Introduction

This quality standard covers the management of sickle cell acute painful episode in people in hospital from the time of presenting to hospital until the time of discharge. For more information see the topic overview.

Why this quality standard is needed

Sickle cell disease is the name given to a group of lifelong inherited conditions that affect haemoglobin. Most people affected are of African or African-Caribbean origin, although the sickle gene is found in all ethnic groups. It is estimated that there are between 12,500 and 15,000 people with sickle cell disease in the UK[1]. The prevalence of the disease is increasing because of immigration into the UK and new births.

Acute painful sickle cell episode (also known as painful crisis) is an acute condition that occurs in people with sickle cell disease. In these people red blood cells behave differently under a variety of conditions, including dehydration, low oxygen levels and elevated temperature. Changes in any of these conditions may cause the red blood cells to block the small blood vessels, restricting blood flow. This damages the tissue, which causes pain.

Acute painful sickle cell episodes occur unpredictably, often without clear precipitating factors. Their frequency may vary from less than 1 episode a year to severe pain at least once a week. Pain can vary in both intensity and duration, and may be excruciating.

Most painful episodes are managed at home, with people usually seeking hospital care only if the pain is uncontrolled or they have no access to analgesia. The primary goal in the management of an acute painful sickle cell episode is to achieve effective pain control both promptly and safely. The management of acute painful sickle cell episodes for people presenting at hospital is variable throughout the UK, and is a frequent source of complaints.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measureable quality improvements within a particular area of health or care. They are derived from high-quality guidance, such as that from NICE or other sources accredited by NICE. This quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements outlined in the following outcomes framework published by the Department of Health:

Table 1 show the outcomes, overarching indicators and improvement areas from the framework that the quality standard could contribute to achieving.

Table 1 NHS Outcomes Framework 2014–15

Domain

Overarching indicators and improvement areas

2 Enhancing quality of life for people with long‑term conditions

Overarching indicator

2 Health‑related quality of life for people with long‑term conditions

Improvement areas

Ensuring people feel supported to manage their condition

2.1 Proportion of people feeling supported to manage their condition

4 Ensuring that people have a positive experience of care

Overarching indicator

4b Patient experience of hospital care

Improvement areas

Improving people's experience of accident and emergency services

4.3 Patient experience of A&E services

Coordinated services

The quality standard for sickle cell acute painful episode specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole sickle cell acute painful episode pathway. A person-centred, integrated approach to providing services is fundamental to delivering high-quality care to people with a sickle cell acute painful episode.

The Health and Social Care Act 2012 sets out a clear expectation that the care system should consider NICE quality standards in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Commissioners and providers of health and social care should refer to the library of NICE quality standards when designing high-quality services. Other quality standards that should also be considered when choosing, commissioning or providing a high-quality sickle cell acute painful episode service are listed in Related quality standards.

Training and competencies

The quality standard should be read in the context of national and local guidelines on training and competencies. All healthcare professionals involved in assessing, caring for and treating people with a sickle cell acute painful episode should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting people with a sickle cell acute painful episode. If appropriate, healthcare professionals should ensure that family members and carers are involved in the decision-making process about investigations, treatment and care.



[1] Sickle cell acute painful episode. NICE clinical guideline 143 (2012)