An exploration and evaluation of mechanisms to aid recognition of acute deterioration in people with learning disabilities: "What do I need to know?"

Greaves, Jane, Steven, Alison, Alderson, Julie and Grabrovaz, Meaghan (2021) An exploration and evaluation of mechanisms to aid recognition of acute deterioration in people with learning disabilities: "What do I need to know?". Project Report. Northumbria University, Newcastle upon Tyne.

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Abstract

Executive summaryBackgroundMany people require help with everyday life and the management of their healthcare. One such group is people with learning disabilities. They may be cared for in their own homes, in care‐homes or nursing homes. They are not ill, though they often have chronic health problems, but are as susceptible to acute conditions, such as Covid-19 and sepsis, as the rest of the population. It is known that persons with Learning Disability have worse outcomes from acute illness than average. This was highlighted recently by their worse outcomes from Covid-19 infection than other population groups. Most adults, when they develop an acute illness can make clear that they are feeling unwell and are able to communicate their symptoms. They can trigger the healthcare system to provide the support, investigation, and treatment appropriate to their condition. Children, elderly people with cognitive decline, and people with learning disabilities are less able to do this. When they become ill, they are more dependent upon those around them recognising that there is a problem, and this can often be difficult as their behavioural and emotional responses are sometimes understandable only to those who are familiar with their ‘usual’.In acute care settings Early Warning Scores (EWS) are used to identify the signs of deterioration. These use a score derived from the usual monitoring information that is recorded routinely. Recently EWS has been introduced in community settings where people do not normally have their vital signs monitored. Some EWS require monitoring of the patients’ vital signs (Pulse, Blood Pressure, Oxygen Saturation, Respiratory Rate and Conscious Level) whereas others depend on small changes in behaviour and do not require the use of any equipment. Study aims and designAim: 1. To investigate and evaluate the current use, the potential for future use and the impact of routine use of Early Warning Systems to identify acute deterioration in people with a learning disability. Design: A qualitative approach to explore and evidence the lived experiences and knowledge of paid and unpaid carers with respect to the following topics:• Their ability to recognise the early signs of illness and deterioration in the condition of adults with a learning disability • Their experiences of escalating their concerns to get timely help and treatment• Their thoughts and opinions about the usefulness of such tools and education2. To review the variety of EWS being used outside of acute care in England.3. To identify the range of soft signs recognised by the participating carers.The SampleDuring the development stage of the project, we were also asked to evaluate an NHS England project to teach the use of Restore2 Mini to carers for people with learning difficulties. This review became the source of the sample of carers interviewed for the overall study. This decision was partly a response to the difficulties presented by the onset of the pandemic that complicated the use of a general sample of carers. Thirty-three participants were recruited from the training sessions: 10 family carers (unpaid); 10 paid staff members working for care provider organisations (paid carers); 4 Shared Lives carers (paid carers). Nine participants were recruited from super-trainer sessions. Semi-structured interviews with the carers were transcribed and analysed for significant themes.ResultsThe carers’ concerns• Health professionals do not value the knowledge and skills the carers possess in their role and disregard their contributions. Carers report that this sometimes results in unnecessary clinical complications.• Carers themselves accept that they do not have the necessary technical language for communicating with health professionals.• Primary and secondary care ‘gatekeepers’ often lack the knowledge to recognise the urgency of an issue raised by carers. This can lead to delay in securing appropriate treatment.• Some patients do not have their learning disability registered with their GP. This complicates issues of access and entitlement to services.• Carers lack confidence in their capacity to undertake clinical tasks – such as making vital signs observations.Training for Restore2Mini• Those carers who had attended training sessions in the use of Restore2 Mini liked the format of the training and found the content useful.• Carers who attended training for Restore2 Mini were subsequently more confident in making assessments• Carers endorsed the Restore2 Mini as providing them with appropriate language to describe acute illness.• Carers endorsed the use of an early warning score that included vital signs, where it provided baseline values that were useful in the interpretation of subsequent episodes of deterioration.• Carers believe that without Learning Disability awareness training for acute sector medical professionals the potential benefits of Restore2 Mini will not be realised.• Carers believe that if those managerial and administrative staff who control access to primary and secondary care gatekeepers do not have training in the use and language of Restore2 Mini its potential benefits will not be realised.Scoping review of tools in use in EnglandA wide range of EWS tools were identified. Carers favour those that do not require the use of equipment for measuring the individual’s vital signs. The reasons for this were that the high rate of staff turnover and the heterogenicity of background of carers makes the more complex training for making physiological measurements difficult, that many people with learning disabilities find procedures such as blood pressure measurement frightening, and that the use of soft signs indicators endorses and augments the carers intuitive evaluation of their clients.Soft signsSoft signs are changes from an individual’s usual behaviour that indicate that an individual may be becoming unwell. This study identified a wide range of types of soft signs that those caring for people with a learning disability have encountered. Soft signs are highly variable and, in the case of those with learning difficulty, sometimes unusual; thus, it can take time and personal knowledge of the individual for carers to become experienced in their recognition.

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