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MS nurses thank charity for rejecting latest NICE quality standard

The MS Trust says the new quality standard issued by NICE neglects to mention specialist MS nurses and overlooks people with long-term conditions

The failure of a National Institute for Health and Care Excellence (NICE) quality standard on Multiple Sclerosis to mention specialists nurses has been criticised by the MS Trust, which is refusing to endorse the guideline, published yesterday (Thursday 14).

Despite having worked with NICE on the quality standard, the charity has decided that it ‘failed to recognise the vital importance of MS specialist nurses (MSSNs)’. It added that the standard focuses too closely on newly diagnosed patients or those with relapsing, remitting conditions, and that it lacks transparency and input from MS experts.

A NICE spokesperson said it is disappointed at the trust's decision not to endorse the standard.

An MS Trust spokesperson claimed that many MS specialist nurses had contacted the charity to express their thanks. Among them was Hillingdon Hospitals NHS Foundation Trust MS rehabilitation clinical nurse specialist Joan Bradley, who said: ‘Because the Quality Standard does not specifically mention specialist nurses, some trusts may try to cut costs by cutting specialist nurse posts.

‘We need to campaign for specialist MS services and the important contribution of MS specialist nurses.’

MS Trust’s director of service Amy Bowen explained that her group had offered the findings of its Generating Evidence in Multiple Sclerosis Services (GEMSS) report to NICE because it ‘showed the pivotal role they played in providing high-quality care for patients’.

She added: ‘We believe that, as a whole, the document is flawed and does not address the biggest challenges facing MS services today.

‘It fails people living with MS and the health professionals who support them. We are now calling on NICE to address these concerns.’

In response, a spokesperson for NICE said it was ‘disappointing that the MS Trust’s comments aim to undermine this important new standard’.

They added: ‘NICE ensures that the development of its quality standards is open and transparent and that stakeholders have the opportunity to contribute.

‘The guideline did not recommend MS specialist nurses, but talks about ‘healthcare professionals with expertise in MS.

‘Our Quality Standards Advisory Committee is not set up to review new evidence, so the standard can include only NICE guideline recommendations and NICE-accredited guidelines as sources.

‘As previously explained to the MS Trust, this means that new evidence, such as that arising from their GEMSS project, cannot be included at this point.

‘However, NICE guidelines are routinely reviewed so that relevant evidence can be taken into account, and anyone with an interest can suggest that a quality standard should be updated.’

Read the full quality standard here

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