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Improving acute care of people with learning disabilities

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This article reports on the development of a patient passport system for use by people with learning disabilities entering acute care settings. The passport contains information on patients’ individual needs to help hospital staff with the care planning process. The aim is to help patients take part in the decision-making process where possible, as required by the Mental Capacity Act 2005, and to improve their experience of acute care.

 

Abstract

Kent, A. (2008)

Improving acute care of people with learning disabilities. This is an extended version of the article in Nursing Times; 104: 5, 32-33.

This article reports on the development of a patient passport system for use by people with learning disabilities entering acute care settings. The passport contains information on patients’ individual needs to help hospital staff with the care planning process. The aim is to help patients take part in the decision-making process where possible, as required by the Mental Capacity Act 2005, and to improve their experience of acute care.

Author Allyson Kent, BSc, RNMH, is specialist practitioner and head of profession, learning disability nursing, Humber Mental Health Teaching NHS Trust.

Background

Numerous studies have highlighted that people with learning disabilities have greater unmet healthcare needs than the general population (see Box). The evidence base is well established, with areas of concern highlighted in the literature.

However, while this is widely known within specialist services, it receives little or no attention within primary or secondary healthcare services or as part of commissioning arrangements (NHS Quality Improvement Scotland, 2006; Brown, 2005; Sowney and Barr, 2004). Mencap (2004) found that fewer people with learning disabilities visit their GP than the general population to discuss physical health.

The quality and outcomes framework (British Medical Association, 2006) only requires GPs to hold a learning disability register - they do not have to monitor the health of individuals in this group. This may result in them facing greater health inequalities, making them more likely to be admitted into acute services in an emergency. Death by Indifference (Mencap, 2007) highlighted the limited communication between primary, acute and specialist services, which further exacerbates this problem.

The National Patient Safety Agency (2004) identified that people with learning disabilities were vulnerable in acute hospital settings and at greater risk of adverse incidents. Illness is often misdiagnosed or undiagnosed because many acute and primary care staff have little or no knowledge of the healthcare needs of these clients or of the specialist services available to support them. This situation can be compounded if patients have communication difficulties.

When people with learning disabilities are admitted into acute hospitals, communication and issues of consent are two key areas of concern for patients, carers and healthcare professionals (Mencap, 2007; NPSA, 2004). Further areas of concern are highlighted in the literature (see Box).

Areas of concern

  • Poor communication
  • Limited skills among hospital staff in communicating with people with learning disabilities
  • Inadequate information about the person before admission
  • Inadequate information about hospital procedures
  • Poor transmission of information within the hospital
  • Poor information at discharge
  • Limited information about choices within hospital, for example around food

Sources: Mencap, 2007; NHS QIS, 2006; Mencap, 2004; NPSA, 2004; Cumella and Martin, 2000.

Fear and distress

This can be on the part of patients, their families and hospital staff. Hospital staff may not see it as part of their job to address the specific and individual needs of people with learning disabilities in this setting. Source: Cumella and Martin, 2000.

Experiences reported by carers

  • Needing to stay with the person to ensure food/drinks and medication were given
  • Needing to stay over the 24-hour period
  • Being fearful of leaving patients in the care of the acute hospital
  • Feeling they were expected to stay

Sources: NPSA, 2004; Cumella and Martin, 2000.

Poor quality of care

  • Failure to give care in patients’ best interests
  • Heavy sedation throughout care episodes
  • Lack of adapted facilities
  • Malnutrition and dehydration; assumptions that patients were refusing food and drink
  • Low attention to epilepsy
  • Failure to prescribe appropriate medications
  • Boredom that led to challenging behaviour
  • Failure to manage pressure ulcers
  • Lack of appropriate attention to continence, leading to patients either wetting the bed or being catheterised

Sources: Mencap, 2007; Cumella and Martin, 2000.

Issues within the hospital

  • Poor information on admission
  • Limited staff training
  • Dealing with challenging behaviour and recognising that this is often the result of pain and/or fear
  • Consent issues
  • Need for increased education and contact with people with learning disabilities and improved attitudes towards them

Sources: Mencap, 2007; Disability Rights Commission, 2006; Mencap, 2004; Glasby, 2002; Cumella and Martin, 2000

The NHS Plan (Department of Health, 2000) promised to improve the patient experience for all by designing the NHS around patients’ needs. However, Mencap has reported that the care of people with learning disabilities does not always take account of their specific needs. For example, they are more likely than the general population to be given psychotropic medications, use medical hospital services rather than primary care and to be discharged early. They are also at greater risk of premature death and a range of diseases and conditions including:

  • Certain cancers;
  • Cardiac conditions;
  • Respiratory problems;
  • Sensory impairment;
  • Dementia;
  • Mental health problems;
  • Obesity and malnutrition;
  • Thyroid dysfunction.

Despite these issues, people with learning disabilities are less likely to receive health checks, cancer screening, sight and hearing tests or health promotion advice or to use surgical hospital services (Mencap, 2004).

Humber Mental Health Teaching NHS Trust has been working closely with Hull and East Yorkshire Hospitals NHS Trust to improve the patient experience for people with learning disabilities and their carers, supporting them to give informed consent where possible or to ensure that treatment is in their best interests. We have been working together for over five years, developing strong working relationships at all levels of the organisations.

Locally people with learning disabilities are often admitted to acute wards through A&E or outpatient departments with little or no information on their previous medical history or how they normally present. This makes it difficult for nursing and medical staff to assess them adequately. The situation is exacerbated when these patients are cared for by inexperienced members of staff.

Disability equality duty

Since December 2006 there has been a legal duty on all public sector organisations to promote equality of opportunity for all people with disabilities. All NHS trusts need to demonstrate that they provide services to all people irrespective of their disability.

In addition, as part of their risk management standards, they must show how they care for people who are deemed vulnerable. The patient passport (see Fig 1 for an example) is a tool developed to support acute services in fulfilling this duty and improve the care and treatment of vulnerable people in hospital.

Patient passport

The patient passport can be completed: with the person/carers in their own home; by learning disability services staff before admission to hospital; within primary care; at pre-assessment; or in the acute hospital on admission. Unlike an official passport it is not intended to be kept for years. Instead it provides a ‘snapshot’ of the person at the time.

The passport is a simple tool to inform acute staff about important aspects of a person’s life, to help them to ‘get it right first time’ as required by The NHS Plan (DH, 2000). It can hold a wealth of information but need not necessarily hold all patient details. It can also indicate to acute staff where further information can be obtained if required, for example: ‘Please see my epilepsy management plan; the person who knows me best is Fred Bloggs.’

The passport is a double-sided A4 document that articulates the important aspects of individual patients’ lives. It seeks to reduce their vulnerability by making a connection between the people who know them best, such as parents, carers, community nurses or key workers, with those who know them least - acute staff. It provides key information such as known medical conditions and details of any medications taken, which can help acute staff to understand patients’ needs and therefore develop appropriate care plans. It is vital that these details are checked with patients’ GPs on admission to ensure accuracy.

The patient passport has been developed on a database but is available on CD-ROM and can be downloaded and printed out on paper so it can be shared with acute staff. It provides guidance for completion and holds a large amount of information that is known within specialist learning disability services but may not be widely known within mainstream services. It also includes details of relevant websites. The CD-ROM provides access to a wealth of literature on consent, which is a real area of concern for people with learning disabilities and their carers.

The passport database is held in one trust with password-protected access to it from the other. This ensures that both services work with only one passport, which staff in either trust can update at any time.

We are working to make the system accessible within primary care so the tool is available from the beginning of the patient journey. This would ensure that all who are involved in the care and treatment of people with learning disabilities understand patients’ individual needs.

The Mental Capacity Act 2005

One aim in developing the passport was to enable the trust to meet the requirements of the Mental Capacity Act 2005. This provides the legal framework to protect vulnerable people who lack the capacity to make decisions for themselves, and to help them to take part in the decision-making process as far as they are able (Department for Constitutional Affairs, 2006). The patient passport lists the five principles of the act:

  • All adults have the right to make their own decisions and must be assumed to have capacity to do so unless proved otherwise;
  • People must be given all appropriate help to make their own decisions before anyone concludes they cannot do so;
  • People must retain the right to make what might be seen as eccentric or unwise decisions;
  • Anything done for or on behalf of people without capacity must be in their best interests;
  • Anything done for or on behalf of people without capacity should be the least restrictive of their basic rights and freedoms.

The act makes it a criminal offence to neglect the needs of people who lack capacity. This may be through a single action or omission or a series of repeated actions or omissions and can include ignoring a person’s medical or physical needs, failing to provide necessary healthcare or withholding medications or food and drink (DCA, 2006).

Decision-making and best interests

As a nurse leader in learning disability services, I became aware of an increasing number of adverse incidents in acute services, with proposed care and treatment not always being in a person’s best interests. Locally, a consent pathway was developed to help staff understand the legal framework and provide care and treatment in the best interests of people lacking capacity. This received positive feedback and has subsequently evolved into two pathways:

  • The first helps patients to think through their decision-making (Fig 2);
  • The second assists staff to work through the best interests process in a lawful manner (Fig 3).

The pathways have been approved for use across the acute trust, the specialist mental health and learning disability trust and both local authorities in the area. They are available within the patient passport and as posters on all wards and departments across all four service providers.

Trust and respect

The patient passport has enabled learning disability services staff to help nursing and medical staff at the acute trust to understand the additional healthcare needs of people with learning disabilities.

We also hold bi-monthly meetings where we review both policy drivers and the reality of care delivery within the acute hospital setting. This process has raised awareness of the needs of this patient group at all levels of the organisation. Open and honest discussions enable both trusts to take responsibility for implementing agreed actions in the clinical setting.

A key activity in recent bi-monthly meetings has been to review patient journeys. These may have been positive or negative, since we recognise that there is learning from both and, importantly, feedback that changes practice in the clinical arena.

Examining negative experiences was initially challenging. However, by focusing on the facts and individual needs of the patient concerned, we identified why adverse events occurred and together looked at what could be done differently in future.

By developing mutual respect and trust, and seeking to learn rather than apportion blame, with ongoing review we have ensured that these discussions have changed practice. This process has also made a positive difference to the lives of people with learning disabilities.

Conclusion

The health inequalities faced by people with learning disabilities are clear. The patient passport is a simple tool that articulates people’s individual needs and seeks to bridge the communication gap that often exists when patients are admitted to acute services.

If we are to reduce health inequalities and ensure that their needs and those of other vulnerable people - such as older people and those with mental health problems - are met, all NHS staff need to understand and take responsibility for meeting the additional needs of these groups.

Learning disability nurses can provide leadership in this by working with this group and their carers, service commissioners and colleagues in acute trusts and local authorities to ensure patients receive care where their individual needs are respected and which is in their best interests.

The patient passport has evolved as a result of listening to the needs of people with learning disabilities, parents and carers and acute staff to ensure that it meets everyone’s needs. Early feedback has been positive - parents and carers are able to articulate the person’s individual needs, while acute staff find it clear and simple. However, the tool is yet to be formally evaluated, which is planned for later this year.

 

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