementia “but it is not as advanced as other clients so you can have a great chat and talk about memories and everything. Legal & General 37
Marion and Jack’s story
Until late 2019, Marion (82) and Jack (87) had enjoyed relatively good health and were perfectly able to live in their own homes without domiciliary support. This is despite Jack surviving cancer and being the country’s oldest surviving kidney transplant recipient.
Marion being hit by a car sparked a chain move to longer term. Ideally, they would “Our experience has shown just how of events which has changed everyone’s move to “independent living” style difficult the journey can be for anyone lives, and shown some of the “gaps in accommodation, but none that the family trying to move from hospital back to the system” that can prevent people could identify locally would have allowed anything like a normal life,” says Mark. from living their lives as independently as Marion full accessibility for facilities such “In lots of ways we’ve been lucky because possible for as long as possible. as the shower using a wheelchair. we did at least have the insurers to cover many of the costs. Because Marion and Marion, the innocent party in the Jack’s savings are just above the Local accident, was rushed to hospital where Authority threshold, they were told in their her left leg was amputated and her Mark, who is Marion assessment that they would have had to right hip pinned. During her stay, she shoulder these themselves. contracted Covid-19, but still managed to and Jack’s son in law, make a sufficient recovery for her to be has taken on the role “They would certainly have had to pay discharged into a smaller hospital nearby for their later physio sessions had these which provides specialist physiotherapy of “Litigation friend”. been available. services. Setting up Lasting “The fact that the much-needed physio From there she moved to a privately-run Power of Attorneys has for Marion wasn’t available for three rehabilitation unit for a two-week stay, her also been set in motion.” months after her discharge again shows bills paid for by the insurers. After that up a flaw in the system: physio at an early point, it was agreed that her physio costs stage is vital if someone is to make the They do not want to move into a were to be paid for by the State – except fullest possible recovery. care home, so they are now trying that no physio services were available to identify suitable supported living “We were also dismayed to find that for the next three months, and indeed accommodation. The family have so many ‘later-living developments’ this has never materialised because the identified several options that would suit were totally unsuitable for anyone in a lockdown subsequently prevented them Marion and Jack, but it will be down to wheelchair – surely that should be a from being provided. the insurers to decide how much they are mandatory part of their design to enable Marion is still in the rehabilitation unit prepared to pay. people to carry on living there for as long – together with Jack - and the couple as possible. Mark, who is Marion and Jack’s son in are awaiting their next move. In an law, has taken on the role of “Litigation “And finally, it was an uphill struggle to ideal world this would be back to her friend” – liaising between the couple and identify suitable accommodation that own home, but it would be unsuitable the solicitors throughout the process. would have met their needs. It’s taken all for anyone using a wheelchair to Setting up Lasting Power of Attorneys of us a huge amount of time and effort move about. has also been set in motion to ensure to get this far - and Marion and Jack still All of their five children and their partners that if their decision-making abilities aren’t at the end of their care journey.” have searched online to try and find become impaired, the family can make suitable accommodation for them to decisions on their behalf. Caring for Britain Journeys through care Safe and simple homecare tech
Christopher McCann, Current Health
Monitoring, itself, is not the solution to Future healthcare Monitoring and better health and care at home. Rather, Current Health’s mission is to predict quality of life monitoring allows the early identification illness and intervene so that every human of illness and the ability to pre-emptively has the chance of a longer, healthier life. Current Health provides the most treat. Thus, as we increase our ability As we all know, our population is ageing. sophisticated, continuous view of to monitor health at home and as we As a result, we’re experiencing more patient health at home available. This increase the depth and span of that chronic disease. These diseases should includes 24/7, passive monitoring of vital data, then we increase the opportunity to be managed and treated differently to how signs, like a tiny ICU monitor, including intervene and treat early – maximizing we’ve delivered healthcare in the past. respiration rate, oxygen saturation, lifespan and quality of that life span. Our There must be greater focus on preventive, mobility and step counts, pulse rate focus as a society should be on how we proactive health and care if we are to and body temperature. This means that treat preventively, not reactively. continue delivering high-quality, universally vital sign readings are taken throughout Over the coming months and years, we available and accessible healthcare. the day without any action from the patient required. expect the importance of continuous and Current Health delivers automated 24/7 passive monitoring to grow. The number monitoring of patient health in their own The solution also wirelessly integrates of parameters it is possible to monitor home and without confining them to a with top device partners, including will grow. It will become ubiquitous and hospital, rehab or assisted living facility. Dexcom, and allows collection of widely accepted that our health will be We do this wirelessly and passively, symptoms and SDOH. These capabilities monitored 24/7/365. invisibly fitting into the patients home, provide a complete holistic view of avoiding “clinicalizing” the patient’s home. a patient’s health, without disrupting their life. Our focus is on using this stream of health data to predict illness onset and enable early, preventive treatment. We are developing a range of software-driven therapeutics, for diseases such as heart failure and COPD that enable innovative, new care models to be delivered, centered around early treatment in the home, improved patient quality of life and lifespan and prevention of acute hospitalizations and Emergency Department visits. We have already seen these care models deliver greatly improved benefits, including a near-90% reduction in hospitalizations in one elderly population. Legal & General 39
Chris McCann CEO of Current Health since 2015 These care models deliver greatly improved . benefits, including a near-90% reduction in
hospitalisations in one elderly population.” Current Health
currenthealth.com
Artificial Intelligence Using wearable Collaboration with and machine learning technology other technology There are 67 million people in the UK. To As with anything, it is about Interoperability is critical. Health and care monitor the health of every one of them understanding the personal motivations is complicated. There are many different would require a huge number of doctors, to engage with a service like Current systems involved and many different nurses and healthcare professionals. Health. Life is the ultimate human right, teams of healthcare professionals across Instead, we can deploy machine but the quality of that life is just as primary and secondary care. As such, its learning to identify and predict the important. No one wants to spend time in key that systems interoperate with other onset of disease. We can then focus the hospital. All of us want to live quality, long systems and are globally accessible. For healthcare professionals we have on the and healthy lives. Current Health is a part preventive treatment to be successful, much smaller number of patients who of the overall healthcare delivery circle, systems cannot be siloed to one group. need their time, attention and skill. of which the patient and their healthcare For example, Current Health already professional is at the centre. It is critical The software-driven therapeutics we are integrates with a number of electronic that healthcare professionals adequately developing, tailored to specific diseases, health records, as well as patient held explain to the patient why they are are focused on combining the massive electronic health records like Patients receiving Current Health, the benefits bank of human health data we have Know Best. it can bring to their health and that it is captured, the stream of data from that being used to keep them safe and well at specific patient and the world’s existing home. When done correctly, this results in clinical knowledge, to identify those who patient adherence above 90%. need treatment and help physicians, nurses and healthcare professionals The second key part is simplicity. At Life is the ultimate deliver that treatment preventively Current Health, the very first metric human right, but the and early. we consider above all else is patient adherence. In every product improvement, quality of that life is we first consider patient adherence and just as important.” how it will be impacted. Solutions in the home must be simple for the patient and Vital sign readings they must be easy to use. We focus on are taken throughout making things work, right out of the box, the day without any with zero configuration and a setup that’s less than a couple of minutes. action from the patient required.” Caring for Britain Journeys through care
Wider uptake of Where does Driving early technology wearables best interventions A key barrier is that the patients who The US and some European countries, Current Health’s solution is unique in that most need access are the hardest to such as Sweden, are more mature than our continuous, 24/7 monitoring allows reach. They don’t have home internet, the UK in terms of care management higher-risk, higher-acuity patients to be they don’t have smart phones. This and care coordination. These are the safely managed at home and moved out population has the poorest outcomes. really critical aspects of developing of the hospital earlier. remote healthcare pathways. Success To manage this, Current Health have is not about the monitoring itself, it’s focused on the final mile into the patient’s about using the monitoring to identify home. We provide the connectivity, we Case study illness earlier and then using that insight ensure the patient is set up successful, to inform care. That means having the we provide everything the patient needs necessary infrastructure to actually Historically, heart failure pre-configured and ready to go out of do that. Current Health is unique in patients may have been given the box. We then focus on simplicity: that we allow higher-acuity, higher-risk a weighing scale and asked to simplicity of setup and simplicity of use. patients to be managed at home, but record daily weights. By instead Solutions must be simple and easy to success means combining this with continuously monitoring their use, for all patient groups. care management & coordination teams, oxygen saturations, respiration community-based care of the elderly rate and other vital signs, teams and pathways that allow for early Current Health can identify intervention and treatment at home. that the patient is becoming more hypoxic, that their respiration rate is elevating greater than normal when they are mobile and that they have reported feeling more Solutions must be breathless. This can allow simple and easy to use, an earlier appointment with for all patient groups.” their GP, earlier prescription of furosemide and thus has the potential to prevent a decompensation that may lead to a hospitalisation. Legal & General 41
Rehabilitation Prolonging Social impact Firstly, remote healthcare allows earlier independence There are two sides to this. The first discharge from the hospital. Patients Healthcare should not just be about is economic improvements, such as can get home faster, because there is prolonging life, but about prolonging reduction in hosptialisations, Emergency greater clinical confidence in their safe quality life. Systems like Current Health Department visits and the cost of care. management at home. That’s great allow more patients to be managed and The second, and more important, is for the patient and good for the overall continue to be managed at home for the patient outcome improvements. healthcare delivery system. longer while maximizing quality of life. This includes satisfaction, but also Secondly, having remote health More importantly, our focus is on early improvements in health outcomes. monitoring at home helps patients detection of illness and early provision Ultimately, the second is symbiotic with feel safer and more secure knowing of preventive treatment. This means the first. The best way to reduce the they have a continuous connection to keeping patients healthier for as long cost of healthcare delivery is to create their healthcare team. This helps them as possible and thus keeping them healthier communities. in the transitional period and can in independent for as long as possible. itself prevent rehospitalizations and We must also consider how the solutions emergency visits. impact on daily life. There is no point Most importantly, solutions like in maximizing independence if the Current Health allow objective tracking solution significantly impinges on that of response to treatment, or lack of independence. At Current Health, we’ve response to treatment, as well as early worked to make our system as invisible identification of deterioration. This can as possible, fitting into daily life. allow earlier changes to treatment. It can also allow simple education and reassurance to the patient, which can sometimes be key in avoiding an unnecessary utilization event. Caring for Britain Journeys through care Monica’s story
After many years working and living in different countries around the world, we eventually returned to live in my home town in the West Country for our retirement years.
That worked well for quite some time We eventually decided upon a social life here, you could do. Squeezing – we have family locally, which was development a few miles away that ourselves into a smaller apartment has important as two of our children live provides warden-assisted, rented housing not been easy for us… it’s a shame that abroad - and we love the area. My for independent living. While it is run by so many retirement developments seem husband has always been keen on a religious charity, it welcomes people of to assume that older people don’t need tennis and enjoyed good health right up any faith or none. much room! until he was 80. And I too have enjoyed We have our own apartment, with our A big plus point has been the fact we reasonable health. own front door, looking out onto very have support on hand. And the staff A couple of years ago, my husband’s pleasant gardens… although if I’m are excellent. I actually contracted health took a turn for the worse and we honest it does feel small. Having staff on Coronavirus quite early on and had to go had to look again at our situation. We hand if there is ever a problem is really into the local hospital, and they were very supportive of us both. Was it the right thing to do? For peace of A couple of years ago, my husband’s health took mind, yes. But it’s always nice to retain as much independence as you can in a turn for the worse and we had to look again at this life and I wish we could have delayed our situation.” moving for just a short while longer! lived near the top of a steep hill, in a reassuring, and you can buy in extra Victorian two-bedroom flat that required care as needed. We have a three-course climbing steps. It took us a while to lunch in the dining room which saves us agree, but eventually we recognised that cooking – and as our own galley kitchen Was it the right thing we would soon be needing support and it is small, that’s probably a good thing! to do? For peace of would be best to take action before it was The village is on the flat and has a couple mind, yes.” forced upon us. of excellent shops and a pub; and while Staying at home and buying in care would we still have our own car, we can also have been an option but getting out and hop on a bus or coach in any direction about would still have been a problem. for a day out. Another big plus from our We decided to look at sheltered housing perspective is that the rent is all inclusive: options locally. we pay a single amount each month which includes gas, electric, water and The development we really liked would rates – making life that much simpler. only allow you to buy an apartment, and that didn’t seem the best route to us: we There’s quite a lot going on here, such didn’t know if we would need to move in as trips and activities, although I have the future if we needed more care than to admit that I’m not that sociable a they could provide; having to sell would person so we don’t really join in that have added stress and expense. much. But if you wanted to have a busy Legal & General 43 Finding and moving to new accommodation
John Galvin and Adam Hillier, Elderly Accommodation Counsel
When older people first reach out for help, it is often prompted by a local John Galvin authority assessment, which has, in turn, been triggered by a crisis. In its thirty- Chief Executive at Elderly Accommodation Counsel six years, Elderly Accommodation Counsel (EAC) has helped millions of older since 1995. Adam was people to make informed choices about meeting their housing and care needs. John’s Deputy until he Managing a rapid home-move, triggered by a sudden life event, is taxing at any joined Legal & General in summer 2020. age. Frequently, the trigger for thinking about relocation is, sadly, the passing of a spouse. Losing a partner prompts big questions: “actually, this doesn’t work for eac.org.uk me anymore, what are my options? What can I explore?”
Planning for a better The big issues A crisis-driven life in the future around relocation relocation often The second big reason for relocation is Finding somewhere that is right involves older people a plan. When people look ahead at their for you retirement lifestyle from an unhurried moving quickly.” position of good health, they often Finding somewhere suitable is not always choose to relocate to a property that can straight forward. If you are already in a A change in health can also act as a spur best support their goals. To preserve property that can be adapted, there are to evaluate life-wide issues like housing. independence, it can work well to move things that can be done to make it work This could happen, for example, when somewhere with care and some support, better for you. It can be a big decision to an older adult sees that arthritis in the and is already adapted to meet any future say: “I’m going to be better off there than knee is making it more difficult to get in needs they may have. if I just adapt and improve my current and out of the bath, or, at the other end home”, so, retirement housing options As the range of housing for older people of the scale, a diagnosis of Alzheimer’s are developing and progressing, because expands, many people choose to move or dementia is often why a person starts they have tough competition from for a better lifestyle: living with likeminded to think seriously about how they can live home-adaptation and technology. Taking people in a new flat with nice views safely in their own home for as long as retirement housing as an example, if a and a courtyard area, lounge area, and possible. Quite often, people who have a home owner is looking to move, they may restaurants can be quite an attractive crisis moment make a decision based on want to buy a retirement property but offer. Relocation happens not just finding that: “actually my home doesn’t there are plenty of parts of the UK where because people are being practical and work, I need to move quite quickly, where there is no stock. planning ahead; it is not just a pragmatic can I go that is going to be suitable?” A option, it is an attractive lifestyle offer. crisis-driven relocation often involves older people moving quickly. Many people choose to move for a better lifestyle.” Caring for Britain Journeys through care
Selling your home and moving path from bedroom to bathroom could the appointments that Mum has got” or reduce the risk of injury. It can be the very “you’ve got so and so coming round on In our experience advising people who simple and effective uses of technology this day and a doctor’s appointment on contacted EAC’s FirstStop service that can help older adults to live in their that day” and have the digital assistant about moving home, at the age of 80 home and maintain their independence. remind your Mum in the morning so they were going through what is, at any There has been vast development of the you don’t have to be calling her while point of life, one of the most stressful traditional pull cord systems, or pendants, you’re trying to do your job and look after things that anyone can do. There’s a that can alert family or friends of a fall. your family. physical and mental strain involved with There is also a move towards telehealth selling your home, including trying to If you do want to move, where is services, where people can have their get it into a condition that is suitable to blood pressure or blood glucose levels the retirement housing? be sold, figuring out what to do with a tracked and alert the relevant support As things stand, retirement housing to lifetime of belongings and memories. service that a person is currently at a high buy is most easily found in the South of The whole process of selling - estate risk of a fall. These systems can send a England. It does very well in the places agents, valuations, getting a buyer – and message out to a family member to get that people see themselves retiring then finding the home that you want to in touch with their loved one and, maybe, to. Seaside towns like Bournemouth, move into and making sure it’s attractive share a virtual cup of tea and a biscuit, Brighton, or Eastbourne, or in the for you. It can also lead to difficult South West, places like Torquay or conversations with family members who Weymouth tend to have good retirement might be upset by closing down what housing stocks with popular retirement is still seen as ‘the family home’. People The ‘prevent, delay’ hotspots in Norfolk and Suffolk also can often conclude that “I’m better off well supported. Outside of those areas where I am”. focus of the Care Act and major cities your options are likely If people do decide to stay in 2014 can be an to be pretty limited. There tends to be their home, there is a great deal important driver of a reasonable number of retirement that can be done to make it home care setups.” developments across the country that work better. are owned and managed by registered social landlords, housing associations, The ‘prevent, delay’ focus of the Care Act and a sit down for a minute - all these and councils, but they are usually 2014 can be an important driver of home little steps with technology are making a oversubscribed in the areas with fewer 22 care setups. Tech, both assistive and huge difference to those people who have people in a position to buy a property. smart, is still really in its fledgling period. it in their homes and lives. Homeowners are unlikely to be able to There remains the challenge of people What is going to be interesting over the access council or housing association understanding what is possible with next few years is how much the tech retirement housing schemes and they smart technology, trusting it, and having develops and how much more people face a postcode lottery created by the the money to pay for it. It’s still at a period feel comfortable with relying on that geographic imbalance in the provision in its development where most things are kind of technology. Smart hubs, such of retirement housing. quite costly, but small things like smart as Alexa or Google Home, are already lighting can be reasonably cost effective. having an impact: being able, as a son If later-life frailty is a risk, then lighting the or daughter, to put into Alexa “these are
Homeowners are unlikely to be able to access council or housing association retirement housing schemes and they face a postcode lottery created by the geographic imbalance in the provision of retirement housing.”
22 www.legislation.gov.uk/ukpga/2014/23/contents/enacted 23 Relocation at older age: results from the Cognitive Function and Ageing Study, 2015, Journal of Public Health Vol 37, No3, pp 480-497, Yu-Tzu Wu, A Matthew Prine, Linda E Barnes, Fiona E Matthews, Carol Baryne. Legal & General 45
Home share? What do retired Where can people There are good ideas that may still take people, who have thinking about off. Home Share could be a win-win solution for many. The idea of Home moved, say about relocating go for help? Share is that where there is an older At EAC, our Housing Options for Older person with a spare bedroom, they could their relocation? People tool (HOOP) is a sort of housing have a younger person come and live Every year EAC runs the National Housing MOT. It asks about a person’s current with them. The younger person could for Older People Awards, which asks home and how they live in it. In a few live rent-free and for, perhaps, 10 hours people living in retirement housing to say areas of the country we have been able a week, help with cleaning, shopping, “I like living here and this is why”. Some to work with local partners to produce resolving computer problems, setting of the most frequent comments that bespoke versions of HOOP. It will ask up video calls with family, or just being we get are “why didn’t I do this sooner? you questions about your home, what company and being someone to share I’ve got this support around me, I’ve works, and is it too big or too small? dinner with. got good friends that I’ve made, good How is the garden, do you feel safe? housing manager that listens to me and How is the neighbourhood, how are This could work well in big cities, and works with the residents to provide an the stairs? Do you feel isolated? Then, London, where accommodation is environment that we’re happy to live in. I based on what the person has checked, extremely expensive. For example, a wish I made this decision 5 or 10 years it will produce answers at the end to student nurse could benefit from Home say “if you’re feeling isolated, here are Share during their studies. If a student the local befriending groups, this is how who has an interest in supporting and you get in touch with them” or “if you’re looking after people could be matched worried about your stairs, this is the local with an older adult, there could be a good Why didn’t I do improvement agency and they can look fit. If that could be made to work, that this sooner?” at getting in grab rails or putting in a stair could be an effective way of giving family lift”. HOOP can also detail what funding members of the older person peace ago rather than waiting until something might be available to help with the costs of mind, as well as forming a strong happened that triggered me to make of that. bond between this inter-generational that move”. The feedback from people pairing that helps drive out isolation and We are now also seeing more services who have moved into housing designed loneliness. Just knowing that somebody that are set up to help older people for older people is, in our experience, is there, somebody to say hello to in the with moving, taking the time to have a overwhelmingly positive. morning, somebody to maybe share conversation to find out why are they a meal with a couple of times a week looking at moving? Where are they makes a huge difference to a person’s looking at moving to? Can we help them mental health. with finding somewhere? Services will say “let’s work together to declutter and think about the things that you can get rid of and the things that you want to keep, what is important to you. Why don’t you leave it to us to deal with the energy companies and the water company? We will tell them all that you’re moving”. All those barriers to moving, mentioned earlier, are being addressed by organisations that are helping older people to navigate this, potentially difficult journey.
A student nurse could benefit from Home Share during their studies.” Caring for Britain Journeys through care Getting used
Tom Lord to life in a new Chief Operating Officer at Inspired Villages, HQ in London community Inspired Villages inspiredvillages.co.uk Tom Lord, Inspired Villages
Between 30% and 50% of people Inspired Villages, where I am the Chief When we ask our residents about why aged over 50 relocate and, as other Operating Officer, was founded in 2017 they moved from their former home, they 26 contributors have described, relocation and from day one, it was a champion rated ‘to feel safe and secure’ highest. can (broadly speaking) occur as a of creating retirement communities in Buildings, services and facilities matter the UK. Our mission is to create vibrant a great deal but community, belonging, planned decision or because of a communities that help people live support and friendships are the crucial 23 health crisis. Planned moves to new healthy, independent lives for longer, pieces of social infrastructure that communities have, however, been and to achieve this takes expertise, hard contribute to feeling safe and secure. stifled by the lack of appropriate work, trust, research, and operational That feeling of safety and security housing for older people to move excellence. My background is in requires hard work from all of our to. Half of older people who had hospitality, running large international thought about moving, but did not go through with it, said their decision was because there were no suitable The wellbeing navigator will be connected to properties available. The UK builds and work with the local primary care network 7,000 retirement dwellings each year for an over 65 population of 12 million to ensure that village residents have access to and growing, and the UK only provides the widest range of expertise whether services retirement communities for 75,000 directly delivered by the village team or access 24 people . 0.6% of UK people over 65 to clinical specialties, and mental health services.” belong to a retirement community, whereas the figure is 6.1% in the hotels where guests were with my professionals - community does not just USA, 5.4% in New Zealand and 4.9% team for a few days or a week. In our 25 happen. First impressions are always in Australia. retirement villages, residents stay with us key so we focus resources and expertise for years and I want to deliver the same on welcoming new residents to our high-quality standards seen in five star communities. We work with professional hotels day-in, day-out in our communities, research organisations to survey our using tried and tested methods from new residents about their experiences. 30-50% my hospitality days. I strongly believe For example, we review the ‘Introduction companies should always focus on meeting with your village manager’, ‘the continuously improving performance, and of people aged support offered to help you move into the best driver of change for the better is over 50 relocate the village’, and ‘village activities prior understanding what our residents think to moving’. For ‘move-in’ day we look at of our services. seven key factors including connection
24 Inspired Villages research 25 Inspired Villages research 26 Fuze Research Q3 2019 Legal & General 47
of broadband and phone services and the People over 65 belonging to a retirement community overall quality of the home on move-in UK day. To support older people with their relocation, we can provide moving- 0.6% in services that help to declutter and USA assisted moving services to support the relocation process. I, and my team, are 6.1% proud that our work is recognised and New Zealand when asked ‘to what extent do you feel 5.4% you belong in the village’, 100% of our surveyed residents agreed to some or to Australia 27 a great extent. 4.9% Alongside the relocation journey and initial welcome, we have created a variety of programmes to support people as care network to ensure that village ambition. In a Longitudinal evaluation of they navigate their new community. For residents have access to the widest the ExtraCare Approach, Aston University instance, we can offer a buddy system range of expertise whether services academics and researchers have found whereby a current resident can team up directly delivered by the village team or that living in a retirement village leads access to clinical specialties, and mental to a 46% decrease in the number of health services. planned GP visits.29 Beyond General Practice, retirement village residents Technology also plays its part in the These interventions experience a 31% decrease in planned promotion of wellbeing. Working with hospital admissions and the duration of add up and research partners, we are researching how best to stays dropped from an average of 8-14 use existing and emerging technological suggests that they may days to 1-2 days.30 Retirement village create a National Health and digital solutions. This includes pinpoint alarms, fall prevention and Service saving of £3,500 detection systems, call systems and per resident, per year.” thermal control and lighting systems, algorithmic passive monitoring, and Living in a retirement health and wellbeing monitoring.28 village leads to a 46% with a new resident to help break down any social barriers and figure out the My team has worked hard to develop decrease in the number rhythm of the community. and deliver this model of support and we of planned GP visits.” can see real results for our residents, our The key innovation we have introduced communities and the NHS. is the role of the wellbeing navigator, residents are also less likely to need who works with the residents in each to move into more costly institutional village, and the local community. Their accommodation like care homes – primary role is to connect with residents The UK builds 7,000 research shows a 50% drop in need to do and bring people together through so amongst residents.31 introductions and activities, so residents retirement dwellings can naturally build networks, which often each year for an over 65 These interventions add up and research blossom into strong friendships across suggests that they may create a National the village. Success for the wellbeing population of 12 million.” Health Service saving of around £3,500 navigator programme involves outcomes per resident, per year.32 The UK government has stated that one that help residents to engage socially, In a recent interview, Jamie Bunce (the of its ‘grand challenges’ is to ensure access fitness and healthy activities, get CEO of Inspired Villages) cited a specific that people can enjoy at least five out and about and, if required, be a point example of the benefits of the community extra years of healthy, independent life, of support in the arrangement of more building and wellbeing enablement regardless of wealth and there is now formal care services. model: “We also have inter-generational strong evidence that retirement villages The wellbeing navigator will be connected activities. We held an inaugural cricket are supporting the achievement of this to and work with the local primary match last year, for example, at our
27 Fuze Research Q3 2019 30 Ibid 28 Inspired Villages Wellbeing & Care Strategy 31 ilcuk.org.uk/wp-content/uploads/2019/01/Establishing-the-extra-in-Extra-Care.pdf 29 www2.aston.ac.uk/migrated-assets/applicationpdf/lhs/245545-final%20report1.pdf 32 Healthier and Happier, WPI Strategy, September 2019 Caring for Britain Journeys through care
village in Warwickshire. We convinced technology and interventions to reflect the local cricket team to play our group – this paradigm change in wellbeing comprising residents, residents’ families, I could see his biological and care. Our approach to dementia staff and our families – and we had an illustrates this pathway. afternoon of cricket. At one point, we age decreasing in front had a gentleman in his early 80s who 1 in 14 people over the age of 65 and of my eyes.” 33 admitted to not having been on a cricket 1 in 6 people over 80 have dementia. Currently, 850,000 people are estimated pitch for 50 years. He was batting with a person’s pathway will require different to have dementia and this could reach 14-year-old and I could see his biological support and different tools at different two million people in thirty years. The age decreasing in front of my eyes, such times. One person living with dementia increasing prevalence of dementia was his joy at getting back in front of will not have the same experience, needs means that we will need to consider the wicket”. or wishes than another. To meet this solutions to enabling those living with the need, a community must have access to It is important to recognise that condition to enjoy their lives within the the widest possible range of clinical and retirement communities are not care village community for as long as it is safe non-clinical expertise and interventions. homes; care can be provided in our to do so. villages and we can facilitate this but the The communities we are building are primary focus of a retirement community well aligned with the NHS Forward is peoples’ health and wellbeing. We Plan’s goal to move from the current want to enable people to create their treatment model to a more proactive own ecosystem to meet their goals and and preventative model of healthcare. Currently, 850,000 adapt to manage or even overcome As we move into our next phase of their challenges. Each residents’ needs growth, in a world gripped by a global people are estimated to are different and no-two-people age pandemic that has meant the onus on have dementia and this in the same way: underlying levels of healthy lifestyles and safe environments could reach two million health, family and social relationships, for older generations has never been so personality and outlook mean that each strong, we will use the best research, people in thirty years.”
33 www2.aston.ac.uk/migrated-assets/applicationpdf/lhs/245545-final%20report1.pdf Legal & General 49
Without becoming a specialist expert in such time as there is agreement that the UK. There is much work to be done dementia care, the demographic profile this can no longer be safely achieved. to catch up with other countries like of our residents means we must deliver An Inspired Village will be a ‘Dementia Australia and New Zealand. As larger our model of community in such a way friendly’ environment but not a provider organisations, like Legal & General, see that residents living with dementia can be of specialist dementia care. the beneficial impact that retirement a part of village life, with appropriate care communities deliver, more investment and support. will enter the sector to create many more new villages. I am looking forward to Our village staff are being trained welcoming many more people to live in to support residents with dementia The aim is to maximise our retirement communities over the next and when we design our homes and the opportunity of decade, creating the opportunity for a communal venues, we will ensure that someone remaining fresh start, bringing in local investment there is consideration of people living and freeing up NHS resources. with dementia. The village will provide in the village if and appropriate activities, therapies and until such time as events that are accessible to those Dementia in living with dementia and support them there is agreement the UK and their families in staying put within that this can no longer 1 : 14 the village community. The village team over the age of 65 will seek advice support and expertise be safely achieved.” from the personal care team and with the Primary Care Network. The aim is to Over the next few years, the retirement maximise the opportunity of someone community movement is set to play a 1 : 6 remaining in the village if and until far larger role in how older people live in people over 80 have dementia Caring for Britain Journeys through care Let’s work together to design the future of care By Tony Watts OBE Director, EngAgeNet Tony Watts Campaigner on retirement Quite rightly, another contributor draws attention to the significance of the issues and Chairman of the South West Forum on 1948 National Assistance Act. As well as abolishing the Poor Law, put in place Ageing since June 2011 by Queen Elizabeth I, it laid the foundations of the care home and social support system we have today – ensuring that the last years of someone’s life weren’t spent in a workhouse or dependent upon charity.
That seismic shift in social provision The 2014 Care Act, the NAA’s long- diminishing many lifelines that connect followed a traumatic war that changed awaited update, begins by describing the those in later years to the rest of the attitudes towards so many things, duty to promote “wellbeing”. We have, society and threatening quality of care. when we collectively decided that the old ways of doing things were no longer fit for purpose. Perhaps we need traumatic events to review established We urgently need a readily-accessible choice of modus operandi. Perhaps one of those times is now. housing and care support resources enabling all The pandemic has thrown a harsh of us to not simply eke out our last years… but to spotlight on how we care for people as they lead rich, fulfilling lives, connected to friends become less independent… and on how we and family.” keep them connected to the rest of society. The sight of grandchildren pressing their the Act assumes, gone past meeting The stories I recount in this paper faces against their grandparents’ windows the first two of Maslow’s hierarchy of highlight gaps in the system that only a has seared our hearts. needs, physiological and safety… now major rethink of how we house and care let’s address belongingness, esteem and for older generations will satisfy. self-fulfilment. In particular, we need to focus on the Today’s 80-year-olds That’s what this paper addresses too. We ethics around how care can strip away urgently need a readily-accessible choice people’s freedom of choice and control - are very different of housing and care support resources often unwittingly but often systemically. from those in 1948; enabling all of us to not simply eke out Today’s 80-year-olds are very different our last years… but to lead rich, fulfilling from those in 1948; tomorrow’s 80-year- tomorrow’s 80-year- lives, connected to friends and family. olds will also be different from today’s. We can’t go on providing the same old olds will also be Recent years have sadly seen a care and housing. different from today’s.” continuing squeeze on public resources Legal & General 51
Photograph posed by models
The good news is, there’s plenty of evidence of “what works” to begin that process: housing models that promote intergenerational support; retirement no one has a better villages where residents can smoothly transition to different levels of care understanding of what will provision; housing co-operatives where groups of older people support work for older people than each other. There’s no one-size-fits-all approach that will be to everyone’s taste, but – critically – promising new models older people themselves.” are emerging. We need more examples of “what The challenge, of course, is finance. works” made available to our rapidly- More certainty on funding future care will ageing society; we need more choice represent a major leap forward; until that locally allowing us to age in place; long-awaited day arrives it’s heartening and we need more involvement of to see institutions like L&G developing older users themselves in the design models that look long-term at societal process. Because no one has a better needs, as well as harnessing capital for understanding of what will work for older the public good. people than older people themselves. Caring for Britain Journeys through care Legal & General 53
Caring for Britain Consultation questions
What are the barriers to innovation, start-up, and scale up, 1 in the UK care sector?
What can be done to encourage families and individuals to set goals and create their own care ecosystem? How can they 2 then be supported to make a plan to deliver it?
How can care-related benefits be more easily understood? How could the benefits system be reformed to integrate better 3 with the way people make and plan their care ecosystems?
What more can be done to help people who want to stay in their own homes? How should the NHS and all kinds of 4 care providers work together to deliver this?
What can be done to encourage greater choice and diversity in housing for older people, for example in retirement 5 villages, multi-generational communities and both urban and country settings? market, to close the gap with the US and Australia?
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