Coming home: complex care needs and out of area placements 2018

4 Data Collection and Analysis

4.1 Quantitative Data

4.1.1 Scope

The scope of the out-of-area data collection was that all individuals with learning disabilities who were 16 or over and who were living in placements which were not within their funding authority, were to be included in the data collection. This included individuals who were living outwith Scotland as well individuals, if they were 16 or over, who were living in residential schools.

All individuals with learning disabilities who were 16 and over, who were considered to be delayed discharge, for any reason, were to be included in the delayed discharge data collection.

Individuals with autism but without a learning disability were not included.

Data were collected in relation to the date of 31^st January 2017; that is anyone that was out-of-area or a delayed discharge on that date.

4.1.2 Data Collection Process

Each Health and Social Care Partnership (HSCP) was asked to complete an individual return. During the planning of the project, Chief Officers from each of the HSCPs were contacted by letter to inform them about the project and ask for their support in data collection. They were asked to identify a contact who would supply the requested data in their area, and all the HSCPs that replied, did this.

The data came from people in a range of different roles, depending on the HSCP. On the whole these appeared to be professionals working within adult learning disability services, but for a few HSCPs, the data were supplied by someone working more specifically in a data-related role.

4.1.3 Data Collection Tool

Respondents were asked to complete an Excel spreadsheet for every individual; there was one sheet for out-of-area individuals which contained 29 questions, and one sheet for delayed discharge individuals, with 27 questions. Questions were mainly answered by selecting one option from a dropdown list, for example to choose in which HSCP a person was placed if out-of-area. Where more than one answer was required, for example to list different types of challenging behaviour, a list of options and codes were given in the guidance, and these could be added as free text. All questions were to be answered individually for each person.

The data collection tool and guidance was consulted on with stakeholders from both health and social work backgrounds in order to test its fitness for purpose. Feedback was taken into account and relevant changes and additions were made. One of these was the need to make the tool as user friendly as possible; therefore the dropdown format with a range of pre-selected options was used. Advice from stakeholders was given as to the likely options to be required for different questions.

The data returned contained no identifying information for data protection issues.

4.1.4 Issues with Data Collection

There were a number of issues with accessing the data. Data were due to be returned by 31^st March 2017. However, data were still being sent in 6 months later, and this may have impacted the accuracy of some returns.

Also, as would be expected with a data collection of this size from so many different sources, some inaccuracies and anomalies were found at a later date. In terms of the information received, it may be more helpful to regard this as indicating themes or trends in relation to the issues, rather than precise numbers.

One HSCP did not participate in the data collection process, and therefore all overall figures nationally have to be regarded with this exception; this is particularly significant since this is a large authority, whose data would have changed the reported numbers substantially.

If an individual was placed in a hospital outwith the funding authority, then they were recorded as out-of-area and included in the out-of-area returns. It was acknowledged that individuals could be both out-of-area and delayed discharge, and therefore there was the possibility of double reporting. In order to ensure that that this had not taken place, for any individual recorded as out-of-area and placed in hospital, data from that HSCP in relation to the delayed discharge return were cross referenced to ensure that the same person had not been entered twice. Using data such as age, gender and diagnosis, it was possible to confirm that this had not happened.

4.1.5 Data Protection

In order to adhere to data protection guidelines and to ensure that no individuals could be identified, no numbers less than five are reported in the out-of-area data and no numbers less than 10 in the delayed discharge data.

4.2 Data Analysis

4.2.1 Approach to Analysis

Out-of-area and delayed discharge data are analysed separately, as there were a range of different questions and issues for each group; however there are many issues in common, so in terms of identifying themes and key issues, they are regarded as a combined group.

Most data are presented as percentages as this is more useful for comparison; however, on occasion, actual numbers are used and this is specified where it is the case. Percentages are rounded up to the next whole number.

4.2.2 Out-of-Area Analysis

It is acknowledged that some people may be living out-of-area and that this may be appropriate for them, for example it is based on a positive choice, rather than a lack of local services; or they are only just out-of-area, and may actually be nearer their family or local community where they are living; or they have been living there so long that there is no connection with their funding authority.

Respondents were therefore asked to specify the reasons for someone being out-of-area and chose from a list including:

• based on their choice or their family's choice
• lack of capacity in local services
• lack of local specialist services
• to prevent hospital admission

Where anything other than 'their choice or their family's choice' was selected, then this was judged to be a significant factor in identifying that these individuals may be part of a more significant subgroup, who were 'inappropriately' out-of-area.

A follow-up filter was then applied to establish if HSCPs felt that repatriation was required for this group. No reason was required for the decision as to whether repatriation was required or not; this was regarded as a judgement for the funding HSCP, based on their knowledge of the individual, their current placement and progress there, and the wishes of them and/or their family. Where HSCPs did indicate that repatriation was required, then the group who met both these criteria became specified as inappropriately out-of-area, and they are therefore regarded as the group who are 'priority to return'. They are the focus of attention for the main analysis in this report.

This was felt to be a reasonable way of identifying the group for whom it is most pressing that services are developed and that action is taken; that is, those who are out-of-area not through choice, and for whom the HSCP has identified an imperative to return. They are referred to in this report as the 'priority to return' (PTR) group.

4.2.3 Specific Groups for Additional Analysis

There were two additional subgroups which merited specific consideration for separate group analysis: these are the subgroup who are autistic in addition to having a learning disability, and the out-of-Scotland group. Analysis for each these groups is therefore presented in addition to the main analysis of the priority to return group.

4.3 Qualitative Data

4.3.1 Individual Case Studies

A range of individuals' cases were considered as case study examples of either good practice or to highlight the issues which challenge the sector. Some of these were supplied by HSCPs, some came directly from discussions with family carers.

4.3.2 Meetings with Health & Social Care Partnerships

A number of meetings took place with representatives from different HSCPs across Scotland. Some of these meetings were in groups, for example the Social Work Scotland Learning Disability subgroup; others were done on a health board basis; most were individually with the HSCP. The aim of the meeting was to garner the views of HSCPs in relation to the issues of supporting people with learning disabilities and complex needs; discussions ranged over topics such as housing, social care providers, costs and financial challenges, and the best models of care for the future.

4.3.3 Meetings with Social Care Providers

In addition, a variety of meetings were held with social care providers to discuss their experiences of supporting people with complex needs and their views on what is helpful in ensuring successful services. Providers were encouraged to discuss examples of services which had broken down, as well as services where they were providing successful support. Both third sector voluntary and private providers were involved.

4.4 Positive Behavioural Support Project

4.4.1 Overview of Positive Behavioural Support

Positive Behavioural Support (PBS) is an ethical, evidence-based and proactive approach to supporting people with learning disabilities, particularly those with complex support needs. It focuses on improving the person's quality of life and reducing challenging behaviour. It is accepted internationally as best practice and it is well-established as an effective framework for supporting people with learning disabilities and challenging behaviour.

It has been defined and refined in a number of studies over the past 25 years (Gore et al, 2013), and there is now a range of evidence demonstrating that PBS is an effective approach to reducing challenging behaviour and improving quality of life for individuals with learning disabilities (Goh & Bambara, 2012; La Vigna & Willis, 2012). It is also linked with reduced use of restraint (Singh et al, 2016); is effective in addressing severe challenging behaviour (McClean & Grey, 2012); can be implemented in family settings (Durand et al, 2013); and can be implemented via a staff training approach (MacDonald & McGill, 2013).

PBS is a person-centred framework for multi-component intervention; it is not a single intervention. All interventions are based on an understanding of the person's behaviour and what communicative function their behaviour serves for them. It may therefore recommend changes to the environment or the person's support in order to better meet their needs. It pays attention to a person's health and well-being, to their day-to-day activities, to how they are supported, where they live and how their carers interact with, and support them.

4.4.2 Rationale for the Positive Behavioural Support Project

The key aim of PBS is to support those with additional needs to have the same life opportunities as everyone else, and it focuses on what services and carers need to do in order to meet people's needs. It has become more widely used in learning disability services and is recommended by a range of good practice guidelines (ACEVO, 2015; DOH, 2014), particularly following the Winterbourne View scandal and the development of the Transforming Care agenda in England (NHS England, 2014). It is a key factor in successful support for services for people with complex and challenging needs, and it was therefore judged that part of this project should focus specifically on scoping PBS within Scotland.

Research evidence tells us that following the process of implementing PBS, the workforce would be expected to be more skilled (Wardale et al, 2014), knowledgeable (Lowe et al, 2007), and confident in working with people with behaviours that challenge (Davies et al, 2015), and would have a better understanding of the reasons for challenging behaviour occurring (Rose et al, 2014). PBS implementation would also result in the use of practice leadership, providing better support, guidance and feedback for staff, thus changing how well supported staff feel, decreasing stress, and improving morale.

PBS also has a role in providing less restrictive alternatives to physical restraint and psychotropic medication, and it is likely to be an important element in developing effective community-based support to individuals currently living in hospitals.

4.4.3 Survey of Use of Positive Behavioural Support

A survey was undertaken within health and social care services to find out about the use of PBS. The survey was sent out to approximately 30 care providers and support organisations in Scotland, and was also sent to all 31 HSCPs across Scotland.

Questions asked were around training (who delivers training in your organisation; what level of training is delivered; where did these trainers receive their training); around practice (how is implementation of PBS supported; what supervision, support and mentoring is provided; is there a PBS policy in place); and around outcomes (how is the implementation of PBS evaluated).

In addition to the survey, a review of literature took place in relation to both research and good practice guidance in PBS, and additional information was gained by meeting with PBS training provider agencies, and in liaising with PBS professionals and academics throughout the UK.