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Charity refuses to endorse NICE guideline over nurse role

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A charity has criticised a newly-published set of standards on providing quality care for multiple sclerosis for failing to recognise the key role of nurses in treating the long-term condition.

The Multiple Sclerosis Trust claimed the quality standard were “too focused” on the relapsing-remitting form of the condition and “failed to recognise the importance” of specialist nurses.

The charity wanted the wording of the document to differentiate nurses from other health professionals, based on recent findings from its ongoing research into the importance of nursing specialists to patients with MS – the GEMSS project.

It also claimed the development process used by the National Institute for Health and Care Excellence in drawing up the standards was “flawed” and lacked transparency.

As a result, the MS Trust said it had “chosen not to endorse” the Quality Standard for MS, which was published on Friday by NICE.

“It fails both people living with MS and the health professionals who support them”

Amy Bowen

The charity noted that it was closely involved in the development process for the standards and had contributed to all stages of scoping and consultation carried out by NICE.

In a statement it said it welcomed “elements” of the NICE standard, some of which would be a “real step forward in ensuring that people with MS get the specialist input they need”.

But the charity added that, after careful consideration, it had decided “we could not endorse the final document” and identified three main areas of concern:

  • The quality standard is too focused towards those who are newly diagnosed and/or have relapsing remitting MS and could drive further inequities, particularly for people with progressive MS who make up around half the total MS population
  • The quality standard fails to recognise the vital importance of MS specialist nurses to people living with MS, in light of recently published evidence about the value of multiple sclerosis specialist nurses
  • The process used to develop the quality standard was flawed, lacking transparency, legitimacy and buy in from MS specialist neurologists and the wider MS community

Amy Bowen, director of service development at the MS Trust and a nurse herself, said: “We believe that, as a whole, the document is flawed and does not address the biggest challenges facing MS services today.

“It fails both people living with MS and the health professionals who support them. We are now calling on NICE to address these concerns,” she stated.

The row over specialist nurses in the quality standard follows a similar disagreement between the two organisations about the wording of the earlier NICE guideline, on which the standard is based.

The institute said it was “disappointed” and accused the charity of trying to “undermine” the quality standard.

A spokesman said: “NICE quality standards provide key markers of quality improvement, and are developed using an entirely open and transparent process with robust stakeholder consultation and all meetings held in public.

Amy Bowen

Amy Bowen

Amy Bowen

“The new NICE quality standard on multiple sclerosis highlights high-priority areas for quality improvement in the diagnosis and treatment of this debilitating condition, so it’s disappointing that the MS Trust’s comments aim to undermine this important new standard,” he said.

He noted that the quality standard – like those developed by NICE for other conditions – was intended to sit alongside its more comprehensive guidelines and these existing documents were used as the primary source in prioritising factors deemed most important to improving care quality.

“The MS Trust had hoped to for MS specialist nurses to be included specifically in the standard, but the guideline did not recommend MS specialist nurses but talks about ‘healthcare professionals with expertise in MS’,” said the spokesman.

“In one of our definitions of a healthcare professional with expertise in MS, we do say ‘such as an MS nurse, depending on the local service organisation’,” he said. “NICE quality standards need to maintain integrity with the guideline.”

“It’s disappointing that the MS Trust’s comments aim to undermine this important new standard”

NICE spokesman

He added that the committee responsible for drawing up quality standards was “not set up to review new evidence” outside of existing NICE guidance and that findings from the charity’s GEMSS project on MS specialist nurses could not be included “at this point”.

However, he noted the charity’s research and other relevant evidence could be “considered as part of the annual review process” of the MS quality standard.




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