Vulnerabilities of people with learning disabilities continue to compromise their safety in NHS hospitals

Background

A number of reports in recent years have highlighted concerns about the treatment of patients with learning disabilities in NHS hospitals, highlighting poor communication, incorrect assumptions about quality of life and poor understanding by healthcare professionals putting people at continued risk of poor care – and even death.

In 2008, the publication of the Michael report, an independent inquiry into access to health care for people with learning disabilities saw a number of key recommendations relating to the need for all NHS hospitals to better identify people with learning disabilities and to track their care through the system, ensuring that reasonable adjustments were made.

In addition, the report made recommendations relating ensuring the views of people with learning disabilities were included in planning and development and that the there was involvement of family and other carers as partners in the provision of treatment and care.

The authors of this study took these recommendations as a starting point and set out to look at which factors might affect the implementation of such strategies in six NHS acute hospitals in England. They wanted to look at which systems and processes might help or hinder the implementation of such strategies in order to identify and share good practice and recommend changes to poor practice.

Methods

What the researchers did was to work with six NHS hospitals in the south of England over a 21 month period using a mixed-method approach.

The research was designed three stages

Stage one involved gathering information from each of the six sites about policies, structures and systems that were in place

Stage two lasted for twelve months and was the stage in which the researchers looked in detail at the effectiveness of any implemented measures. During this stage they:

carried out a questionnaire survey with 990 clinical staff
carried out semi-structured interviews with 68 hospital staff (managers, nurses, health-care assistants and physicians)
interviewed 33 adults with learning disabilities
carried out a questionnaire survey with 88 carers of people with learning disabilities who had been patients during a 12-month period – 37 of this group took part in semi-structured face-to-face or telephone interviews
carried out participant observation of 8 in-patients during the 12-month period.
carried out interviews with the patient, hospital staff and a carer
collected data on numbers of patients with learning disabilities within the 12-month period
monitored incident reports involving patients with learning disabilities within the 12-month period

Stage three was where the researchers looked at whether the findings from their study could be generalised to other vulnerable patient groups, which they did through holding expert panel discussions at four of the sites

Results

What they found were a number of examples of good practice. There was a willingness to improve care for patients with learning disabilities but the overall impression was that good practice was patchy across the six sites. .

In terms of concerns about safety, they found delays and omissions of care, (e.g. unmet nutrition needs) and delays and omissions of medical treatment (e.g. treatment not given because of perceptions relating to inability to cope with/consent to treatment or assumptions about quality of life).

There were a number of strategies identified including, the use of learning disability liaison nurse role, carer policies, patient-held health records staff training inclusion of people with learning disabilities and carers on advisory bodies (positive effects of these approaches were not found across all wards/areas in each hospital)

GPs do not routinely pass on information to hospitals about learning disability

They identified a number of barriers:

lack of effective systems for communicating information about known learning disability between primary and secondary health-care services. (General Practitioners did not routinely pass on information about learning disability, so hospitals had to identify this at the point of referral)
no effective system and poor staff expertise in flagging learning disability -many staff reported a reluctance to ‘label’ people.
lack of understanding for the need to make reasonable adjustments and a lack of understanding and confidence in using the Mental Capacity Act
carer involvement was inconsistent – crucial knowledge of the person that carers had was often disregarded.
assumptions were made about the level of care that would be provided by carers whilst the person was in hospital, leading to staff failing to provide basic care
no consistent lines of responsibility and accountability across sites, with no clear allocation of responsibility and accountability at ward or clinic level – good practice was often dependent on individual staff members’ attitudes and understanding.

learning disability liaison nurses helped put policy into practice at the point of patient contact

As well as barriers, there were a number of enablers identified, including;

learning disability liaison nurses and ward managers as agents for the translation of policies into practice at the point of patient contact
where sites had a liaison nurse they were much more likely to be able to identify patients with learning disabilities and to respond to individual needs with reasonable adjustments.

The researchers also found on-site liaison nurses were better than community-based ones at raising staff awareness, gaining staff trust and increasing the numbers of patients with learning disabilities identified within the hospital. Not surprisingly, where there was support from senior management for the role and post-holders had seniority and authority to change patient care pathways, the role was most effective.

Conclusion

The authors conclude that their findings provide further evidence that the vulnerabilities of people with learning disabilities is leading to compromised patient safety in NHS hospitals.

Key conclusions are:

the lack of effective systems for sharing information across NHS services, means that many patients with learning disabilities will remain unidentified within NHS hospitals
accountability and responsibility for co-ordination of support to patients with learning disabilities could reduce patient safety risks and the authors suggest that day-to-day accountability should be allocated to ward/clinic managers
establishing Learning Disability Liaison Nurse roles based in hospitals with sufficient support and seniority may be effective in addressing compromised safety issues for patients with learning disabilities.
the development of shared care could improve the involvement of carers, enabling their knowledge to be used in support and to clarify the extent of carer involvement for individual patients.
staff training (involving people with learning disabilities and carers) is needed to raise understanding and awareness and to help improve the operation of the Mental Capacity Act

Recommendations for further research

The authors also make a number of recommendations for further research:

identify the most frequently needed reasonable adjustments within hospital care pathways and their cost implications
identify the most effective structures for ensuring clear lines of responsibility and accountability
look at practical and effective ways of flagging patients with learning disabilities across NHS services and hospitals
develop, implement and evaluate protocols for shared care; Evaluation of the effectiveness of liaison nurse posts