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CHAPTER ONE INTRODUCTION
Background
1.1 Delivering for Health (2005: Section 2.2) outlined the need to develop a more systematic approach to managing the health-care needs of all those with long-term health conditions. This involves:
- matching more effectively the patient's need for care with the right level of response
- managing someone's care needs as a whole when they have more than one condition
- using information systems to deliver joined-up care
- using the skills of the whole clinical team more effectively
- developing systematic contact and support for patient self care and their carers
- reducing emergency hospitalisation
- ensuring a consistent approach and a spread of best practice across Scotland 2.
1.2 One of the important initial stages is to provide detailed knowledge of the characteristics, circumstances and needs of those with long-term conditions to underpin successful service change. This research was commissioned to supply that detailed knowledge.
Aims and objectives
1.3 The main purpose of this research was to produce a detailed profile of the demographic, lifestyle and social characteristics of adults in Scotland with long term health conditions, by analysing data from the Scottish Household Surveys 1999-2006 and from the most recent Scottish Health Survey in 2003.
The detailed objectives of the research were to:
- Explore the relationships between housing, transport, social justice / exclusion, lifestyle and health and identify the key predictors of disability / ill health
- Explore urban / rural variations
- Examine the characteristics of people with particular types of long term health condition
- Explore the support that unpaid carers provide to people with long term health conditions
- Identify groups of people with long term conditions who are particularly in need of support
- Identify and explore trends over time (in relation to the Scottish Household Survey)
1.4 The purpose of the report is to help inform the development of national health-care policy to tailor health services to the needs of people with long term illness or disability.
1.5 The focus was on adults (i.e. those aged 16 and over) who were living in private households. Thus, any adults in residential care, e.g. care homes or hospitals, were not considered. The effect of this on estimates of prevalence of long-term conditions among adults in Scotland is considered in the conclusions.
The surveys
1.5 The Scottish Household Survey ( SHS) is a major survey of the people of Scotland. It was first conducted in 1999, on behalf of the Scottish Executive (now the Scottish Government), and has been conducted on a continual basis since. The survey is based on interviews carried out in approximately 3,900 households each quarter, and provides information on the composition, characteristics and behaviour of Scottish households, both nationally and at local authority level.
1.6 The specific aims of the survey are to:
- provide household and individual information not currently available in Scotland, particularly to support the work of the Scottish Executive Development Department's Communities, Transport and Local Government areas and the work of the Scottish Parliament;
- permit disaggregation of such information both geographically and in terms of population sub-groups (such as families with children or the elderly);
- allow the relationships between social variables within households to be examined. This will support cross-departmental and inter-departmental policies such as those on social justice and welfare-to-work;
- allow early detection of national trends;
- allow detailed follow-up surveys of sub-samples from the main survey sample, if required 3.
1.7 The survey is based on a sample of households in Scotland. The highest income householder, or their partner/spouse, is interviewed face-to-face about themselves and other members of the household. The following topics are covered: household composition, accommodation details, driving and transport, employment, health and disability, financial circumstances (including household finances, savings and mortgage and rent costs). In addition, a randomly selected adult member of the same household aged 16 or over (who may, by chance, be the same person) is interviewed on a range of topics (accommodation, neighbourhoods and community safety, education and training, travel and transport, volunteering, health and disability, employment, income). The results from the survey are therefore representative of both Scottish households and adult individuals.
1.8 The main findings from the survey are reported in the SHS Annual Reports and other Scottish Government publications. More information on the SHS, and outputs from the SHS are available online from the Scottish Household Survey website ( www.scotland.gov.uk/shs). Complete and simplified datasets are available to the general public from the UK Data Archive.
1.9 The Scottish Health Survey ( SHeS) is a large-scale household survey of the health, health-related behaviours and use of health services of people across Scotland. The aims of the survey are as follows:
- to estimate the prevalence of particular health conditions in Scotland;
- to estimate the prevalence of certain risk factors associated with these health conditions and to document the pattern of related health behaviours;
- to look at differences between regions and between subgroups of the population in the extent of their having these particular health conditions or risk factors, and to make comparisons with other national statistics for Scotland and England;
- to monitor trends in the population's health over time;
- to make a major contribution to monitoring progress towards health targets.
1.10 The survey is based on a sample of households in Scotland where all adults and up to 2 children were eligible to take part in the survey. The interviews are carried out in two stages. A personal interview which covers self assessed health and disability, health service use, cardiovascular and respiratory disease, smoking, drinking, common mental health problems, eating patterns and physical activity, as well as collecting information on a range of indicators of socio-economic position. This is then followed by a nurse visit. The nurse asks some further questions, for example on use of prescribed medicines, takes a series of anthropometric and biomedical measurements, including blood pressure, waist and hip circumference and lung function and collects blood and saliva samples 4.
1.11 The most recent survey (2003) consisted of interviews with 8,148 adults and 3,324 children. Of these, 5,444 adults and 2,224 children agreed to a nurse visit. 5
1.12 To date, the survey has run on three occasions, in 1995, 1998 and in 2003. A comprehensive review of the survey was carried out in 2005/2006. One of the main recommendations of the review was that the survey should become continuous. The next survey is currently planned to run from 2008-11 in stages, and will have Scotland level results available on an annual basis.
Definitions
1.13 The term 'long-term conditions' has been defined and used in various ways.
In their project brief to Managing People With Long Term Conditions (2005), Audit Scotland state:
"Long term conditions are those that cannot at present be cured but
can be treated and controlled over a long period of time by medication and other therapies. Examples include chronic obstructive pulmonary disorder ( COPD), epilepsy, asthma and diabetes mellitus."
They then add in a footnote:
Long term conditions are also known as chronic diseases.
1.14 This report used long-term conditions as an all-embracing term, to include long-term illnesses, long-term health problems and disabilities.
Questions and terminology used in the surveys
1.15 In the Scottish Household Survey ( SHS) the same question is asked of head of household and of the random adult:
Do you have any long-standing illness, health problem or disability that limits your daily activities or the kind of work that you can do?
By disability as opposed to ill-health, I mean a physical or mental impairment, which has a substantial and long-term adverse affect on your ability to carry out normal day-to-day activities.
The respondent has to choose one of the following answer categories 6:
- Yes, disability
- Yes, illness or health problem
- Yes, both disability and illness or health problem
- No, neither
Previous analysis drawing upon SHS data 7 has summarised the categories to:
- Disability, with or without illness
- Illness or health problem only
- Neither
They can also be summarised to:
- Disability, and/or Illness or health problem
- Neither
1.16 In the Scottish Health Survey ( SHeS) 2003 the following question was asked:
Do you have any long-standing illness, disability or infirmity? By long-standing I mean anything that has troubled you over a period of time, or that is likely to affect you over a period of time?
To which the answer could be either 'yes' or 'no'.
For those who answer 'yes', there was a subsequent question:
Does this illness or disability limit your activities in any way?
Again, the answer could be 'yes' or 'no'.
This leads to a three-fold classification:
- Limiting long-standing illness/disability/infirmity
- Non-limiting long-standing illness/disability/infirmity
- No long-standing illness/disability/infirmity
Implication for the current report
1.17 The implications of the different questions and terminology are that the analysis drawing upon SHS data has been able to examine differences in profile between those with a disability and those with a long-term illness, but that it was not possible to make a similar distinction with the SHeS analysis. Here the distinction has been between those with limiting long-standing conditions 8 and those with non-limiting long-standing conditions.
1.18 Comparisons between the two surveys were made by comparing those with a long-term illness, health problem or disability ( SHS) to those with a limiting long-standing condition ( SHeS). Each of these categories denotes long-term health conditions which limit activities.
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