The Health Equalities Framework (HEF): Prioritising clinical decisions and supporting the measurement of outcomes for people who have intellectual disabilities

There is increasing evidence that use of the Health Equalities Framework (HEF/HEF+) can positively influence timely and prioritised approaches that improve health and social outcomes for people who have intellectual disabilities.

Gwen Moulster, Dave Atkinson, Crispin Hebron and Phil Boulter

Abstract

There is increasing evidence that use of the Health Equalities Framework (HEF HEF+) can positively influence timely and prioritised approaches that improve health and social outcomes for people who have intellectual disabilities.

Using the HEF /HEF+ changes the way people view the urgency for intervention and often drives the type and format of intervention. It helps focus care around a person-centred approach that is meaningful to the individual and the people that care about them.

This article provides examples from practice and describes how the HEF/HEF+ works.

Key words

Health inequalities, Person-centred, Prioritisation, Decision-making, Interventions, Outcomes, Case studies

Introduction

The Health Equalities Framework (HEF) (2013) and (HEF+) (2016) was developed by four consultant learning disability nurses, Dave Atkinson, Phil Boulter, Crispin Hebron and Gwen Moulster as a practice-focused tool in response to concerns raised by the Winterbourne View investigation (DH 2012a, b) that health care practitioners working with people who have intellectual disabilities did not appear to be accountable for any defined or measurable outcomes.

There was some urgency to create something that could be used in practice in response to the Government drive for ensuring the delivery of safe and effective outcome-focused care. The tool is based on the established evidence base of the known determinants of health inequality experienced by people who have learning disabilities (Emerson & Baines 2010, Emerson et al 2011).

Wide consultation and engagement was undertaken across organisations including the Learning Disabilities Professional Senate, professional bodies, people with learning disabilities, families, carers, advocates and health and social care professionals

As a practice decision-making tool there is increasing evidence from the pilots and feedback received, that use of the HEF can positively influence the priority for intervention and enable timely approaches that improve health and social outcomes for people who have intellectual disabilities.

Using the HEF changes the way people view the urgency for intervention and often drives the type and format of intervention. It helps focus care around a person-centred approach that is meaningful to the individual and the people that care about them.

About the HEF

The HEF is based on the evidence provided by the IHaL reviews of health inequalities (Emerson & Baines 2010, Emerson et al 2011). There are five key domains of health inequalities for people with intellectual disabilities. Emerson and Baines (2010) describe these as:

* Social

* Genetic, biological and environmental

* Communication and health literacy

* Personal health risks and behaviours

* Access to quality services

The HEF measures the impact of exposure to these domains, by concentrating on the determinants of health inequalities and focuses on prevention and reduction, rather than just reacting to symptoms.

Completion of the HEF produces a HEF profile that gives a unique personalised picture that supports decision-making around the priority areas for intervention.

The framework is appropriate for all people with intellectual disabilities whether young or older, profoundly disabled, physically or mentally unwell, in hospital or living in the community. It can be utilised in any setting and as a tool to enhance and demonstrate the benefit of any type of clinical or social intervention. It is not intended to replace existing outcome tools that are used in specific settings or for specific interventions; its purpose is to provide an overarching framework through which current evidence and approaches can be collated and their overall impact systematically evidenced.

The eHEF

The HEF includes an electronic tool - the eHEF, this enables easy completion and produces helpful profiles, so priorities and progress can be easily seen. It also permits data aggregation - allowing outcomes to be evaluated for individuals and across teams, services, localities, regions etc.

The eHEF can be downloaded from http://www.debramooreassociates.com/index.php?option=com_content&view=article&id=402:the-health-equalities-framework-hef&catid=23:national-news&Itemid=39

or NDTi http://www.ndti.org.uk/publications/other-publications/the-health-equality-framework-and-commissioning-guide1/ with all other related documents, tools and guidance.

Using the eHEF

The Health Inequality Domain Indicators are shown against each of the five determinants below:

Health Inequality Indicators

Social

Social Accommodation
Employment & meaningful activities
Financial support
Social contact
Additional marginalising factors (such as ethnicity)
Safeguarding issues

Genetic and Biological

Assessment of physical & mental health needs and health checks
Long Term Condition pathways & planned reviews of need
Care Planning & Health Action Planning
Crisis / emergency planning & hospital passports
Medication
Specialist service provision

Communication

Poor bodily awareness & reduced pain responses
Difficulty communicating health needs to others
Carers’ failure to recognise pain / distress
Carers’ ability to recognise and respond to emerging health problems and/or promote health literacy
Understanding health information & making choices

Behaviour & Lifestyle

Diet
Exercise
Weight
Substance use
Sexual health
Risky behaviours/routines

Service Quality

Organisational barriers
Consent
Transitions
Health screening / promotion
Primary/Secondary services
Non health services

Each Health Inequality Indicator has been banded into five levels each of which describes the nature of impact and associated consequential level of risk – these are referred to as the Impact Levels.

The five impact levels and their associated adverse health consequences are shown below:

Impact Level Likely consequences if not addressed

Major

Health problems are associated with premature death. There may be multiple permanent injuries or irreversible significant long-term health effects. Significant and prolonged restriction of normal activities and high risk of unplanned hospital admissions.

Significant

Major injuries and periods of ill health are likely, leading to long-term incapacity/disability and potential premature death. There may be prolonged periods of inability to engage in usual routines. May require complex and prolonged treatment. Likely to have recurrent unplanned hospital admissions.

Limited

Prone to moderate injury / illness requiring skilled professional intervention. Typified by recurrent breaks in engagement with normal routines.

Recovery period following injury / illness several weeks longer than usual.

Therapeutic intervention has significantly reduced in (?) effectiveness.

Minimal

The person is likely to suffer minor injuries or illnesses which are likely to require minor intervention. There may be some intermittent short-lived (i.e. a few days) impairment of engagement in usual activities. Recovery from periods of ill health may be slightly slower than would otherwise be the case.

No impact

Minimal impact requiring no/minimal intervention or treatment.

Based on NPSA risk matrix http://www.npsa.nhs.uk/nrls/improvingpatientsafety/patient-safety-tools-and-guidance/risk-assessment-guides/risk-matrix-for-risk-managers/

For each of the Health Inequality Indicators which underlie the determinants of ill health, an individual’s exposure can be rated against the five-point impact scale.

For each Health Inequality Indicator, a series of Indicator Statements have been developed describing the severity of impact of an Inequality. These are backed up by Descriptor Statements that fully describe the impact to inform judgements as to which is the appropriate rating for any individual service user.

Each Health Inequality Indicator is given a rating between 0 and 4. Low scores indicate minimal adverse impact whereas high scores indicate a significantly detrimental impact.

This process establishes a baseline HEF profile for an individual. Outcomes are monitored through a programme of repeat profiling with individuals. This allows changes to be mapped over time. The effect of important events or changes such as moving to a new house, bereavement, changes in employment or care and treatment can be tracked through such comparative profiling.

CASE STUDY: Peter

Peter’s story

When Peter was referred to the multidisciplinary assessment and intervention team he had a history of causing extensive damage to property. He had been evicted from his last three placements because of this. He had been arrested for affray and criminal damage earlier in the year and was on police bail.

Peter had a history of verbal aggression towards support staff and a history of an assault on staff in the past. He had been previously charged by police for causing damage to a pharmacy.

He demonstrated disruptive behaviour in his supported living environment e.g. playing music loud at night, shouting and had a history of leaving his flat dirty e.g. vomit on the floor, bathroom and kitchen unhygienic.

The before and after score of the HEF profile shows how the team used the information gathered to work on all the areas that were impacting on his health inequalities at the time.

The impact on the risks related to stability in Peter’s placement is particularly important as he was at risk of being detained within the criminal justice system.

The initial assessment identified considerable issues related to engagement and communication. In order that any work could be done with Peter to improve his health and social outcomes, it was essential that strategies for better engagement and communication were put into place. Better engagement helped facilitate a move to a more appropriate environment, introduction of medication to treat ADHD and daytime involvement in valued activities. These are all examples of the benefit of the team approach to prioritising the care around the areas where the highest impact of health inequalities could be seen

Easy read HEF guide

There is an accessible guide to the HEF that can be downloaded from NDTi and a set of easy read indicators that people can use. This can be used when completing the HEF profile so the person with intellectual disabilities can be a partner in the decisions about where they are facing health inequalities. Working with the person and the people who know them best will help create a profile that everyone can understand.

http://www.ndti.org.uk/uploads/files/Health_Equalities_Framework_Accessible_Guide.pdf

http://www.ndti.org.uk/uploads/files/Easy_Read_Indicators.pdf

Family carers and the HEF

Family carers have shown a lot of interest in the HEF and its potential benefits for improving the care and outcomes for their relatives. The HEF is endorsed by the National Valuing Families Forum and is being used by many families to identify how well services are doing as a focus for review of the care their relatives receive.

How can family carers use the HEF – for an individual?

One of the benefits of the HEF is that it gives the person themselves and everyone who knows and cares about them, a tool they can use together. It can support an individual’s person-centred plan and health action plan.

Families can use the whole HEF tool or just the parts of it that seem most important for their relative.

They can look at the HEF tool together and talk about the indicators and descriptions. They can talk about it with health and social care staff. They might each have slightly different ideas or things they have noticed. They might have different ideas about the most important things to change.

Using the HEF can help with these discussions and enable shared agreements about priorities and action. Then it helps families to check what difference the actions have made.

How can family carers use the HEF – for a service or a local area?

The results of many individual HEF scores can be looked at together. This can show whether lots of people have problems with the same issues. For example, it might show that lots of people using a particular service are not having a very healthy diet. Or the family could look at the scores for people living in their area and that might show, for example, that lots of people have poor housing that is affecting their health.

Used like this, the HEF can help family carer groups, self-advocacy groups and Health Watch to talk to commissioners, the Health and Wellbeing Board and Transforming Care Boards about priorities for the whole area. Then – just like for an individual – they can discuss what actions should be taken, and use the HEF to check what difference the actions make. In this way they can use the HEF to feed into local information gathering activities on the health needs of people with intellectual disabilities in their area.

Commissioning

The HEF includes a framework for identifying evidence-based commissioning intentions and service priorities, this can be used by commissioners to summarise evidence of health inequalities locally, priorities for action, plans to reduce health inequalities, and evidence of change. It is not designed to capture detailed information, but to provide an overview. The commissioning framework is available for free download from http://www.ndti.org.uk/publications/other-publications/the-health-equality-framework-and-commissioning-guide1/

It is important that the HEF is not seen by commissioners as a tool to measure performance. The beauty of the HEF is that practitioners like it and want to use it. They can see benefits of capturing data for improving and understanding the way they work and how what they do makes a difference. The danger of the HEF being used as a ‘cost cutting’ tool, is that practitioners may be nervous of being completely honest when completing it, in case the data is coldly misinterpreted or used as a tick box exercise or a ‘stick to beat them with’. If this were to happen, the benefits of the HEF as a practice decision-making tool would be lost and with it the benefits achieved through the way the HEF impacts on clinical practice.

Primary Care and the HEF

Over recent years Primary Care has been responding to guidance on improving the health of people who have learning disabilities. In 2004 when the GP contract was introduced, some practices developed registers of people who have learning disabilities as part of their Quality and Outcomes Framework (QOF) evidence. More recently the introduction of annual health checks for people with learning disabilities in 2008 as part of a Directed Enhanced Service (DES) has helped GPs to identify poor health and unmet health needs. General practice contract changes 2014-2015 included an Enhanced Service (ES) to help reduce the incidence of co-morbidities and premature deaths of people who have learning disabilities. The enhanced service required an annual health check and the offer of a Health Action Plan to children and adults from 14 years of age.

GPs and primary care staff can use the HEF in several ways. Where a profile has been produced, the GP can use the data as part of the development of the Health Action Plan to consider where the greatest priority for intervention might be. For example, the health check may identify unmet needs. The GP will usually respond to these by introducing a clinical intervention, or making an onward referral. Prioritisation for the urgency of need is usually made on the clinical data available and will not necessarily be cross-referenced against other information.

The HEF profile shows the areas where there are the greatest health inequalities and which of these are most likely to be impacting on the person’s health and wellbeing. This additional information can help the GP’s decision-making process. Sometimes one area of health inequality is having such a big impact on the person, that they are unable to comply with health advice or intervention. Without addressing the health inequality any other intervention is unlikely to be successful.

CASE STUDY: Sam

Sam’s story

Sam was referred to the learning disabilities team following repeated periods of ill health and frequent hospital admissions.

The initial HEF showed major impact in relation to his inability to communicate about his health needs and other people’s inability to identify them. It also identified major concerns related to barriers in accessing health care and difficulties in identifying pain and warnings of ill health.

In addition to developing a unique pathway for Sam to enable better access to the hospital, the nurse involved in Sam’s care introduced a pain profile to the family. They were able to use this to identify when Sam was in pain or unwell and seek early support and intervention.

The follow-up profile shows a much lower score which suggests the impact of the health inequalities had lessened. This is reflected in the number of hospital admissions which reduced from regular admissions every 6 weeks or so to three admissions in the following year.

The success of Sam’s story led to the multidisciplinary development of a local care pathway. This was designed to reduce barriers in accessing care, by introducing a health co-ordinator and a named consultant to ensure person-centred, partnership working for people with learning disabilities and complex health needs.

Where there isn’t a HEF profile, the GP can encourage the person and/or their carer or advocate to complete one themselves, complete one within the practice, or if appropriate refer on to the community learning disability team for help with completing this.

GPs can use the data from the HEF profile to influence commissioning of services by the CCG. The data the HEF produces can help identify shortfall in services and can also show how interventions make a difference, improve the personal experience of the patient their families and carers and increase user satisfaction.

References

Atkinson D, Boulter P, Hebron C & Moulster G (2013) The Health Equalities Framework (HEF) An outcomes framework based on the determinants of health inequalities. UK Learning Disability Consultant Nurse Network

Department of Health (2012a) Transforming Care: A National response to Winterbourne View Hospital DH, London

Department of Health (2012b) Improving Outcomes and Supporting Transparency. DH, London.

Emerson E, Baines S (2010) Health Inequalities and people with learning disabilities in the UK: 2010. Learning Disabilities Public Health Observatory.

Emerson E, Baines S Allerton L & Welch V (2011). Health Inequalities & People with Learning Disabilities in the UK 2011. Learning Disabilities Public Health Observatory.

Heslop P, Blair P, Fleming P, Houghton M, Marriot A, Russ L (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) Bristol: Norah Fry Research Centre

Mencap (2007) Death by Indifference: Equal Health Care for All