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Will the NICE quality standard on multiple sclerosis be fit for purpose?

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NICE is developing the new quality standard for MS which identifies priority areas for improving NHS MS services. Amanda Croft, the MS Trust Policy Officer, explains why we have some concerns and what we're doing about it

In 2014, the National Institute for Health and Care Excellence (NICE) published its clinical guideline on multiple sclerosis, which sets out the care that people with MS should expect to receive. This year, NICE has been developing additional guidance called a ‘quality standard’. The quality standard is a short set of aspirational statements which identify the priority areas for improving MS services to help them meet the recommendations in the clinical guideline. 

The MS Trust wants the quality standard to be as relevant and effective as possible, so we have been actively involved in influencing its development. At every stage of the consultation we submitted detailed responses based on the views of people living with MS and health professionals.

At the end of September, NICE held the final meeting of the committee advising on the development of its quality standard on multiple sclerosis. We were invited to attend the meeting as an observer, meaning that we could listen but not contribute to the discussion. Following the meeting we had a number of significant concerns about the content of the quality standard and the process used to develop it. Along with the MS Society, the MS Trust has written to NICE to raise our concerns and ask them to take a number of specific steps to ensure the quality standard will be fit for purpose.

Why is the quality standard important?

The quality standard represents a chance to help drive changes in MS services that would result in real improvements for people living with MS. 

Quality standards are not targets, but everyone involved in planning, delivering and scrutinising services is required to be aware of the quality standard and take it into account. MS services will be expected to collect data to show how they are performing against the standard and increasing the quality of services. Commissioners (the people who plan and purchase NHS services to meet the needs of their local population) should use the quality standard to ensure that they are commissioning high-quality care and services. Regulators will look for evidence of how services are working towards achieving the quality standard as part of their inspection and monitoring programmes.

What are our concerns?

While we broadly support the areas included in the draft quality standard we are concerned that:

  • important issues that will help improve the quality of services for people with MS are missing from the quality standard, particularly ensuring that everyone with MS has access to an MS nurse specialist with a sustainable caseload
  • the advisory committee for the quality standard did not include an MS neurologist, limiting the quality of advice on which the standard has been based
  • it is not clear how stakeholder feedback, including the suggestions for additional quality statements, has been taken into account
  • in many cases, the way the statements will be measured does not match what they are trying to achieve and will not help services understand and address the barriers to quality improvement
  • important definitions and clarifying information are being dealt with outside of the public consultation process.

We believe that the quality standard can and should do more for people with MS. As one of the most important tools for improving the quality of services for people with MS, the quality standard must get it right. That means identifying the right priorities and measuring progress against them in the right way. It means basing those decisions on the full expertise and advice of the MS community. And it means being transparent about how that advice has been taken into account.

Without acceptance by the MS community, the quality standard risks being redundant. And if it fails to prioritise the right issues to ensure that services are improved for everyone with MS in a fair and equitable way, it risks undermining the very reason it is needed.

What are we doing about it?

Following the final meeting of the NICE advisory committee, we have written to NICE to raise our concerns and ask them to take a number of specific steps to address them:

  • consult on the definition of ‘expertise in MS’ to be included in the final quality standard
  • reconsider the case for a separate quality statement on access to an MS nurse specialist with a sustainable caseload
  • discuss and review the draft quality standard with the MS Advisory Group of the Association of British Neurologists ahead of publication
  • meet with us to discuss more suitable ways of measuring each quality statement
  • explain how stakeholder consultation responses have been taken into account, and how they have influenced the final quality standard

We will keep you posted on what happens next.

NICE clinical guidelines

NICE clinical guidelines are evidence-based recommendations about the care that people with specific medical conditions should expect to receive from healthcare professionals.  They are relevant to clinicians, health service managers and commissioners, as well as to patients and their families and carers. Healthcare professionals, managers and commissioners who plan and deliver NHS services are expected to take the guideline into account.  

NICE quality standards

NICE quality standards are short sets of aspirational statements that sit underneath the clinical guideline. They are designed to drive measurable quality improvements by identifying the changes that would make the biggest difference to services for people living with a particular health condition. Quality standards are not targets, but health and care services are expected to have regard to them in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Quality standards are meant to be aspirational but achievable.