physical and complex disabiliy

People who experience disability due to physical impairments, or have complex problems where physical and cognitive impairment occur together, represent a large proportion of any Scottish population. Because there is a very broad spectrum of conditions and problems which people can experience - potentially affecting their participation in almost every aspect of daily life - the health and social care needs which must be met by services to support them are extremely diverse.

Providing even a broad estimate of population need is difficult. Disability exists as an expression of the way in which a person's underlying impairment interacts with both the social and cultural environment around them and their own expectations or aspirations for everyday life. As a result, it is possible for two individuals, with the same medical condition that is physically impairing, to experience differing levels of disability and reduced participation. As a result defining disability is problematic.

Very often disability is defined in terms of longstanding illness. Such a definition is used in the Scottish Health Survey. Figure 1 shows the proportion of adult respondents by health board area that described themselves as having such an illness. However, this definition has the effect of capturing a very broad range of illnesses which - whilst limiting and long-term - may not be permanent or in reality severe disability.

Data collected as part of the OPCS Surveys of Disabilities in the 1980s still provide the most useful data set from which to generate indicative population estimates for physical and complex disability. This survey, which asked specifically about disabilities, not limiting illness, also used an approach to assessing physical and complex disability that focused on the limitation in function that the person described. A measure of the severity of the disability was also included. These two factors are important as they remove some of the variability that can arise from using medical conditions as a proxy for disability. They also allow a means of recognising complexity of need by using the severity level as a means of providing a proxy for complexity of disablement.

Using this data, Table 1 shows the estimated number of Lothian adults aged 16 and over who reported experiencing disability. As can be seen from this table disability generally increases with age but decreases with severity. As a consequence, the level of need for care increases with age, the relative balance from social to health care will change as the severity increases.

Estimated numbers by age for each Community Health Partnership - across all severities - are shown in Table 2. This highlights that for each locality, the population distribution will have an impact on the type and severity of need that are likely to need supporting.

A New Strategy for Physical and Complex Disability.

During the last two years in Lothian, there has been a growing resolve to create a new joint strategic statement for services to support people with physical and complex disabilities. In fact, the last such statement dates back to the creation of the first Community Care Plans in the 1980s.

Since then much has happened in how we think about and seek to support people with physical and complex disabilities. We have moved on from the notion of someone with such needs should be seen as being a passive recipient of services. Independence and supporting selfdetermination and self-managed care have become central to how organisations and services seek to meet needs.

At the same time, there have been a number of major changes in the way in which health, social and community services are configured and delivered. At the national level, these include:

All of these have been mirrored in local, strategic developments which have an impact on how services for people with physical and complex disabilities are organised and delivered.

Such fundamental changes, encompassing not only the way in which care is organised but even the very values and principles which underpin care, call for a new vision for services to guide detailed planning and service redesign. However, the recognition of the need for a new strategic statement was linked to the further recognition that, unlike other community care client groups, there was no Lothian-wide strategic planning mechanism which could be used to develop such a vision and a new strategy.

This has now been remedied and a specific Project Board for Physical and Complex Disability has been established to develop the strategy. Once the strategy is finally agreed by all possible stakeholders, the Project Board will be reconstituted as a Strategic Planning Group.

The work of the Project Board can be put most simply by identifying four key tasks that it must complete. These are:

  1. an analysis of current and future need;
  2. definition of the values and principles underpinning services;
  3. an audit of current service availability and levels of funding across the NHS, the four Lothian local authorities and our voluntary and independent sector providers; and
  4. descriptions of appropriate pathways of care that promote independence whilst ensuring people are appropriately supported.

Box 1 details some of the longer-term outcomes which the new joint strategy should include.

Establishing Managed Networks for Care

Central to the implementation of the strategy are clinical and care networks (MCNs). These provide frameworks in which multidisciplinary, multi-agency services can be developed, supported and quality assured so that care packages including self care packages - provide genuinely seamless care to meet complex care needs. Work on the development of such MCNs is underway in relation to the care of people with a range of conditions that can give rise to physical or complex disabilities.

All MCNs have requirements for specialist services to meet specific needs. However, there is also a high degree of overlap with many of the rehabilitation services, being common across condition-specific MCNs. As a result, there will be a need to ensure effective co-ordination so that these common service elements are used effectively. At the same time there will also need to be management of the interfaces between common services that are shared and specialist services. For example, there is a strong overlap with the specific approaches to the management of long-term conditions within the primary health and social care services.

In these regards developments in relation to eHealth will be essential to success (see box 2).