The methodology we propose are incorporated into the six elements below:
Undertaking LeDeR reviews in accordance with LeDeR methodology, and locally agreed review process including initial reviews and multi-agency reviews
We will ensure that all reviewers have undertaken LeDeR reviewer e-learning training on top of extensive clinical experience and training in working with people with learning disabilities
All reviews will be undertaken using the secure web-based LeDeR review system, with all review documents completed online and any additional case notes and supporting paperwork stored within the LeDeR review system.
Maintain communication with the Local Area Contact and the LeDeR programme team as appropriate during the course of a review to update on the progress and highlight any problems.
Bi-weekly progress reports will be provided together with any ad hoc reports where required. These will be shared with the Senior Responsible Officers and Local Area Contacts.
Write an accurate and concise report of the review
The most authoritative benchmarking information in the UK is that provided by the Annual Report of the Learning Disabilities Mortality Review Programme the last being December 2018 (University of Bristol, 2018). It will be possible to benchmark data against this on the following topics:
- Number of Deaths notified to the LeDeR Programme
- Those Notifying Deaths
- Demographic characteristics and information about the deaths of people with learning disabilities
- Marital Status
- Severity of Learning Disability
- Living alone or away from home
- Place of deaths
- Age of deaths
- Cause of deaths
- Deaths potentially amenable to good quality care
- Aspects of care or service provision considered to have demonstrated the provision of excellent care
- Aspects of care or service provision that may have affected the person
A qualitative analysis can be undertaken to identify any common themes, trends and contributory factors and any patterns in the findings and recommendations in the reviews. Once themes have been identified, the team will use the second stage of the ‘grounded theory’ model to assess if there is any relationship or causal connection between the themes identified and the ‘predictability or preventability’ of the deaths, as concluded by the review authors. It is anticipated that generic themes will include:
- quality and documentation of risk assessment and management;
- communications policy & practice;
- training and supervision;
- organisational learning;
- quality assurance;
- how well they are supporting families, as part of care & treatment
A number of common themes have been identified in previous reviews and studies. However, for the purpose of this project, the team will adopt a ‘thematic analysis’ approach, comparable to the first stage of grounded theory. (These are both well established methods of analysing text). A primary focus of this method is to draw out the themes from the text, without preconceived ideas. Given the team’s experience, the objective will be to minimise the impact of prior knowledge and to rely on themes emerging from the reviews. Once identified, the themes will, as far as possible, be grouped according to the following types of contributory factors, taken from the Patient Safety literature:
- patient factors;
- task and technology factors;
- individual (staff) factors;
- team factors;
- work environment factors;
- organisational and management factors;
- institutional context factors.
In particular, in order to identify potential indicators, the team will be looking for organisational issues such as service change, staffing or workforce issues, resource issues or service gaps – where services with their Commissioners can proactively mitigate risks associated with the indicators. The factor types listed above will also be utilised in this analysis.
we offer the option of a clinical summit once the initial analysis of the reviews has been completed. Members of the local clinical team will be ‘second’ readers of the reports for analysis purposes but we felt it useful that all of the team have access to and ability to comment on all of the material. The summit will commence with a presentation of learning from the analysis and then the local clinical team will be encouraged to interrogate the information further to ensure that all learning is identified and any commentary is reliable and valid. The summit will be attended by the whole team and will provide an opportunity for discourse between each of the participants and to balance all of the views emerging. The service and carer user element will be an important focus of this day.
The project team envisage a number of challenges:
- The time that needs to be invested in admin is likely to be considerable. This would include contacting the right people in services, accessing records, both electronic and paper documents and reports, arranging to meet individuals, booking rooms and so on
- The time required to gather all the information relating to each review and that it may very well not be stored on one site, readily available, or easy to access
- Gaining information from a number of organisations (Primary Care; Acute NHS Trust’s; Learning Disability NHS Trust’s; Social Services; Voluntary and non-statutory organisations).
- That there may be some information that is unobtainable for various reasons
- Establishing a key link person for each review within the host agency
- As the LeDeR process is a non-commissioned activity some organisations may not prioritise the reviews
- The proposals take the time elements into consideration when carrying out the reviews
- Information that is unobtainable or barriers to accessing the necessary information will form part of the final report and recommendations
- Carrying out the reviews will require buy-in at a senior level; building productive and trusting relationships with those senior management is essential
- Support will be provided to the organisations to embed the LeDeR process into existing systems of work so that they continue to be completed after the project has ended