Introduction

This quality standard covers the diagnosis and management of multiple sclerosis (MS) in adults (18 years and over). For more information see the multiple sclerosis topic overview.

Why this quality standard is needed

MS is an acquired chronic immune‑mediated inflammatory condition of the central nervous system, affecting both the brain and spinal cord. People with MS typically develop symptoms in their late 20s, experiencing visual and sensory disturbances, limb weakness, gait problems, and bladder and bowel symptoms. They may initially have partial recovery, but over time develop progressive disability.

The cause of MS is unknown but is believed to be related to an abnormal immune response to environmental triggers in people with a genetic predisposition. The initial phase of inflammation is followed by a phase of progressive degeneration of the affected cells in the nervous system.

MS affects approximately 100,000 people in the UK. It is the commonest cause of serious physical disability in adults of working age.

The most common pattern of disease is relapsing–remitting MS (RRMS), in which periods of stability (remission) are followed by periods when symptoms are worse (relapses). About 85% of people with MS have RRMS at onset. Around two‑thirds of people who start with RRMS may develop secondary progressive MS (the disability gradually gets worse over time but this is not related to any relapses, which become less frequent or stop completely). About 10–15% of people with MS have primary progressive MS. Symptoms develop gradually and get worse over time, but these people never experience relapses and remissions.

MS can lead to a high level of disability with considerable personal, social and economic consequences. People with MS may live for many years after diagnosis with significant impact on their ability to work, as well as an adverse and often highly debilitating effect on their quality of life and that of their families.

Management of MS includes treatment to reduce the frequency and severity of relapses, managing symptoms, and lifestyle changes to manage relapses or disease progression.

The quality standard is expected to contribute to improvements in the following outcomes:

  • patient experience of the diagnostic process and support

  • frequency of relapse

  • severity of relapse

  • emergency hospital admissions

  • length of hospital stay

  • severity of disability

  • carer quality of life.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measurable improvements in the 3 dimensions of quality – patient safety, patient experience and clinical effectiveness – for 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 3 outcomes frameworks published by the Department of Health:

Tables 1–3 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.

Table 1 NHS Outcomes Framework 2015–16

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 (ASCOF 1A**)

Improving functional ability in people with long‑term conditions

2.2 Employment of people with long‑term conditions (ASCOF 1E** and PHOF 1.8*)

Improving quality of life for people with multiple long‑term conditions

2.7 Health‑related quality of life for people with three or more long‑term conditions (ASCOF 1A**)

4 Ensuring that people have a positive experience of care

Overarching indicator

4a Patient experience of primary care

i GP services

4b Patient experience of hospital care

4c Friends and family test

4d Patient experience characterised as poor or worse

i. Primary care

ii. Hospital care

Improvement areas

Improving people's experience of outpatient care

4.1 Patient experience of outpatient services

Improving people's experience of integrated care

4.9 People's experience of integrated care (ASCOF 3E**)

Alignment with Adult Social Care Outcomes Framework and/or Public Health Outcomes Framework

* Indicator is shared

** Indicator is complementary

Table 2 The Adult Social Care Outcomes Framework 2015–16

Domain

Overarching and outcome measures

1 Enhancing quality of life for people with care and support needs

Overarching measure

1A Social care‑related quality of life*

Outcome measures

People manage their own support as much as they wish, so they are in control of what, how and when support is delivered to match their needs

1B Proportion of people who use services who have control over their daily life

1D Carer‑reported quality of life

3 Ensuring that people have a positive experience of care and support

Overarching measure

People who use social care and their carers are satisfied with their experience of care and support services

3A Overall satisfaction of people who use services with their care and support

3B Overall satisfaction of carers with social services of carers.

Placeholder 3E: The effectiveness of integrated care*

Outcome measures

People know what choices are available to them locally, what they are entitled to, and who to contact when they need help

3D The proportion of people who use services and carers who find it easy to find information about support

Aligning with NHS Outcomes Framework and/or Public Health Outcomes Framework

* Indicator complementary

Table 3 Public Health Outcomes Framework for England, 2013–16

Domain

Objectives and indicators

1 Improving the wider determinants of health

Objective

Improvements against wider factors that affect health and wellbeing and health inequalities

Indicators

1.8 Employment for those with long‑term health conditions including adults with a learning disability or who are in contact with secondary mental health services*

1.9 Sickness absence rate

2 Health improvement

Objective

People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities

Indicators

2.13 Proportion of physically active and inactive adults

2.23 Self-reported well‑being

2.24 Injuries due to falls in people aged 65 and over

Alignment with NHS Outcomes Framework and/or Adult Social Care Outcomes Framework

* Indicator shared with the NHS Outcomes Framework

Patient experience and safety issues

Ensuring that care is safe and that people have a positive experience of care is vital in a high‑quality service. It is important to consider these factors when planning and delivering services relevant to MS.

NICE has developed guidance and an associated quality standard on patient experience in adult NHS services (see the NICE pathway on patient experience in adult NHS services), which should be considered alongside this quality standard. They specify that people receiving care should be treated with dignity, have opportunities to discuss their preferences, and are supported to understand their options and make fully informed decisions. They also cover the provision of information to patients and service users. Quality statements on these aspects of patient experience are not usually included in topic‑specific quality standards. However, recommendations in the development sources for quality standards that affect patient experience and are specific to the topic are considered during quality statement development. Statement 1 covers the provision of information and the offer of support at the time of diagnosis. Statements 9, 12 and 14 from the NICE quality standard on patient experience in adult NHS services are particularly relevant to this topic, and relate to statements 3 and 5 in this quality standard.

Coordinated services

The quality standard for MS specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole MS care pathway. A person‑centred, integrated approach to providing services is fundamental to delivering high‑quality care to adults with MS.

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 MS 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 health, public health and social care practitioners involved in assessing, caring for and treating adults with MS should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard. Quality statements on staff training and competency are not usually included in quality standards. However, recommendations in the development source(s) on specific types of training for the topic that exceed standard professional training are considered during quality statement development.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting adults with MS. If appropriate, healthcare professionals and social care practitioners should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.