This is an extract from my book ‘Living better with dementia’ by me (Forewords by Prof Alistair Burns, Kate Swaffer, Chris Mason and Dr Peter Gordon), to be published by Jessica Kinglsey Publishers 2015. It comes from the chapter on whole person care (chapter 10).
Acute medicine is ideally suited to the medical model where you make a diagnosis on the basis of investigations, and then you immediately implement a management plan. There should of course be prompt action on acute situations for people living with dementia, but this is rather different to the usual needs of a person trying to live better with dementia. A person with a long term condition “lives with the condition day by day for their whole life and it is the things they do or don’t do that will make the difference to their quality of life and the long term outcomes they will experience” (Royal College of General Practitioners, 2011).
Shirley Ayres (2014) argues in her article entitled “The long term care revolution: a provocation paper” that “people in later life offer wisdom, experience, perspective and a wide range of skill sets and capacities”, reflecting that that long term institutional care is not the correct setting for them. This argument also holds true, perhaps, for people living well with advanced dementia.
The burning question still remains, as it was in the genesis of the first English dementia strategy, how a framework of post-diagnostic support for people living with dementia could best take place in England. I have already discussed earlier in chapter 10 of my book the policy of ‘whole person care’, and the critical rôle of social care practitioners and clinical nursing specialists in a multidisciplinary approach. It is also worth noting that the “year of care” initiative has seen some crystallisation of the approach for living well. It offers a framework that supports delivery of the Domain 2 of the NHS Outcomes Framework ‘Enhancing quality of life for people with long-term conditions’. Through this, it is hoped that ‘far more people will have developed the knowledge, skills and confidence to manage their own health’, but there are clear implications for the implementation of whole person care, namely, “care which feels more joined-up to the users of services”, and “care [which] centres on the person as a whole, rather than on specific conditions” (Year of Care website, accessed December 2014).
There will always be the criticism that self management, rather than having the prime goal of encouraging health and wellbeing, is meant as a ‘cover’ for essential services being cut. Benefits of “self management” which have previously been proposed are, nonetheless, proposed in Box 1.
Box 1. Benefits of ‘self management’ [Source: Royal College of General Practitioners (Clinical Innovation and Research Centre) (2011) (authors: Nigel Mathers, Sue Roberts, Isabel Hodkinson and Brian Karet) Care Planning: Improving the Lives of People with Long Term Conditions]
When people self care and are supported to do this, they are more likely to:
- experience better health and well-being
- reduce the perceived severity of their symptoms, including pain
- improve medicines compliance
- prevent the need for emergency health and social services
- prevent unnecessary hospital admissions
- have better planned and co-ordinated care
- remain in their own home
- have greater confidence and a sense of control
- have better mental health and less depression
Indeed, this policy agenda has been slowly ‘cooking’ for about year. For example, nearly a decade ago, Department of Health (2005) issued its document “Supporting People and integration with Long Term Conditions – An NHS and Social Care Model to support local innovation: Improving Care Improving Lives” had proposed a number of key priority areas, namely:
- To embed into local health and social care communities an effective, systematic approach to the care and management of patients with a long term condition.
- To reduce the reliance on secondary care services and increase the provision of care in a primary, community or home environment.
- Patients with long term conditions need high-quality care personalised to meet their individual requirements.
This follows on from an elegant analysis from one of Derek Wanless’ numerous reports, this time “Securing our Future Health: Taking a Long-Term View” from 2002. This one envisages one scenario for the future involving full public engagement.
Wanless (2002) describes this as,
“levels of public engagement in relation to their health are high. Life expectancy increases go beyond current forecasts, health status improves dramatically and people are confident in the health system and demand high quality care. The health service is responsive with high rates of technology uptake, particularly in relation to disease prevention. Use of resources is more efficient.”
(Derek Wanless, Public Enquiry Unit (2002))
It has become increasingly acknowledged that under this approach, the “care plan” is pivotal. The care plan “should set out the patient’s agreed health objectives and care needs, including what the individual can contribute towards their own self care, and what each professional and agency will do to help them meet these. It will include preventive and health promotion actions (such as avoiding accidents, reducing infection or nutrition).” (Department of Health, 2005).
In a pamphlet from the King’s Fund (2013), entitled “Delivering better services for people with long-term conditions”, the authors, Angela Coulter, Sue Roberts and Anna Dixon describe a co-ordinated service delivery model – the ‘house of care’ – that incorporates learning from a number of sites in England that have been working to achieve these goals.
They describe that the “house of care” model differs from others in two important ways:
- it encompasses all people with long-term conditions, not just those with a single disease or in high-risk groups;
- and it assumes an active role for patients, with collaborative personalised care planning at its heart.
This model is a system innovation, as applied to dementia, as it proposes a shift in power from professionals to persons living with dementia play an active part in determining their own care and support needs. Such an approach, it is hoped, would respect autonomy dignity, promote independence and offer maximum choice and control for need help from the health and care systems. The philosophy of “whole person care” moves the NHS towards an integrated health and care system, which is concerned about individuals during health as well as disease, a critical time when the coordination between the NHS and social care could not possibly be worse.
Self care is about individuals, families and communities taking responsibility for their own health and wellbeing. It includes actions people take in order to stay fit and maintain good physical and mental health, meet their social and psychological needs, prevent illness or accidents and care more effectively for minor ailments and long term conditions.
Both dementia and diabetes mellitus can be viewed as disabilities, and each may be a co-morbidity of the other. Sinclair and colleagues (2014) have outlined the key steps in an integrated care pathway for both elements of this clinical relationship, produced guidance on identifying each condition, dealt with the potentially risky issue of hypoglycaemia, and have outlined important competencies required of healthcare workers in both medical/diabetes and mental health settings to enhance clinical care. In the overall construct, people living with a long term condition, disability or a minor illness, as well as carers, can benefit enormously from being supported to self care.
The ‘Common Core Principles to Support Self Care’ aim to help health and social care services give people control over, and responsibility for, their own health and well-being, working in partnership with health and social care professionals (Skills for Care/Skills for Health, 2007) Seven principles have been elaborated. These are shown in Box 2 below.
Box 2. Seven principles to support ‘self care’ [Source: Skills for Care/Skills for Health (2007)“Common core principles to support self care: a guide to support implementation” http://www.skillsforcare.org.uk/document-library/skills/self-care/commoncoreprinciples.pdf]
- Ensure individuals are able to make informed choices to manage their self care needs
- Communicate effectively to enable individuals to assess their needs, and develop and gain confidence to self care
- Support and enable individuals to access appropriate information to manage their self care needs
- Support and enable individuals to develop skills in self care
- Support and enable individuals to use technology to support self care
- Advise individuals how to access support networks and participate in the planning, development and evaluation of services
- Support and enable risk management and risk taking to maximise independence and choice.
The “NICE quality standard for supporting people to live well with dementia: information for the public” is intended to support people to live well with dementia. It sets out how high-quality social care services should be organised and what high-quality social care should include, so that the best support can be offered to people with dementia using social care services in England (NICE, 2013). This has provided a very useful yardstick against which services which purport to improve the quality of life of people with dementia can be judged.
It is, further, reported that the ‘Year of Care’ (YOC) programme was successful in implementing the key features of care planning in diabetes, for example. The YOC Programme has two components, according to ‘Diabetes UK’ (2011). Firstly, it enhances the routine biomedical surveillance and ‘QOF review’ with a collaborative consultation, based on shared decision making and self management support, via care planning; and then it ensures there is a choice of local services people need to support the actions they want to take to improve their health, wellbeing and health outcomes.
People are involved in the care of their diabetes in quite a new way and enjoying it. People are setting personal goals and action plans relevant to their everyday life; take up of education programmes has improved and in very disadvantaged populations, poor attendance rates, biomedical outcomes and service use are also improving.
(Royal College of General Practitioners, 2011)
It is likely that the health and care sectors will seek to engineer the ‘best’ solutions on offer for post diagnostic support, within a framework of ‘whole person care’.
Such solutions might include ‘dementia advisers’, ‘clinical nursing specialists’, or ‘a year of care’. The solutions most appropriate for “living better with dementia” might be drawn, for example, from best practice in other long term conditions, such as diabetes or cancer. The quality of local commissioning, undoubtedly, is going to be pivotal in this. It will be a sensitive policy balance to make the argument that responsibilities of the State are not shunted across to the third sector in an unaccountable or unorthodox manner. But many will argue that there is valid and crucial role for the third sector to play. Actually, the policy imperative for this could not be clearer – many persons living well with dementia report not expecting to see a professional until the end of life phase, having seen one for the initial diagnosis. This is clearly not on if policy truly wishes to promote living better with dementia in England.
Department of Health (2005) “Supporting People and integration with Long Term Conditions – An NHS and Social Care Model to support local innovation: Improving Care Improving Lives”, accessed 6 December 2014,available at: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4965951
Diabetes (UK) “Year of Care: Report of findings from the pilot programme” (date June 2011), accessed 6 December 2014,available at: http://www.diabetes.org.uk/upload/Professionals/Year%20of%20Care/YOC_Report.pdf
Innovate UK (2014) The long term care revolution: a provocation paper. (author Shirley Ayres), accessed 6 December 2014,available at: https://connect.innovateuk.org/documents/15494238/0/LTCRprovocationPaper.pdf/45cf1947-c477-4f21-913e-4eb3f9061aa0
King’s Fund (2013) (authors: Angela Coulter, Sue Roberts and Anna Dixon, October 13) “Delivering better services for people with long-term conditions”, accessed 6 December 2014,available at: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/delivering-better-services-for-people-with-long-term-conditions.pdf
NICE quality standard 30 April 2013 NICE quality standard for supporting people to live well with dementia: information for the public, accessed 6 December 2014,available at: https://www.nice.org.uk/guidance/qs30
“Policy: A Year of Care”, accessed 6 December 2014,available at: http://www.yearofcare.co.uk/policy-0
Public Enquiry Unit (2002) “Securing our Future Health: Taking a Long-Term View. Final Report” (author Derek Wanless), accessed 6 December 2014, available at: http://si.easp.es/derechosciudadania/wp-content/uploads/2009/10/4.Informe-Wanless.pdf
Royal College of General Practitioners (Clinical Innovation and Research Centre) (2011) (authors: Nigel Mathers, Sue Roberts, Isabel Hodkinson and Brian Karet) Care Planning: Improving the Lives of People with Long Term Conditions, accessed 6 December 2014, available at: http://www.impressresp.com/index.php?option=com_docman&task=doc_view&gid=75&Itemid=70
Sinclair AJ, Hillson R, Bayer AJ; National Expert Working Group. Diabetes and dementia in older people: a Best Clinical Practice Statement by a multidisciplinary National Expert Working Group. Diabet Med. 2014 Sep;31(9):1024-31. doi: 10.1111/dme.12467.
Skills for Care/Skills for Health (2007) “Common core principles to support self care: a guide to support implementation”, accessed 6 December 2014,available at: http://www.skillsforcare.org.uk/document-library/skills/self-care/commoncoreprinciples.pdf