A “complete overhaul” of the benefits available to those with long-term health conditions is due within the next two years after a tribunal ruling prompted fresh scrutiny of how sufferers of chronic fatigue syndrome and similar illnesses are supported.
Social Security Minister Lyndsay Feltham is planning to bring regulations to the States Assembly at the end of the month which would be “the first stage in a complete overhaul of the benefits that support those with a long-term health condition”.
This initial stage is due to be followed by “detailed work” on the guidelines next year, with the goal of having the new system in place in 2027.
It comes after a Social Security Medical Appeal Tribunal case raised questions over whether the current guidelines – which haven’t been updated in a decade – do enough to help islanders who suffer from chronic illnesses such as long covid and chronic fatigue.
The case saw a chronically ill islander who felt his “whole body shutting down” assessed as less incapacitated than if he had lost a thumb.
The man suffered from chronic fatigue syndrome and received long-term incapacity benefits since April 2024, having suffered from long covid fatigue since 2020.
A long-term incapacity allowance assessment – in which a doctor ranks to what extent someone’s illness or condition affects them – initially gave the man a score of 11%, and a second doctor said he was 20% affected.
This placed him at the top end of the “mild” category and entitled him to 20% of the Long Term Incapacity Allowance, or £59.15 per week.
In comparison, someone who had lost a thumb was assessed at 30% loss of faculty, which would amount to £88.73 per week.
The myalgic encephalomyelitis patient took the case to the Tribunal, arguing that the guidelines for chronic fatigue were “less generous than other guidelines for conditions which have a lesser effect on everyday functioning”.
Panel chair Advocate Simon Thomas, wrote: “The real issue in this appeal, it seems to us, concerns the CFS/ME guideline and whether it is fit for purpose when dealing with cases of post-viral syndrome such as long covid, which is relatively unknown and presents with a multiplicity of symptoms.”
Though the man’s appeal was dismissed, the Tribunal asked the Health Department to provide the guidance, asking “to what extent consideration has been given to reviewing it” to take into account post-viral illnesses with “a multiplicity of symptoms”.
Deputy Louise Doublet, who chairs the Health and Social Security Scrutiny panel, added that long covid cases were rising – with more than half of those diagnosed with long covid considered disabled by the condition.
She said that she was “concerned” that Jersey’s long covid clinic had been closed, adding: “I think that there needs to be more certainty around the care pathways for chronic conditions like long covid”.
Following the tribunal’s decision, the Social Security Department told Express that it was “satisfied” that the current guidelines allow sufferers of chronic fatigue syndrome and similar conditions to get a “good and fair award”.