Vulnerable Groups

Measurement strategies and methods are particularly challenging for vulnerable populations because:

• numbers of subgroup members in any single data set may be too small for

significant differences to be detected,

• identifying the groups through existing data systems may be difficult,

• qualitative information may be lacking about quality problems these groups face

140

Effective health care provision is dependent on good communication between all stakeholders and leads to an inclusive and dignified experience. Many people with intellectual disabilities will have significant communication needs and it is essential that clinicians adapt their service delivery to accommodate this. This includes implementing larger organisational changes, such as providing a range of accessible information, to preparing appropriately for one-on-one interactions (RCN, 2013a). Some positive and not so positive experiences of people with intellectual disability relating to medication use are illustrated in Box 2.12 below. [QI 2]

Experiences of People with Intellectual Disabilities of the Medication Use Process

Positive Experiences Areas for Improvement in Relation to Dignity • My nurse gave me a leaflet about

the medication.

• The leaflet was easy to read. It

used words that I knew.

• It also had pictures that helped. • We read through it together and

she answered my questions.

• I told the doctor that I would take

the medication.

• I was at the doctors and he started

to write a prescription.

• He hadn’t told me what the

prescription was for.

• He didn’t ask if I wanted the

tablets.

Box 2.12 Experiences of People with Intellectual Disabilities of the Medication Use Process

Paton and colleagues audited prescribing practice for antipyschotics against

recognised standards (Paton et al., 2011) using data collected from the clinical records of individuals with intellectual disability who were under the care of mental health services in the UK and prescribed an antipsychotic drug. The study sample comprised two thousand three hundred and nineteen patients from thirty-nine clinical services. The three standards used in the study were:

• The indication for treatment with antipsychotic medication should be

documented in the clinical records,

• The continuing need for antipsychotic medication should be reviewed at least

141

• Side effects of antipsychotic medication should be reviewed at least once a

year and this review should include assessment for the presence of extra- pyramidal side effects (EPS), and screening for the four aspects of the metabolic syndrome: blood pressure, obesity, glycaemic control and plasma lipid profile.

In the discussion of their results the authors state that ‘with respect to efficacy, the effects of treatment were closely and actively monitored’. They noted also that

‘side effects had been reviewed over the previous year in 7 out of every 10 patients, in 6 out of every 10 patients there was no documented evidence that EPS had been assessed’.

With regard to metabolic side effects they found that

‘blood pressure had not been measured in 6 out of 10 individuals, and for 4 out of every 10 there was no evidence that they had been weighed, or that blood glucose or lipids had been checked’.

The data collected during the Paton study did not suggest that patients with more severe intellectual disability were more likely to be targeted for side effect review and this is a cause for concern. [QI 7, QI 15, QI 16]

2.5.12.1 Quality Indicators NHS

In the report High Quality Care for All, Lord Darzi set out commitments for making

quality the organising principle of the NHS (Darzi, 2008). His vision is that all NHS staff will measure what they do as a basis for improving quality. Quality Indicators primarily intended for use by staff to inform quality improvement activities, supported by

appropriate statistical techniques to analyse and interpret the data, have been

identified by the Information Centre for Health and Social Care and the Department of Health (HSCIC, 2009) in England. The list is evolving and has one indicator that relates specifically to intellectual disability (learning disabilities), seen in Box 2.13 and some others that would also apply to this population group are available in Box 2.14.

142

NHS Quality Indicator Relating to Effectiveness of Care for Those with Intellectual Disability

Quality Outcomes Framework (QOF)* Learning Disabilities

‘The practice can produce a register of patients with learning disabilities’.

The rationale for this indicator is ‘The idea of a learning disability register for adults in primary care has been widely recommended by professionals and charities alike’

(Mencap, 2004).

*The QOF rewards general practices for how well they care for patients.

Box 2.13 NHS Quality Indicator Relating to Effectiveness of Care for Those with Intellectual Disability

Examples of NHS Quality Indicators that Appear Relevant to Population with Intellectual Disabilities and Behaviour Disorders

• The percentage of patients diagnosed with dementia whose care has been

reviewed in the previous 15 months [QOF Dementia].

• The percentage of patients on lithium therapy with a record of lithium levels in

the therapeutic range within the previous 6 months [QOF Mental Health].

• The percentage of patients on the register who have a comprehensive care

plan documented in the records agreed between individuals, their family and/or carers as appropriate [QOF Mental Health].

• The percentage of patients age 18 and over on drug treatment for epilepsy who

have a record of seizure frequency in the previous 15 months. [QOF Epilepsy].

Box 2.14 Examples of NHS Quality Indicators that Appear Relevant to the Population with Intellectual Disabilities and Behaviour Disorders

143