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Chapter 7: The vision for care

Given that part of our remit is "to investigate the use of existing models of care and the use of other services and support as an alternative to long term residential care", we spent a considerable amount of time on the care that will be appropriate for the increasing numbers of older people expected on the basis of the demographic projections. This led to a vision for care that underlies models of care that will have to be worked out at local level.

Many older people are fit and healthy, or reasonably so, and have much to contribute to life. We welcome the attention being given in various ways and places to older people as contributors, able to play an active part in life. Many are part of the care arrangements for their grandchildren, others are carers, while others are actively engaged in community organisations.

Where people are living longer lives, some of those extra years of life will be complicated by chronic conditions: for those with long-term conditions, more health care and community care will be required. A major aim must be to encourage people to become participants and investors in their own care, rather than turn them into consumers of public service.

We felt that increased hospitalisation and institutionalisation amongst the oldest old is not inevitable, and noted that some areas of Scotland have shown recent reductions in occupied bed days for this group. A proactive approach is essential. An older person can become institutionalised very quickly - a frail older person might only be in hospital for a week or so before losing their independence and self-confidence. A rehabilitation programme or service will prevent a short-term crisis from sparking long-term dependency.

A good example of the proactive approach are some of the initiatives across Scotland being taken in palliative care, with so called gold standards to anticipate possible problems and deliver support at home. Such advanced care planning is of equal importance to those frail elderly dying of non-cancerous conditions (who are three times as many as those with cancer).

Principles

In considering a vision for care, the following principles guided us:

• There should be an emphasis on health improvement. The task is to keep people well, and maximise their independence and well-being in later life, so they are healthy when they are older. The ideas of well-being and active citizenship in later life work together, so that people have a longer lifespan and a longer healthy lifespan.
• Care should be provided at home within an agreed risk assessment and resource framework, or provided in a homely environment which meets the person's needs and maximises their independence and well-being.
• This care would be consistent with the principles outlined in the Adults with Incapacity Act - that interventions should provide benefit, be the minimum required and should take account of the wishes of the person - and with risk assessment best practice.
• People should be in a level of care that is as low as possible - in the past many were in care homes because it suited, rather than because they really needed to be there (though this has changed in recent years), or people placed in continuing care beds simply because the beds were there.
• We need to keep the individual needs of the older person at the centre, so they get the service they need when they need it, regardless of who provides it. Consequently which organisation or profession provides the service should not matter - what matters is that the individuals providing the care have the right skills, knowledge and competencies.
• Citizenship - older people are citizens with important roles in supporting families and within communities. They are also the biggest providers of support to other older people. They have both rights and responsibilities; want to contribute to society; get involved and put something in. They should not be treated any different just because they are older. Services for older people need to be designed and delivered in a way that supports older people as citizens and enables them to participate in the wider community if they choose to do so.

These principles led us to the following conclusions:

• looking at the needs of the individual points to the need for a whole systems approach, looking across health care, community care and housing providers in the statutory, voluntary and independent sectors;
• we could not determine the range and capacity of services at local level, but we can set a framework of the way we believe health care, community care, housing, leisure and recreation, and lifelong learning services should be provided to meet the needs of older people;
• healthy living, living well and prevention have significant parts to play;
• new ways of thinking and providing services are required;
• more innovative models of care are needed, using equipment, adaptations and technology where appropriate and more flexible use of services eg care homes for short term breaks; and
• staff can be used more flexibly, and there is a need to be innovative and recruit and retain staff, not least in rural areas.

Care for the future

Earlier we state that a new way of thinking and providing services is required by redesigning current services. There is always a need to keep the local strategy for care up to date, building on best practice, looking beyond the here and now. We think the Care Home Sector (private, voluntary and local authority) should be fully involved in this, so that they become more diverse and locally designed provision, closely linked to respite, care at home, extra care housing, GP out-of-hours services, community nursing etc. The Care Home Sector need to be part of the whole system redesign, recognising the part they play in the overall spectrum of care delivered to the local communities they serve.

We believe the need for services for increasing numbers of older people should be met through more flexible services, step up and step down, better use of equipment and adaptations, technology and Telecare, mainstreaming of Joint Future, and increasing emphasis on promoting active ageing and on prevention. Flexible services include the following:

active ageing and health improvement

anticipatory care of long term conditions, with greater emphasis on self-care, self management and advanced care planning

housing provision

helping people stay at home, with care packages of one kind or another -
care at home
domiciliary care
rapid response teams
day care and day opportunities

Step up and step down/rehabilitation/intermediate care - examples include
intensive care at home
community rehabilitation services
short stays in alternative accommodation - e.g. care home or community hospital

Telecare

equipment and adaptations

falls prevention

care and repair

palliative care and improving end of life care

imaginative provision of leisure and community learning services/opportunities for isolated, vulnerable older people with mobility problems.

The following sections set out our thoughts on these.

• Active ageing and healthy living and well-being. Many older people are fit and well, active contributors in many aspects of life. They may look after grandchildren or provide care for others. Churches and voluntary organisations across Scotland organise activities during the day that may not be specifically for older people, but are held at times when retired people are free. These provide social contact, and for those living on their own have a particularly beneficial effect on their health to avoid depression.
• Health improvement. It is important that people reach older age in good health. Health promotion and well-being have a great deal to offer in reducing illness and extending independence. Individuals at every stage of life have their part to play by deciding to stop smoking, to drink sensibly, to eat a healthy diet and to take appropriate physical exercise. Physical activity helps maintain functional ability, and prevents disability and immobility. For older people it is particularly important in maintaining independence and reducing social isolation.
• Building a Health Service Fit for the Future and Delivering for Health emphasise enhanced primary care services, more anticipatory care and management of long term conditions. This will benefit older people disproportionately, and improve their health and well-being. Community Health Partnerships have a key role here.
• Local authorities have a key role in the delivery of health improvement in their communities. Libraries, swimming pools and leisure facilities, and opportunities for life-long learning, for example, all contribute to the health and well-being of older people.
• Housing. Housing has a significant contribution to make towards the care needs of older people, bearing in mind flexible services and the principle that interventions should be at the lowest level possible. It points up, for example, the role of extra care housing as a substitute for care homes, not just for long term accommodation but also for rehabilitation and intermediate care.
• There is a need for more creative housing solutions in all sectors. Some of these are already there, others may require better use of existing provision. There is some evidence that sheltered housing provided 30 or 40 years ago may not meet current needs, and are subject to voids. This may be partly due to changes in expectations - the great increase in owner-occupation in Scotland over the last 25 years means that people who have become used to owner-occupation may be very reluctant to entertain becoming tenants. Yet sheltered housing is an asset that should not be wasted. It may be possible to make better use of those developments that have become less popular with constructive solutions. These may involve appropriate re-development of the fabric and/or development of services.

Another, perhaps surprising, example is the provision of 24 hour support in multi-storey blocks in Glasgow:

• The Dementia Services Development Centre has highlighted adaptations of sheltered and very sheltered housing to become more acceptably dementia friendly. These range from the simplest changes, through features that can be included in planned maintenance programmes, to the upper end where major alterations would require capital investment -
  • Effective colour contrasts: e.g. sanitary ware
  • General personalisation of environment
  • Visible storage
  • Assistive technologies
  • Improved signage
  • Floor coverings and thresholds
  • Visibility of toilets
  • Lighting levels and quality
  • External garden spaces
  • Wheelchair manoeuvrability, and
  • Additional activity spaces.
• Consideration can be given to "future proofing" of new buildings at the design stage, so that they can be used for different purposes in future as needs change. This ties in with the Strategy Forum Equipped for Inclusion report recommendation 10 for a lifelong approach. South Lanarkshire Council has at least 2 new care homes that have been designed to high space standards and high standards of interior design. This has allowed a wide range of needs to be addressed including respite and palliative care, and they could even be used as extra care or as hotels - depending on need.

More flexible services. Services must respond to people's assessed needs. Traditionally services have been organised around the service, and what it can provide for the user. Increasingly, however, the client is seen as being at the centre with services tailored to meet their needs. This was fundamental to The same as you? review of services for people with learning disabilities (May 2000), and recently in the personalisation agenda.

A service that responds to a person's needs has a very different focus and feel. It organises its view of policy and delivery around the person, and does whatever it can to support that. Looked at from the client's perspective and working back, the organisation that provides the service is relatively unimportant - the important factor is the client at the heart getting the service he or she needs.

It follows that services need to be much more flexible to meet the needs of the individual client. There is always a need to check whether:

• services are delivering what they are intended to do
• there are better ways of doing things.

This emphasises the need to continue to modernise traditional care services - e.g. development of overnight care services, shift to more intensive care at home, reviewing day services in the light of more personal services, joining up day centres and day hospitals, and more flexible use of care home provision.

On the last point Better Outcomes for Older People Part 2 noted that:

Residential care should increasingly be seen as a flexible and not necessarily permanent part of the spectrum of care. Speedy access to fast, responsive, flexible and adaptable services provided in day hospitals, community hospitals and care homes, which are able to provide care at night and the weekends, is crucial.

We agree with that as an example of how existing care provision could be used more flexibly.

Step up and step down/rehabilitation/intermediate care

We felt that with the increasing numbers of older people, there is a most pressing need for an increase in services that fall within this category. There is currently a lot of interest in this area, sometimes loosely described by the term "intermediate care". We are wary of using this term, as it means different things to different people, and has a specific meaning in a healthcare context. It is a term that has been used in the health service in England, and indeed it became in effect another tier in the NHS with its own attendant waiting times etc. That is not what is intended.

What we have in mind are services for older people with complex and/or more intensive needs, that are able to respond to rapid changes in the personal needs or frailty of those people. Such services should:

• pro-actively support people living at home so they are not inappropriately admitted to a care home or hospital
• provide intensive rehabilitation prior to returning home
• actively support older people on returning home, and
• facilitate provision of appropriate specialist health support to people in care homes.

Many such services are in place, but they may operate as separate initiatives and not as part of a continuum of care. Examples of such services include:

• intensive care at home, including rapid response and early supported discharge;
• rehabilitation - particularly important in the interface between hospital and home;
• short stays for rehabilitation and respite - often known as intermediate care or step-up/step-down services, and again important between hospital and home.

Telecare

Telecare is about using new technology to give people the peace of mind they need to live in their own home for as long as possible knowing that help is at hand if anything goes wrong.

Telecare: wider application

It is vitally important to consider the support service infrastructure that is around the technology. Installing monitors on their own, or even monitors and a call centre, does not provide the solution. It is the response mechanism - whether that is the neighbour who is prepared to be contacted at any time of the day or night, or on call staff - that allows frailer older people to remain at home.

We believe that the application of telecare should be replicated elsewhere. Unfortunately, this does not appear to be happening. It is not clear whether this is because there is a lack of confidence in the West Lothian example, or because of the absence of funding to make the necessary investment in change.

West Lothian carried out a radical reprovisioning of its care for older people. Telecare can be applied widely, however, and does not depend on new build housing and/or new care homes. Clearly its application has to be considered carefully, since it is not just about the purchase of clever monitors - there needs to be an infrastructure in place to support the technology. Investment in staff training is required, and the need to see what suits the person and the system. But there are significant benefits to be obtained.

We feel there is a need for a more proactive approach to the application of telecare in the homes of older people in Scotland. We have noted the announcement by the Department of Health in England of the Preventative Technologies Grant, under which £80m has been allocated over two years from April 2006 for innovative telecare services to help at least 160,000 vulnerable people live independently for longer.

On a population pro rata basis, £80m in England equates to £8m in Scotland - £4m a year. This is not a large sum and we believe there would be benefit in encouraging the roll-out of telecare more widely in Scotland by the provision of a sum of this order for a limited period. Such a sum could be issued in several ways:

• it could be part of the local authority revenue settlement for community care. We recognise the Scottish Executive would want to ensure that any extra provision was used for the purpose intended. Arrangements would need to be made through COSLA, or by other means, to achieve this.
• challenge fund arrangements would ensure that innovative applications were considered, and would possibly lead to deeper thought by local authorities on the application of telecare and how it would fit with the rest of their services.

It seems clear to us that there are significant advantages to be gained from the provision of telecare. Regardless of whether or not additional funds are made available for this purpose, we believe local authorities should consider the use of telecare as part of their response to the challenge of providing services for the increasing number of older people in Scotland in the future.

Equipment and Adaptations

Equipment and adaptations are not given the attention they should be given, probably because they are seen as "low tech". They have a very real contribution to make, however, in helping older people to stay at home safely for longer. They have positive effects on independence, self determination, and physical and mental wellbeing.

The potential of equipment and adaptations needs to be realised. The Audit Commission compared costs of equipment and adaptations with traditional care services such as home care. They found that e quipment and adaptations are cost effective alternatives to other care services. Examples they quote include that:

• the cost of redesigning a kitchen so that a disabled/older person is more independent and can prepare meals, snacks and hot drinks equated to 14 hours home care a week over a year.
• the cost of home care while waiting for a stair lift to be installed (delayed due to pressure on the equipment and adaptations budget) cost more than the stair lift. The stair lift cost £2,700 - an 18 months delay required 5 additional hours home care per week at a cost of £3,850.

Despite the evidence, kitchen redesign is rarely done; and too often people wait for equipment and adaptations, perhaps because that budget is under funded, without consideration of the costs of delay to other services.

There is a need for joined up working so that, for example, the local authority provides a ramp at a house where the NHS is providing a wheelchair for the occupant. Joint delivery and collection initiatives, e.g. shared storage and distribution, enable improvements to be made to service delivery.

Access to equipment and adaptations emerged as a key issue for carers during preparation of The future of unpaid care in Scotland. Carers requested that equipment and adaptations should be more accessible and visible in high street show rooms and on line stores by 2014. They acknowledged the need for professional advice, but believed equipment and adaptations should be available without unnecessary bureaucracy.

Falls prevent ion

Adding Life to Years, the Chief Medical Officer's expert group report on the Healthcare of Older People (January 2002), recommended that NHS Boards should ensure that falls assessment services are available.

Facts:

• one in 3 people over 65 have a serious fall every year
• 62% of deaths in older people are caused by falls
• at age 65 and over falls account for 71% of serious injuries
• at age 85 and over falls account for 78% of accidental injury deaths
• falls are the biggest cause of accidental death in the UK

There is a good evidence base for falls prevention work. While we are aware of work proceeding in some areas of Scotland, it is likely the services are patchy with some areas having better provision than others. People in all parts of Scotland should benefit from a falls service in their area.

We believe falls prevention is a bit like equipment and adaptations discussed above, and is not given the attention it should be given because it is mundane and low profile. Yet it has potential to make significant difference to the lives of older people.

The housing and social care components of falls prevention - for example home safety audits, provision of handrails and grab rails, reorganising furniture - should also be addressed.

Care and Repair

Care and Repair looks at an older person's practical needs and considers how, if they are met, the person will be able to live at home. It is a major contributor to reducing delayed discharge and inappropriate admissions.

Good housing is fundamental to long term well-being, and even arranging simple things like changing light bulbs or tap washers can make a huge difference to an older person. Care and Repair is a person centred approach that ensures better outcomes for those who need it.

Palliative Care and Improving End of Life Care

End of life care is important to an older person. At this stage in life, people have particular needs arising from, for example, dementia or chronic heart/chest conditions. They need to be kept well and also given a choice about end of life/palliative care.

The Gold Standards Framework for community palliative care (reference at Annex E) has done much to improve end of life care for people with cancer. The Framework was developed in primary care to provide a framework for GPs, district nurses and their colleagues to improve the organisation and quality of care in the community for patients in their last year of life. The Framework was intended initially for cancer patients, but is now being used for any patients with a life limiting illness, in any community setting.

The NHS End of Life Care Programme (reference at Annex E) set up in England in 2004 aims to improve the quality of care at the end of life for all patients and enable more to live and die in the place of their choice. There is presently no comparable programme in Scotland. Whilst the majority of people would like to die at home, only 20-30% do. Existing Palliative Care Managed Clinical Networks and others need continued support to encourage advanced care planning and develop necessary redesign of services.

The Scottish Partnership for Palliative Care issued a consultation document on best practice in palliative care in care homes. Its draft report is National Palliative Care Practice Statements for Care Homes in Scotland. It made recommendations on the Gold Standards Framework, which is being used in Scotland. The final Care Practice Statement is expected later in 2006.

It should also be noted that the capacity of care homes to support people who are dying has a major impact on the system.

We think that:

• consideration should be given to additional investment in improving palliative care services in Scotland, building on the success of the Gold Standards Framework and of the NHS End of Life Care Programme in England, and
• the effectiveness of such end of life care initiatives in Scotland should be evaluated.

Joint Future

Joint Future deals with the interaction between healthcare and social work/housing or community care. It is about different organisations - NHS boards and local authorities, who have different structures and accountabilities - working together for continuous improvement so that the individual gets faster access to better services and better outcomes, together with more support for carers. There is much material available, but we point particularly to Better Outcomes for Older People: A Framework for Joint Services published in May 2005 as an excellent source of guidance on planning and commissioning services for older people.

Technology

We have already noted that it is difficult to predict what technology will be developed over the next 10-15 years. It follows that it is difficult to quantify what effect technology will have. Indeed many of the communications and information technology developments of the last decades have been in unexpected ways ( e.g. the cavity magnetron in domestic use as the microwave, the rapid rise in text messaging). Already mobile phones have revolutionised nursing on call arrangements.

The press reported on 29 August 2005 the use of mobile phones to monitor blood sugar levels to help diabetics to control their illness. One user said "I can't remember the last time I had to take advice about my blood glucose readings, because the indications are so clear" (full trial results released at a European Association for the study of Diabetes meeting in Athens September 2005). This is one illustration of the use of tele-medicine which, whether by mobile phone or otherwise, can be used to monitor a variety of health problems.

While we may not be able to predict technology, it is clear there will be benefits either by giving users more control and better information, or by saving work that would previously have to be done by a nurse or other member of staff.

Physical design issues: public buildings and spaces

There is an interesting discussion around settings and bricks and mortar issues. There are well established views and principles but local partnerships need to determine what is required in their locality to meet the needs of both the local population and the individuals that require care and support who live there.

Small-scale integrated services are usually more flexible and acceptable to people, but the reality is that many vulnerable older people (including those with mental health problems and dementia) do not feel safe or accepted in using ordinary community facilities unless these can be designed and supported to meet their needs.

One of the challenges around future provision for vulnerable older people and for preventive services is ease of access to ordinary community resources and leisure and recreation facilities, retail outlets, and transport, to respond to the needs and preferences of older people with particular needs.

Many more older people could access mainstream facilities if these were made more accessible and attractive to them - this might involve special sessions, and additional support. Sometimes the results do not match up to intentions. Older people, for example, often find reception desks difficult because there is background noise, and they cannot hear the receptionist across the desk: small changes here can make a big difference to them.

Older people have concerns about safety and security in public spaces - architectural and planning responses are needed to address these issues. There is the idea of 'third space' that older people can use that meets their needs for company, activity and support. Some specially built provision may be needed to do this, on smaller or larger scale. It is important that the needs of older people are addressed when facilities like healthy living centres are built. The Institute for Public Policy Research published a paper Meeting Complex Needs: the future of social care (October 2004) ( e.g. learning disability, mental health and substance misuse) which argued for 'Connected Care Centres' built on the lines of Sure Start Children's centres, set in most deprived communities and those most vulnerable to experiencing complex needs.

Physical design issues: houses

Houses can be designed to meet peoples' different needs and circumstances, which will change through a lifetime. Thus people can stay much longer in their existing homes, and avoid the trauma of a move when they are less able.

The Scottish Building Standards have required a 'visitability' standard for all new houses since April 2000. This generally requires level or ramped access to at least one entrance; a prescribed minimum size for corridors and doors on the entrance floor; and provision of a WC designed to be accessible to ambulant disabled people on the entrance floor. Additionally, flats more than four storeys high must have a lift. In practice many up-market flats lower than this height built in recent years also have lifts.

The Scottish Building Standards Agency issued a consultation paper on 1 March 2006 on access and use of both domestic and non-domestic buildings, including looking towards dwellings that are better able to address the different needs and abilities of occupants and visitors. This would allow people to stay in their homes for longer. The review is considering present non-statutory guidance, including the 'Housing for Varying Needs' criteria applied by Communities Scotland to all funded social housing in Scotland and the 16 'Lifetime Homes Standards' championed by the Joseph Rowntree Foundation in England and Wales.

As a condition of funding, Communities Scotland seeks compliance with the Housing for Varying Needs Design Guidance, so that newly-built, refurbished or adapted social housing achieve a degree of flexibility, suit people of different abilities, are convenient to use and fit for their purpose. Such housing currently accounts for around 20% of all new build in Scotland.

Our vision for care: conclusion

We believe that the vision for care we have set out is the right one to meet the needs of the increasing numbers of older people who will be living in Scotland in the next 20 or so years. Its main features are:

• people helping themselves, through active ageing (physical and mental activity) and through healthy life decisions ( e.g. stopping smoking, eating healthier food)
• enabling people to live as normal a life as possible in their own homes
• more flexible and imaginative services
• much more use of step up and step down
• more widespread use of equipment, adaptations, technology and Telecare
• greater emphasis on falls prevention
• more emphasis on providing better means of access to services for people with mobility problems.

Enabling people to live as normal a life as possible in their own homes is long-standing policy and was, for example, considered by the Care Development Group in its report Fair Care for Older People published in September 2001 (see Annex C).

More recently, Building a Health Service Fit for the Future set out the changes necessary to support our older population, and said that the key policy implications of an action plan included (first item mentioned):

There should be greater integration of health and social services focused largely on the care and support at home of Scotland's frailer older people with a commitment to optimal management of long term conditions, continuing illness and disability. (Volume 2 page 49).

We believe the emphasis in Scotland should continue to be towards enabling people to live as normal a life as possible in their own homes. Where they are unable to do so they should have the right to choose other housing options such as intensive support at home, various models of extra care, supported housing often involving assistive technology and telecare, sheltered or very sheltered housing, adult placement schemes, retirement communities and shared housing, cooperatives, specialist housing of various types and tenures, and care home.

There is a need to take into account the substantial increase in the numbers of older people in the years ahead, and recognise that as a nation we may not be able to afford to look after everyone in their own home. As a Group we felt we wanted to place less of an emphasis on care home provision, so that care home provision becomes a smaller proportion of total care. But the increasing number of older people may be such that the number of places in care homes remains much as at present, but become much more part of a whole system provision rather than a one-off final decision.

We are not in a position to forecast the balance of need between these options across Scotland over the next 20 years. Each area needs to undertake its own capacity planning taking account of

• where services are at the moment and of known developments,
• population projections
• the way forward set out in this Report
• the needs of the population in the years ahead, and the services that will be required to meet them.

The need for particular service provision will only be known when this has been done.

This vision for care is a development of polices that have been pursued for some time. It places an emphasis on more flexible services, and step up and step down. There is a remarkable consonance with similar emphases in Building a Health Service Fit for the Future, in Better Outcomes for Older People, in The future of unpaid care in Scotland and in the Report of the 21st Century Social Work Review. We have all been dealing with the same issues, if from different perspectives, and are reaching similar conclusions.

Our desired outcome and how we get there

Our desired outcome is as set out above, with flexible services meeting the needs of a much larger number of older people, many of whom have high expectations.

The practical outworking of this in NHS boards and local authorities requires leadership and visionary thinking by people who can look across the board, and see what the local needs are and the services that can be delivered that, first and foremost, meet people's needs.

This approach will highlight new ways of working that will require staff to work in different, yet more fulfilling ways, as they see the needs of individuals being met better. Other ways of providing services may result in a release of staff time, so staff can be used more effectively.

As already pointed out, this requires a whole system approach to re-shape care to meet a desired aim. In 21 ^st century Scotland, this means

• meeting people's needs better, and well;
• promoting independent living, so that people can stay at home where they choose to do so and where that is possible;
• avoiding or preventing hospital admissions; and
• reducing delayed discharges.

This requires capacity planning at local (local authority and NHS board) level, and to that we now turn.

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