Alzheimer s Society. Consultation response. Our NHS care objectives: A draft mandate to the NHS Commissioning Board.

Transcription

1 Alzheimer s Society Our NHS care objectives: A draft mandate to the NHS Commissioning Board 26 September 2012 Delivering Dignity Securing dignity in care for older people in hospitals and care homes: A report for consultation Consultation response 1

2 1. Key points Alzheimer s Society welcomes the draft mandate and believes that it can help to drive a culture which puts people with dementia at the heart of everything the NHS does. The Society welcomes the recognition given to dementia as a complex condition in the ageing population. Given the commitment from the highest government level to drive improvements in health and care for people with dementia, Alzheimer s Society recommends that dementia retains this recognition throughout the mandate. Objectives in the mandate support the ambitions in the Prime Minister s challenge on dementia. To further support the Prime Minister s challenge on dementia, there should be an objective to improve diagnosis rates for people with dementia by Alzheimer s Society recommends that two-thirds of people receive a formal diagnosis. As core users of health and social care services, integration is vital for people with dementia and Alzheimer s Society particularly welcomes the objective on joint commissioning. There is still a need for independent advocates to support vulnerable groups of people to make choices about their care. Evidence in Dementia 2012 (Alzheimer s Society, 2012) highlighted that carers need access to specific information in order to carry out their caring role. 2. Alzheimer s Society Alzheimer's Society is the UK's leading support services and research charity for people with dementia and those who care for them. It works across England, Wales and Northern Ireland. The Society provides information and support for people with all forms of dementia and those who care for them through its publications, dementia helplines and local services. It runs quality care services, funds research, advises professionals and campaigns for improved health and social care and greater public awareness and understanding of dementia. 3. About dementia There are 800,000 people with dementia in the UK. This is forecast to increase to over a million by One in three people over 65 will end their lives with dementia. 2 1 Alzheimer s Society (2007, updated to reflect 2012 figures) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London. 2 C Brayne, Lu Gao, M Dewey, FE Matthews (2006) Dementia before death in ageing societies the promise of prevention and the reality. PLoS Medicine 3(10): e397. 2

3 Dementia is a complex condition and people will require a broad package of care from a range of agencies across health and social care. Dementia is a progressive condition, which means that people with dementia and their carers are coping with a changing pattern of abilities over time. As the disease progresses, people with dementia will need more support. Eventually, they will need help with all their daily activities. People with dementia may also face difficulties with communication which means they may be unable to express their needs and wishes without support. People with dementia are core users of health and social care services: Two thirds of people with dementia live in the community. Some will be in the early stages of the condition, some will be in the later stages or at end of life. 3 One third of people with dementia live in care homes. Two thirds of care home residents will have a form of dementia. 4 Up to one quarter of hospital beds are occupied by people with dementia aged over 65 years at any one time. 5 Currently in the UK, only 43% of people with dementia have a formal diagnosis (Alzheimer s Society, 2011) 6. Moreover, diagnosis rates are variable across the country. For example, 67% of people in the London Borough of Islington receive a diagnosis, but only 27% in Dorset. Without a formal diagnosis, it is very difficult for a person with dementia to make appropriate choices about their health and care. 4. Policy context Prime Minister s challenge on dementia The government has committed to improving the health and care of people with dementia with the Prime Minister s challenge on dementia. The Challenge aims to go further and faster in delivering the aims of the National Dementia Strategy by driving major improvements in dementia care and research in England by The Challenge has three workstreams: Driving improvements in health and social care Creating dementia friendly communities Better research 3 Alzheimer s Society (2007 ) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London. 4 Alzheimer s Society (2007) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London. 5 Alzheimer s Society (2009) Counting the cost: caring for people with dementia on hospital wards. Alzheimer s Society: London. 6 This is a proxy measure sourced from the best evidence available. It is based on a comparison between dementia prevalence rates and the number of people with dementia on GP registers (from the 2010 NHS QOF indicator DEM1) used as a proxy measure of how many people have been formally identified as having dementia. 3

4 The objectives in the mandate support the commitments in the Prime Minister s challenge on dementia to drive improvements in health and care for people with dementia. Living well with dementia: a National Dementia Strategy Living well with dementia: a National Dementia Strategy 7, published in February 2009, sets out 17 objectives designed to support people to live well with dementia. Although progress had been made on the objectives, it was clear more work had to be done which lead to the Prime Minister making a personal commitment to improving dementia care with the Prime Minister s challenge on dementia. 5. Consultation questions 3. Are the objectives right? Could they be simplified and/or reduced in number; are there objectives missing? Do they reflect the overarching goals of NHS commissioning? Alzheimer s Society supports the objectives in the draft mandate and welcomes the specific references to dementia. It is important that the objectives link to the Prime Minister s challenge on dementia, the NHS Operating and Outcomes Frameworks, the Commissioning Outcomes Framework, as well as Public Health and Adult Social Care Outcomes Frameworks. 3.1 Improving diagnosis rates for people with dementia Currently, only 42% of people with dementia in England receive a diagnosis, but the Prime Minister s challenge on dementia includes an ambition to increase diagnosis rates for people over 65. Therefore, Alzheimer s Society strongly recommends that the mandate includes an objective to increase diagnosis rates by 2015 in support of this ambition. The Society recommends that two-thirds of people receive a formal diagnosis. In 2007, the National Audit Office found spending on dementia was often inappropriately focused on the late stage of the disease 8. This results in spending on necessarily more expensive services which are not delivering consistently or cost effectively. Early diagnosis is key to delivering more effective resources - evidence suggests that investing in early intervention services can lead to long-term savings. 3.2 Objective 2 Alzheimer s Society supports this objective which will increase the number of Quality Adjusted Life Years for people with dementia. As well as committing to improving health and care for people with dementia, the Prime Minister s challenge on dementia commits to creating dementia friendly communities which aim to improve the quality of life for people with dementia. 7 Department of Health (2009), Living well with dementia: A National Dementia Strategy. Department of Health: Leeds. 8 National Audit Office, Improving services and support for people with dementia,

5 3.3 Objective 4 Alzheimer s Society welcomes the objective to increase the proportion of NHS patients who rate their experience of good. Evidence from Alzheimer s Society (Counting the cost, 2009) shows that improving the experiences of people with dementia in hospitals is key to improving the NHS overall. 77% of respondents to the Counting the cost survey stated that they were dissatisfied with the quality of care provided. Therefore, any objectives which aim to improve dementia care in hospitals must be seen as positive. However, there needs to be provision to include the views of people who have difficulties in communicating their thoughts. The nature of dementia means that people with the condition may not be able to express their opinions. It is important that ratings are not simply just based on the opinions of carers or family members, therefore, Alzheimer s Society recommends that independent advocates are in place in order to support people from vulnerable groups to make choices about their care. 3.4 Objective 6 Alzheimer s Society supports the objective to ensure continual improvement of health outcomes, as measured by the indicators in the NHS Outcomes Framework. Under Domain 2 of the NHS Outcomes Framework, Enhancing quality of life for people with long-term conditions, a placeholder has been included for the development of a suitable indicator for dementia. Given the government commitment to driving improvements in health and care for people with dementia, the recognition given to the condition in the mandate must be retained. 3.4 Objective 9 Alzheimer s Society supports the objective to develop a collaborative programme of action to achieve the ambition that mental health should be on par with physical health. Dementia must be given recognition in this objective in line with the Prime Minister s challenge on dementia. 3.5 Objective 12 Alzheimer s Society supports objective 12 to enable shared decision-making and extend choice and control for NHS patients, although the Society does have concerns that people with dementia are currently not able to choose even if there are choices available to them. There are numerous reasons for this, but Alzheimer s Society has evidence of projects across the country which enable people with dementia to make choices. For example, in the South West, the local authorities, local NHS and Alzheimer s Society have produced a web-based information service called Our Health. This uses NICE quality standards and other evidence to provide information on the support people with dementia should expect to receive. Our Health describes the different services available across the South West, how they can be accessed and the quality of care they are likely to receive. 5

6 The Prime Minister s challenge on dementia commits to promoting services such as Our Health in the South West right across England. From April 2013 similar information will be available in other parts of the country. Given that this commitment has come from the highest government level, Alzheimer s Society recommends including an extra point in this objective to extend the availability of web-based information services, such as Our Health right across England. 3.6 Objective 13 Alzheimer s Society strongly supports objective 13 and particularly welcomes the recognition that people with dementia would benefit from integrated care through joint commissioning. As the draft mandate states people with dementia are core users of heath and social care services and Alzheimer s Society reiterates the importance of joint commissioning for the integration of care for this group of people. Alzheimer s Society urges that this objective is retained in its current form in the final mandate. 3.7 Objective 14 Alzheimer s Society has long campaigned for good quality information about services. Promoting local information on dementia services is a commitment in the Prime Minister s challenge on dementia. Good quality information on services is vital as information is key to enabling patients to make choices about their care. Furthermore, information about NHS services must be accessible to people with dementia. Evidence from Alzheimer s Society shows that people prefer to receive information in printed format or face to face. 9 Printed information allows people with dementia and carers to read over the information several times and go back to it when necessary. Internet only information is insufficient to meet the information needs of people with dementia as it excludes a significant number of people with dementia who do not have access to the internet. Moreover, some people with dementia may no longer be able to use a computer due to the nature of their condition. Therefore, Alzheimer s Society recommends that the mandate makes clear in its objective that information needs to be accessible to all people. 3.8 Objective 15 Alzheimer s Society supports this objective to improve the support that carers receive from the NHS. Better support for carers is listed as an action in the Prime Minister s challenge on dementia. The information needs of carers are different from those of people with dementia, but it is just as important that carers have access to good quality information in order to fulfil their caring role. Carers of people with dementia are given special mention in the NHS report Innovation, Health and Wealth, which clearly states that the NHS must commission services in line with NICE-SCIE guidance on supporting people with dementia. For this reason, Alzheimer s Society would like to see an 9 Alzheimer s Society (2010), Information needs of people with dementia and carers, Alzheimer s Society, London 6

7 additional point to this objective on providing good quality information to carers. 3.9 Objective 17 Alzheimer s Society supports the objective to ensure that the new commissioning system promotes and supports participation in research. The Prime Minister s challenge on dementia has the ambition to work towards recruiting 10% of patients into clinical trials. There is also an ambition in the challenge that the Department of Health will increase support for capacitybuilding in dementia research, focusing on nurses as well as doctors Objective 21 Alzheimer s Society welcomes the objective to improve healthcare outcomes by ensuring that services commissioned by the Board are of high quality. The health outcomes measured by the indicators in the Commissioning Outcomes Framework highlight the importance given to dementia and that Clinical Commissioning Groups must demand providers deliver good quality dementia care. In Alzheimer s Society s response to the Commissioning Outcomes Framework, the Society highlights that there are currently no available datasets which would allow us to measure indicators which match the objectives of the Dementia Strategy and of the NICE Quality Standards for Dementia which both aim to improve the quality of care and quality of life of people with dementia. Indeed, the NICE Quality Standards are measured against process targets rather than the outcomes focus that the competition insists on, presumably as outcomes measures for dementia will take time to develop. Equally, the dementia metrics developed to support the National Dementia Strategy are only able to provide a partial view of implementation because currently health and social care information that is available nationally on dementia services is very limited and varies in quality. Dementia is a progressive condition, and a positive outcome of a clinical intervention may be a reduction in the rate of decline rather than a positive improvement, a factor which makes it difficult to measure the impact of an intervention. Robust data collection for dementia would allow outcomes to reflect the relevant policy strategies to improve care. 6. Do you agree that the mandate should be based around the NHS Outcomes Framework, and therefore setting separate objectives for individual conditions? Alzheimer s Society does agree that the mandate should be based around the NHS Outcomes Framework. An indicator measuring the early diagnosis of people with dementia is due to be published along with the mandate. This is also in line with the Prime Minister s challenge on dementia. Alzheimer s Society recognises the difficulties in setting separate objectives for individual conditions while giving specific mention to dementia in the 7

8 mandate. The Society has tried to suggest improvements to the mandate without adding more detailed objectives specific to dementia. Nevertheless, Alzheimer s Society recommends that dementia retains specific recognition in the mandate. Currently, there are 800,000 people living with dementia in the UK and this is set to rise to over 1 million by The current cost of dementia to society is 23 billion a year, yet there remain issues regarding the quality of dementia services. As a result dementia has been identified as a challenge by the government, the only condition to have such high level commitment. Therefore, dementia should be the only condition to have recognition in the mandate. 9. Is this the right way for the mandate to support shared decisionmaking, integrated care and support for carers? Alzheimer s Society supports the objective to improve support for carers. However, early identification of carers of people with dementia is dependent on people with dementia receiving a diagnosis. A survey conducted for Dementia 2012 found that almost 50% of respondents felt that their carer is not, or only sometimes, supported to carry out their caring role. Information about caring is essential for carers to manage their role. However, information provision for carers remains inadequate. In the Dementia Tax (Alzheimer s Society, 2009), nearly a third of carers said they had not received enough information about services. The information carers receive not only needs to be specific to the carer, but also to the condition. Peer support provides a source of emotional support for carers. Alzheimer s Society runs Dementia Cafés across the country, which help carers escape social isolation. In addition, online forums, such as the Alzheimer s Society forum, Talking Point, allow people to chat to other carers at any time of the day or night. Therefore, Alzheimer s Society recommends that the mandate includes a point that local authorities need to work collaboratively to provide a range of information, including peer support groups, which are specifically targeted at carers of people with dementia. 7. Conclusion Alzheimer s Society welcomes the draft NHS Commissioning Board Mandate. In particular, we strongly recommend that specific references to dementia are retained in the final mandate. The mandate supports the commitments in the Prime Minister s challenge on dementia and will help to achieve the ambitions stated in the challenge. Alzheimer s Society is willing to work with the Department of Health on the mandate to the NHS Commissioning Board in the future. For more information, please contact: Laura Cook Policy Officer, Alzheimer s Society T: E: laura.cook@alzheimers.org.uk 8