Position statement and action plan for older people, including people living with dementia

Transcription

1 Position statement and action plan for older people, including people living with dementia October 2010

2 About the Care Quality Commission The Care Quality Commission (CQC) is the independent regulator of health care and adult social care services in England. Whether services are provided by the NHS, local authorities or by private or voluntary organisations, we make sure that people get better care. Contents Background 3 How we developed this plan 4 What people told us 4 General messages from people 5 What does the Care Quality Commission need to do? 11 What we will do 12 Priorities for the first year 17 Appendix 1 Background and briefing paper 18 Key statistics 18 Overview of the policy landscape 18 What do we know about the use of health and social care services, and the quality of those services for older people and people with dementia? 24 Distribution of quality ratings for registered care homes 26 Home care agencies 28 Shared lives schemes 28 CQC Position statement and action plan for older people 2

3 Background As the independent regulator of health and adult social care, CQC has a unique ability to influence the quality of care in England. We are responsible for driving improvement and taking action if providers of care do not meet essential quality and safety standards. We will also ensure people have the power to make informed choices about the care services they receive and access to services that offer a seamless experience of care. We want to focus our activities to ensure they make a real difference to people. We have therefore published a five-year strategic plan setting out how we intend to approach our work. We have identified five priorities where we believe our unique role as regulator will enable us to significantly enhance the quality of outcomes for people who use services: 1. Ensuring care is centred on people s needs and protects their rights. 2. Championing joined-up care, so that health and social care become better coordinated. 3. Acting swiftly to help eliminate poor quality care. 4. Promoting high quality care. 5. Regulating effectively, in partnership. Our work to achieve improvement in these priority areas will always be underpinned by the principles of equality and human rights. This will include a strong focus on differences in access to services, the safety and effectiveness of care, and people s rights to be treated with dignity and respect. We will pay particular attention to the needs of people in more vulnerable circumstances, including those with mental health problems, learning disabilities, physical disabilities or long-term conditions; older people; and children and young people. During our consultation with various people to help us shape this position statement and action plan, a number of adults under the age of 65 living with early onset dementia challenged the inclusion of dementia care within a broader position statement on improving services for older people (see general messages from people outlined below). They were concerned that in doing so, younger people living with dementia, and their carers, might feel excluded from CQC s message and statement of priorities and that dementia would be labelled as an age specific condition. We acknowledge that there is potential tension in combining the needs of such a wide spectrum of adults within a single vision and document. We hope to have allayed this concern through the inclusive wording of this position statement and, most importantly, through the action plan of what CQC will do over the next five years to address the needs of people of all ages living with dementia, equally, as well as older adults who may have multiple and complex health and social care needs. The new CQC Position statement and action plan for older people 3

4 regulatory framework and essential standards of quality and safety seek to focus more on outcomes and people than any previous regulatory system and, therefore, aim to improve services for anybody and everybody who uses them, regardless of age or need. While we cannot seek to produce separate documents and plans for everyone s needs or for every condition, the purpose of this document is to highlight how the new regulatory framework can be put to best use to improve the things that really matter to a large and increasing number of people, who often find themselves in more disadvantaged and vulnerable circumstances. This document sets out our early thinking on our approach to ensuring not only that services for older people, people living with dementia, and their carers reach basic standards of quality and safety, but also improve. It sets out some priority actions for CQC to take to ensure that, working with others, we can make a difference to services for older people and people living with dementia. It is supported by a briefing note (appendix 1) which sets out the policy landscape and some information about what we know about services in this particular field of care and support. How we developed this plan As well as reviewing the information we have about the performance of services and reviewing some of the recent reports that have been produced about services for older people and people with dementia, we also engaged directly with older people, adults of various ages living with dementia, family carers, key stakeholders with an interest and expertise in care and support for older people and dementia care to help develop our thinking. We have aimed to focus on what matters to the people who use the services we regulate and to give a clear direction to our work with regards to older people, people of all ages living with dementia, and their carers as we go forward. What people told us We sought views from a variety of people in the following ways: We went to existing meetings to ask for people s views, such as the Alzheimer s Society s Living with Dementia group. We held a specific event for older people and carers. Those who attended had a variety of experience including being involved in the Experts by Experience inspection programme, Age Concern and Help the Aged Speaking Up For Our Age forums, local involvement networks, etc. We held a specific event for national stakeholders such as health and social care providers and commissioners, government departments, policy and campaigning bodies, professional Royal Colleges, etc. We used existing contacts and networks to gather further comments by and telephone. CQC Position statement and action plan for older people 4

5 We asked for views on a number of questions: 1. What gets in the way of ensuring good quality care for older people and people with dementia? 2. Where does CQC need to focus its efforts over the next five years to really make a difference to care and support for older people and people living with dementia? 3. How can CQC improve or change to really address the things that matter to older people and people with dementia who use services? What should we be measuring that would really make a difference to older people? 4. How should CQC involve older people and people with dementia in developing, implementing and monitoring our position statement and action plan? 5. How can stakeholders contribute to CQC s work and its strategic priorities? General messages from people Table 1: People s responses to our questions Where does CQC need to focus its efforts over the next five years to really make a difference to care and support for older people and people living with dementia? Workforce and leadership issues Training is fundamental communication, awareness and understanding, involving people, etc. Attitudes are critical, not just training. Management and leadership staff culture cascades from the top down. CQC should check the impact on quality of care when management changes. Training of CQCs inspectors is very important. Include staff views and ask questions such as: Would you like your relative to live in this care home? Basic care and quality of life Many services still fall short on the basics personal care, prevention, safety, activity and stimulation, access to outdoors, dignity and respect. They need to get up to basic standards to start with. Nutrition, hydration and continence are key areas for concern in all settings they really show if someone is treated with dignity and humanity or not. Need to look at aspects such as access to culturally sensitive meals. CQC Position statement and action plan for older people 5

6 There are some homes with an excellent rating, but people don t have access to outdoors (stakeholder). Look at the culture in the (care) home, helping people to enjoy life rather than just waiting for them to die (stakeholder). The staff just don t understand us. You don t get on well in hospital if you ve got dementia (older person living with dementia). The standard was just appalling. They were left without food and drink, even when right next to the nurses station where they could be clearly seen. Everyone just ignored him (wife and carer of someone living with dementia). Access to information Domiciliary care Don t forget the needs of younger adults with early onset dementia Joint commissioning People are still not aware of their rights or entitlements. Be more proactive spreading information don t rely solely on leaflets and call centres. CQC should look at how service providers provide information and empower older people and people with dementia and their carers to complain when they find services less than acceptable. CQC must review how they get an accurate picture of the quality of care and support given to people by home care and community health services. It s not easy fear of reprisal is a real barrier to people complaining, and it s harder to actually observe what is going on in someone s own home. Older people and people with dementia can be in the most vulnerable of circumstances if they live at home alone. They can feel the most disempowered to speak up. Families and carers do things they feel they shouldn t be doing because there s no alternative. We just don t use home care anymore because it was just so awful (wife and carer commenting on coping by herself to care for her husband with early onset dementia). People with early onset dementia feel overlooked, excluded, forgotten. The high profile being given to dementia is welcomed, but younger people feel they still often fall between the cracks, as the majority of care and support is aimed at older people. Effective joint commissioning is key to the availability of, and access to, care and support. CQC should focus CQC Position statement and action plan for older people 6

7 on this (including the use of non ring fenced funds) with a focus on quality not just the cost. Joined up care CQC should follow the pathway model and see how the whole of the care network is joined up to deliver the best care possible. This should include, for example, looking at primary care trusts input into the care of people in care homes. How can CQC improve or change to really address the things that matter to older people and people with dementia who use services? Place more value on people s experience and views More unannounced inspection visits and at varying times of day More robust, speedy action to be taken against services performing badly Continuation and expansion of Expert by Experience programme but to be used with more consistency Place more emphasis on the experience and views of people using services and carers. What people feel about the place they live in or the care and support they get should be paramount. Bring carers/user voice into the decision making process by looking at how the home involves the families in decision making. Engagement process should be responsive and empowering for those using services they know who to turn to with concerns, feel confident and enabled to complain. Services put additional effort into their care and support, staffing and environment in order to impress resulting in an unrealistic picture of the day-to-day service people experience. People want on-site visits to hospital wards but they should be unannounced, including weekends and nights. Visits to care homes should routinely include weekends and night time visits. We know someone must be coming today because it s not normally like this (a comment commonly heard by one Expert by Experience when visiting care homes). Must have real teeth; show providers CQC will not tolerate poor practice, neglect or abuse. Be seen to be tough and act quickly. Highly valued for its independence and extra insight it provides. Inspectors lack the time to talk to enough people using services and staff, and are more constrained than the Experts. Older people and people with dementia, in particular, feel they can open up more honestly to Experts by Experience who they see as less of an authority figure. Expanding the program into hospital wards would be highly valuable. Using experts CQC Position statement and action plan for older people 7

8 as mystery shoppers to domiciliary care agencies would be worth exploring. Value of questionnaires is limited. Should talk to as many people using the service (and families and staff) as possible, not just a sample of 2 or 3. Recruitment and training of Experts by Experience should be widened to ensure program is fit for purpose across heath and social care. The programme is not used as often as it should be. And there are inconsistencies in how inspectors use Experts by Experience. People with dementia would welcome being involved in the programme and this option being used more. Need to form good, consistent working relationships with local involvement networks (LINks) 1 in order to gather rich local information about services and people s experiences Continuation and expansion of the Short Observational Tool for Inspection (SOFI) CQC must make the most of its unique position to break down the barriers between health and social care There are opportunities to gather important information from LINks. We need a two-way reciprocal, standardised relationship with LINks across the country. This would complement independent lay involvement of Experts by Experience. With resource constraints, CQC must make the most of all options, and build better relationships with smaller local voluntary sector groups and advocacy services. SOFI is very valuable. It could also be used to observe practice with older people more generally. Certainly could be used in hospital settings. (A second edition of SOFI is being developed which can be used in a range of health and social care settings.) Inspectors should focus on observation of meaningful activities, stimulation, and engagement with other people and surroundings. Older people, and people with dementia, are often ignored and only essential tasks are done to or for them. People struggle when their care has to shift between services, or when a large number of different people are involved in their care. Particular concerns are: being discharged from hospital without proper planning or involvement, no care plans or essential equipment or support being in place, failures to share discharge info with GP, care home or care agencies involved; lack of coordination between care home and other services (such as GPs, dentists, chiropodists, hospitals, district nurses, etc); people in care homes no longer able to access community or social activities. Keen for CQC to look at GP practices and how they work with carers. 1 The Government has announced plans to introduce Healthwatch to replace LINks. CQC Position statement and action plan for older people 8

9 CQC has an important role to play in sharing good practice that others can learn from CQC should work with the stakeholders Measuring what matters and reporting Concern that publications might be too diluted to cater for all audiences. Could CQC produce some service specific products to share good practice and lever improvements among peers, e.g. share good practice examples from excellent performing care homes with other care homes so they can learn how things might be done differently, or share examples of how some hospitals have turned round performance on certain issues so that others might learn from that lesson, etc. Other bodies have a remit to spread good practice, but CQC has gravitas and weight behind it to really create change. CQC could also help disseminate good practice by acknowledging such practice when they see it e.g. My Home Life a programme looking at quality of care and quality of life for people in care homes. Could CQC distil the new essential standards of quality and safety into an easier to read format for the public so that older people and people with dementia can clearly understand what they are entitled to from health and social care services? Note: An easy read version of the new essential standards of quality and safety is available on the CQC website. Perhaps CQC could pair poor services with excellent ones to cross fertilise learning. Stakeholders can provide us with many opportunities to improve our regulatory functions such as: Work together on cultural changes Build peer support through local networks Raise older people s expectations and empower them through access to the right information Bring to the attention of CQC differences in commissioning and service quality thus helping us to target the poor performers Help CQC develop outcome measures on how to quantify the quality of care including the use of work already done by the stakeholders Support involvement with people who use services and their carers Stakeholders can provide a broader picture beyond health and social care. Need to focus on safety and quality information including the lived experience. Need to focus on good as well as poor. Readmissions to hospitals. Complaints/comments/compliments. CQC Position statement and action plan for older people 9

10 Need to have clear mutually agreed statements of success. Quality and risk profiles are a good idea and dials reporting on particular outcomes are better than overall quality rating. Need to report on joined up pathways and avoid health and social care divide. Need to be transparent on what information is collected and how it is used. How should CQC involve older people and people with dementia in developing, implementing and monitoring our position statement and action plan? No options for involvement should be discounted Regular standing reference group involving key stakeholders, similar to that already established for mental health and learning disabilities. Preferences for a static membership or a floating membership were split. There is considerable support and enthusiasm from the stakeholders to work with CQC for the purpose of improving care for older people and people with dementia. CQC needs to keep talking and listening to us improvement boards were a good idea. CQC should hold an annual conference. Create a table of the special interests or topics of Experts by Experiences, so CQC can use them when required for particular pieces of work. A smaller reference group consisting only of people with dementia, and their carers/partners if they wish, to be used on a regular basis or on a more ad hoc basis to comment on particular pieces of work. Use all media available; do not rely solely on the internet or questionnaires. Face-to-face is always preferable. People must be well informed in advance of what is expected of them from their involvement in our work. People need feedback about what has happened as a result of their involvement. Sometimes we get tired of speaking out because we don t see any difference. We don t know what has changed. It needs to be changes on the ground for us, not just big statements. (person with dementia) CQC Position statement and action plan for older people 10

11 What does the Care Quality Commission need to do? As noted above, CQC has identified five strategic priorities which will guide its work over the next five years. The information generated through various engagement exercises with older people, people with dementia, and their carers has helped us to think about what taking forward these priorities might look like for older people s services and dementia care. In taking forward these priorities CQC will draw on the powers available to it. There are a number of activities that we will undertake in regulating health and adult social care. Our core functions include: The registration of health and social care providers to a common set of standards of quality and safety, and checking ongoing compliance with these registration requirements. Powers of escalation and enforcement where services fall below essential quality standards. Visiting patients whose rights are restricted under mental health legislation to ensure their rights are protected. Carrying out periodic reviews of the performance of providers and commissioners (assessments of quality) in adult social care. Undertaking special reviews and studies of particular aspects of care. Publishing information to drive choice, change and improvement. For the first time, we will be able to use a common set of requirements when regulating the quality and safety of health and social care providers. We have ensured that the detail of our system for registration is focused on outcomes for people using services, promotes their rights and ensures that care is delivered in a way that is person centred. This will be particularly important given what we have heard about some service failures to meet basic quality of care standards. We will also be ensuring that listening to the voices and experiences of people who use services is embedded across all of our activities. In the section below we set out how we will use the powers we have to seek to effect change and improvement for services for older people, people with dementia, and their carers and how these relate to our strategic priorities. In doing so we need to be realistic about what we have the capacity to deliver as CQC embeds its new ways of working, makes best use of its resources and also to ensure that the actions we identify are capable of delivering the improvements we seek. CQC Position statement and action plan for older people 11

12 What we will do On the basis of this consultation and previous reports, we have identified three key areas for improvement where CQC would like to make a difference over the next five years. These are: Ensuring that the care of older people and people with dementia becomes more people centred, including a greater focus on person centred care plans. Ensuring that older people and people with dementia receive care that meets essential standards of safety and quality. Improving the commissioning of services for older people and people with dementia. We have also identified that there are two key enablers which will help CQC and partners to effect change in this field. They are: Improving the information and intelligence we have and making sure it is more widely available in the system. Building our capability as an organisation to understand the issues and services for older people, including people living with dementia, and developing our capacity to engage with older people and people with dementia who use services and their carers. Tables 2 and 3 below set out how we will use our functions to pick up issues and concerns raised with us and what actions over and above this we might take to increase the potential for this work to have impact. We have suggested some process measures intended to help evaluate the progress of this work. An internal steering group has been established to look at dementia care in particular and we envisage forming a similar steering group to further develop the action plan and agree a framework for monitoring delivery. Progress will be reviewed and a report made to the Board in 12 months time. Table 2: Actions to take forward enabling activities Enabling activities Improving the information and intelligence we have and making sure it is more widely available in the system Specific actions Work with the Department of Health/Information Centre to enhance the information available to CQC and others, including for example the potential to use findings from the Adult social care survey and Carers survey being developed by the Information Centre and dementia metrics being developed to support the implementation of the National Dementia Strategy. Measures Information CQC holds is relevant, up to date and used effectively Better working relationships established with LINks, and other local groups such as local CQC Position statement and action plan for older people 12

13 Explore the potential to influence national indicators to include measures relevant to older people with long term conditions and people with dementia. In accordance with the principles laid out in the CQC strategy Voices into Action we will be following best practice in involvement. Making sure our work on hearing the voice of people using services is effective across all sectors and all user groups. Alzheimer s society groups. Increased use of our webform by local groups enabling them to share their comments or concerns about local services Relevant information from Mental Health Act commissioners visits is made available Building our capability as an organisation to understand this particular area of care and support and our capacity to engage with people using services and their families Ensure relevant content about care of older people and dementia care is in cross-sector training topics for the field force and provide relevant policy updates to operations staff. To develop an advisory board similar to the mental health and learning disability advisory boards to ensure the delivery of this action plan and forum for discussing relevant issues. Establish a smaller reference group comprised of people living with dementia and their carers to help monitor delivery of this action plan. CQC s quality and risk profiles mirror what local people experience and say Training and policy briefing delivered and evaluated Increased awareness among staff of issues relating to older people and people with dementia Advisory board meeting regularly with clear reporting lines to the Executive Team and Board People with dementia including those with early onset dementia feel equally involved with our work and able to contribute to our action plan CQC Position statement and action plan for older people 13

14 Table 3: Actions against strategic priorities Top five CQC priorities Specific actions Measures Ensuring care is In assessing services compliance with Improvements over centred on registration requirements, for services time in compliance people s needs specifically for older people and people with these regulations and protects with dementia as well as mainstream and accompanying their rights services, these regulations will be standards particularly important: Reg 9 care and welfare of people who use services (including end of life care) Reg 11 safeguarding people who use services Reg 13 management of medicines Reg14 meeting nutritional needs Reg 17 respecting and involving people who use services Reg 23 supporting workers Develop supporting notes on communicating with people with dementia and on meaningful activity and stimulation to complement the essential standards. Involve older people and people with dementia and family carers in our programme of experts by experience. Supporting notes published and accessed by staff and providers Levels of involvement increased. Older people s concerns reflected Develop observational tools and prompts Improved robustness for assessment of compliance with essential of the information standards of quality and safety, including gathered on people s nutrition and safeguarding. Further develop experiences of care the Short Observational Tool for Inspection through the use of (SOFI) in conjunction with Bradford observation tools University. The second edition (known as SOFI 2) will be linked to the essential standards and will be a more flexible tool which can be used in a range of health and social care settings. The tool will capture the experiences of people who have cognitive or communication difficulties which affect their capacity to voice their opinions about the services they receive by other means. We will audit the use of the tool across the regions. Contribute to the development of dementia care mapping tool for acute settings being led by Bradford University. CQC Position statement and action plan for older people 14

15 Championing joined up care Continue work on the special review of healthcare needs of people in care homes and the pathway review of people who have had a stroke, ensuring that there is robust follow up to the findings of the reviews. Explore how we might link data on care homes to Hospital Episode Statistics (HES) data to identify where a lack of joined up approaches is having a negative effect on an individual s care and wellbeing. Develop our commissioning assessment over time with a focus on ensuring care is personalised and delivering care close to home for older people and people with dementia, particularly those with complex and long term needs. Work with the councils as they develop their plans for the extended remit as described in the white paper for the NHS, including the potential to look at the effectiveness of joint working through this route. Development of a new pathway tracking tool to monitor providers ongoing compliance with registration outcomes, such as cooperating with other providers and involving people using services. Review delivered with clear supporting action plan Older people with long term conditions should experience fewer unplanned emergency admissions to hospital or residential care. More older people with long term conditions should be supported appropriately to live at home with greater independence. Commissioning assessment developed to pick up these issues more robustly and accurately. Information effectively triangulated with what local people using services tell us. New pathway tracking tool piloted in June Aim to roll out the tool fully from October 2010 Acting swiftly to eliminate poor quality care Building better intelligence and information into quality and risk profiles (QRPs), which reflect the concerns in the sector, including the use of information from third parties such as LINks, local voluntary sector groups, etc. Making sure our risk processes are structured so that they are able to identify poor quality care in specialist services and residential care, and that appropriate improvement actions are in place. Sector relevant QRPs developed and delivered Resources identified and inspection delivered CQC Position statement and action plan for older people 15

16 Promoting high quality care Regulating effectively, in partnership Proportionate use of enforcement powers where services fail to comply with essential standards. Making use of CQC engagement initiatives to promote discussion at senior NHS and local authority level about the quality of older people services and dementia care. Become active partners in the national boards such as the Department of Health (DH) Dignity partnership board and DH dementia programme board, liaise with key people involved in the Older People and Prevention Programme and use these as opportunities to share relevant information and intelligence in both directions. End of life care is included in our essential standards of safety and quality. We will seek information from the registration framework and the QRP process to inform our future work to develop the content of assessments in this area. It is also encompassed in the reviews focused on healthcare needs in care homes and stroke care pathway. We will work closely with National Council of Palliative Care and the NHS End of Life Programme to influence their work and align it with our regulatory framework. Work with other relevant bodies including, for example, National Audit Office, Monitor and HM Inspectorate of Prisons to ensure that their work supports and complements our regulatory approaches and to reduce the burden on the sector. This involves influencing their work to ensure that their findings are suitable for use in our QRP and other intelligence mechanisms and appropriate joint working. Work with other bodies such as the Social Care Institute for Excellence, Royal College of Nursing, etc to develop tools for audit with a view to improving services for older Publish successful enforcement action Reduction in proportion of services that are noncompliant Meetings take place and support engaged for CQC activities Regular attendance and influence at meetings. Relevant information cascaded to operations and CQC s other directorates End of life care features, where appropriate, in ongoing compliance monitoring and issues emerging from special reviews are identified and considered CQC is appropriately positioned and involved. CQC is effective in influencing other organisations products and approaches and these are compatible with our regulatory model. CQC Position statement and action plan for older people 16

17 people and people with dementia such as the Nutritional tool etc. Share information and engage with other agencies involved in responding to abuse of older people in regulated services under local multi-agency procedures. Priorities for the first year While the action plan covers what CQC will do over five years, in the first year following publication of the plan we will focus on the following as priorities: Getting the basics right through registration ensuring that regulated services for older people and people living with dementia meet essential standards of safety and quality. Developing and implementing observational methodologies including SOFI 2 to ensure that we capture the experiences of people who have cognitive or communication difficulties which affect their capacity to voice their opinions. Completing our special review of healthcare in care homes, which we anticipate will highlight issues in relation to older people and people living with dementia and follow up on the findings. Developing policy briefings and focused additional guidance for operational staff to ensure awareness of relevant issues for older people and people living with dementia. Establishing a new older people s advisory board and smaller dementia reference group to actively engage with stakeholders and people who use services so that they can inform and influence our work. CQC Position statement and action plan for older people 17

18 Appendix 1 Background and briefing paper Key statistics People in the UK are living far longer than ever before, thanks to medical and social advances, better housing and diet, among other contributing factors. While there are approximately 10,000 people aged 100 or over now, by 2050 there are projected to be around 250,000 people of that age. Male life expectancy at the age of 65 has nearly doubled since We are experiencing a demographic phenomenon whereby for the first time ever, the number of people over state pensionable age is greater than the number of children under 16. And for the first time in 25 years, the old age support ratio has begun to tip in the opposite direction meaning that the number of adults aged is now decreasing in comparison to the rising number of people aged 65 and over 2. People with physical disabilities and learning disabilities are also now experiencing longer lives thanks to medical advances, and with this comes the potential increased likelihood of needing support and care into later life. In addition, the latest figures from the Alzheimer s Society suggest there are now approximately 750,000 people living with dementia in the UK, including over 16,000 younger adults, with the total numbers predicted to rise to over 1 million by Older people tend to make up the majority of those with the most frequent and high intensity care and support needs, at the highest cost, because of the multiple health conditions and complex social care needs that can build up in later life, particularly for those who have a long term condition. People living with dementia, of whatever age, may also be more likely to require support and care from across health and social care services as their condition and circumstances change over time. Overview of the policy landscape The overall context and direction of public policy for older people, as for other citizens, is one that promotes independence, well-being and choice through personalised support and care, as close to home as possible. The direction of travel from Government, for a number of years now, has been to transform public services so that they are built around citizen s needs and aspirations. The Putting People First Ministerial concordat and protocol (2007) 4, established collaboration between central and local government, the social care sector s professional leadership, providers and the regulator to radically change people s experience of social care. It set out shared aims and values to guide the transformation of adult social care, working with people using services and carers. There was considerable synergy between the Putting People First concordat and Lord Darzi s High quality care for all: NHS Next Stage Review 5, which came later in It 2 Office for National Statistics figures in HM Government, Building a society for all ages, Figures publicly quoted as of April ce/dh_ (and the resource website at publicationspolicyandguidance/dh_ CQC Position statement and action plan for older people 18

19 was noted that the need for transformation and change within the NHS was largely driven by demographics. Our ageing population poses significant challenges for maintaining and developing a national health service that is fit to meet the needs of our future society. Older people over 85 years of age are, on average, 14 times more likely to be admitted to hospital than the average 15 to 39-year-old, and 60% of over 65s have at least one or more long term condition. For older people using health and social care services, these two milestones brought together and built upon the foundations laid by policy developments through a number of important documents over the years, described below. The National Service Framework for Older People (NSF) (2001) is a key part of the framework for assessing the provision of health and social care for older people in England. Following his interim review of the NSF in 2006, the former National Clinical Director for Older People, Professor Ian Philp, set out three themes for his new ambition for old age 6 : Dignity in Care, Joined-Up Care, and Healthy Ageing. Shortly after, the Minister for Care Services issued a dignity challenge 7 with the aim that older people and their families would have confidence that in all care settings, older people would be treated with respect and their dignity and human rights would be upheld. Our Health, Our Care, Our Say. A New Direction for Community Services, the White Paper published in 2006, identified some key goals to underpin the Government s reforms in health and social care: Better prevention and early intervention for improved health, independence and well-being resulting in a strategic shift supported by robust cost-benefit analysis, increased self-care and more people supported to live in their own homes. More choice and a stronger voice for individuals and communities with people having better access to information and more say about how support is delivered, more influence over the shape and delivery of local services and greater satisfaction with their overall experience. Tackling inequalities and improving access to services resulting in more services to promote emotional health and well-being, better outcomes following hospital discharge, better support through new technologies to prevent unnecessary admissions, an improved range of services for urgent care and local health and social care communities working together to address inequalities. More support for people with long-term needs with people and their carers receiving supportive services that respond to their preferences in a location convenient to them. Opportunity Age, which was published in 2005, set out the Government s strategy for an ageing population, aiming to end the perception of older people as dependent; ensure that longer life is healthy and fulfilling; and that older people are full participants in society. The Audit Commission s corporate assessment monitored progress in 6 nce/dh_ DH Dignity in Care web page CQC Position statement and action plan for older people 19

20 delivering the overall strategy by local government but its special study, Don t Stop Me Now 8 (published in July 2008) found that only a third of councils were well prepared for an ageing population, although a further third were at least making some progress. The report highlighted the challenges that local public services face in planning strategically to meet the needs of an older, more diverse, population but also made recommendations to assist local councils to address those difficulties, including: Review local demographic profiles and reassess their approach to the ageing population. Identify how to work with older people and local partners more directly to make more efficient use of resources. Age-proof mainstream services and design targeted services by linking local demographic profiles and community needs. Tackle stereotypes and myths that prevent older people being fully engaged in the local community and accessing appropriate services. Target spending to where it can have most impact, and improve the process of evaluation. Carry out a management review, or councillor scrutiny, of local support for well being in later life to plan a way ahead. In response to these shortfalls and further prompted by our ageing population, the Government s ageing strategy was revised to better address the needs of modern society Building a society for all ages 9 was published in July 2009 and set out a vision for a society for all ages, with shared responsibility between individuals, communities and the state working together to ensure older people live longer, healthier, more independent and active lives, where people are not judged by their age but by their capabilities and needs. This was accompanied by a Department of Health prevention package for older people 10 launched in July The aim of this package was to: Bring together information on existing health entitlements, e.g. sight tests, flu vaccinations, cancer screening, etc. Promote best practice around falls prevention and management of fractures. Introduce measures to improve access to affordable foot care services. Update national guidance on intermediate care. Summarise existing progress on telecare and audiology. The evaluation of the Individual Budgets pilot programme 11, which involved 13 local authorities over a two year period ( ), raised some serious points with regards to enabling older people to take equal advantage of more personalised, self directed support. People receiving Individual Budgets were found to be more likely to feel in control of their daily lives but satisfaction and psychological well-being was found to be lowest among older people taking part in the pilot programme. This could be because Olderpeople/Preventionpackage/index.htm 11 PublicationsPolicyAndGuidance/DH_ CQC Position statement and action plan for older people 20

21 they felt the process of planning and managing their own support were burdens. The Department of Health agreed to carry out further research into the longer term costs and outcomes of Individual Budgets for older people. (The lessons learnt from these with regards to social care support for older people will need to be translated across to the use of personal health budgets to ensure that older people are enabled to access and use such initiatives equally for their health care too). One example of the recognition that the needs of older people spread further than just the responsibility of health and social care, was the Government s Lifetime Homes, Lifetime Neighbourhoods: A National Housing Strategy for an Ageing Society 12, published in February 2008 by the Department for Communities and Local Government. The strategy highlighted ageing as a serious public issue and a priority for housing and planning, stimulating debate about the sustainable transformation of public and private housing for older people. It also highlighted initiatives such as Lifetime Neighbourhoods that cater for residents of all ages as well as specialist accommodation. There has also been a significant shift in attitude to finally tackle age discrimination within health and social care services. In October 2009 a review was published on the age discrimination and age equality within the sector, considering what reforms might be required to support greater age equality 13. The review s findings have fed into the single Equality Bill on how health and adult social care organisations will implement the ending of unjustifiable age discriminatory practice in the provision of services. To help champion and spearhead change in care and support for older people, the Department of Health appointed a new National Clinical Director for Older People, Professor David Oliver, in April Aging well a new programme recently announced (July 2010) by the coalition government is aimed at providing better quality of life for older people through local services that are designed to meet their needs. The programme also recognises the huge contribution made by older people themselves. An essential aspect of the programme is to help local authorities to improve efficiency while still delivering quality services. With regards to policies more specifically focused on care and support for people with dementia, the profile and priority has certainly risen up the national agenda in recent years, largely as a result of the recognition of demographic changes noted above. However, while ageing remains the most significant risk factor for dementia, it needs to be recognised that a small, but still significant, proportion of younger people under the age of 65 are affected by early onset dementia and this group of people often experience additional difficulties in accessing appropriate services 14. People with Down s Syndrome and those affected by substance misuse problems are also at higher risk of some forms of dementia. Dementia is now the strongest determinant for admission into residential care (Alzheimer s Society 2007) and older people with dementia, regardless of their living arrangements, are at increased risk of physical health problems. People living with dementia, and their carers, often find themselves in need of a wide variety of support and care spanning across health and social care services and, therefore, the need for PublicationsPolicyAndGuidance/DH_ Estimated over 16,000 people under the age of 65 in the UK. CQC Position statement and action plan for older people 21

22 truly joined up, effective partnership working at a local level is particularly relevant for meeting the needs and aspirations of these individuals. Some of the reports that have focused on dementia in recent years, raising the profile of dementia and its consequences for individuals, families and society as a whole, include: the National Audit Office s Improving services and support for people with dementia (2007); Alzheimer s Society s Dementia UK (2007); Alzheimer's Society s Home from Home (2007); Alzheimer s Society/Mental Health Foundation s Dementia: out of the shadows (2008), and the Alzheimer s Society report on caring for people with dementia on hospital wards, Counting the cost. Some key messages drawn from these publications include: Too few people receive a formal and timely diagnosis, which results in poor access to appropriate support, care and treatment for the individual and carer. Early interventions can be cost effective but are not widely or consistently available. Care and health staff often lack awareness and understanding of dementia including GPs, acute hospital nursing staff, and residential care workers. About two thirds of people with dementia live at home in the community and are cared for by unpaid carers, often a spouse who may themselves be older with their own health or care needs. Carers often lack the support and recognition they need to enable them to continue. People caring for someone with dementia are at higher risk of poor mental health themselves as a result. Older people and people with mental health needs remain low in the take-up of self-directed support options such as Direct Payments. People need more appropriate information and support to gain equal access to options that can give them choice and control if they wish. Integrated, multi-disciplinary specialist services are still variable across the country and access to them is still patchy. For example, memory clinics are still inconsistent and limited, appropriate respite care and day hospital services are still hard to access, and in some areas there is still no clear, jointly agreed, assessment and care management process across health and social care. Dementia is often unrecognised in care homes and needs are left unmet or not addressed in a person-centred way that takes account of social and emotional needs. 15 Without access to external specialist support and advice, such as from specialist older people s mental health teams, people may find themselves having to move from a home, sometimes unnecessarily. People with dementia often receive inadequate, inappropriate care in hospitals, which can result in symptoms getting worse, avoidable use of antipsychotic medications and potentially avoidable admissions to care homes. In response to the growing awareness of dementia as a key national issue and increasing pressure from campaigning groups, the Department of Health published the first ever National Dementia Strategy: Living Well with Dementia 16 in February The strategy prioritised three key themes requiring urgent attention: 15 Alzheimer s Society, Home from Home. Quality of care for people with dementia living in a care home, Findings from this report suggest that 2/3 of care home residents have some form of dementia but only 60% of these people will be in registered dementia placements PublicationsPolicyAndGuidance/DH_ CQC Position statement and action plan for older people 22