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ME services in ‘dire’ state after death of specialist nurse

Services for people in Scotland with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been “dire” since the death of the country’s only specialist nurse, campaigners have warned.

The charity ME Action Scotland has spotlighted the need for health boards across the country to invest in ME/CFS services and ensure that all patients have access to a specialist nurse.

“We’ve tried so hard but couldn’t find anyone to replace Keith because no one else has that knowledge”

Pamela Binny

ME/CFS is a long-term condition which affects many different systems in the body and causes extreme tiredness among other symptoms.

The severity of the condition ranges, but those with the most severe kind can be left housebound for months or years at a time.

In Scotland, it is estimated that around 20,000 people may be affected by ME/CFS.

Despite this, the care of people with the condition is often left for GPs, because there are no specialist consultants in Scotland and the only specialist nurse died last year.

Keith Anderson had been running the specialist service through his employer NHS Fife since 2004, but since his death his role has not been replaced.

Pamela Binny, a retired nurse and volunteer for ME Action Scotland, told Nursing Times that Mr Anderson had become an expert on the condition “through his own efforts”.

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“It’s very much down to the individual developing their own interest in it and working almost below the radar in order to deliver any sort of support,” she explained.

“Which is why our fight is so hard – we’ve tried so hard but couldn’t find anyone to replace Keith because no one else has that knowledge.”

Ms Binny was a nurse for 37 years before she retired to take care of her son who has severe ME/CFS.

She noted that her son had been diagnosed quickly when he was first seen and put it down to the fact that the GP was based in Fife and had been educated by Mr Anderson.

“[Mr Anderson] did his best to educate GPs and other professions, but he was having to manage these huge numbers [of patients] that he was seeing,” Ms Binny added.

Despite being a lifeline for many people living with ME/CFS, Mr Anderson was limited in what he could do as just one healthcare professional trying to run services.

Pamela Binny

That is why ME Action Scotland has been calling for health boards across the country to have dedicated ME/CFS services which are led by a multidisciplinary team of specialists in the condition.

Ms Binny said: “Keith was a lone worker, but what we really want to see in place is a whole team of people trained in ME who are doing it as a service.”

In the absence of nurse specialist, ME Action Scotland has made the case for educating all nurses on the signs and symptoms of ME/CFS, so that they are able to support patients with the condition as they come across them.

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The charity has teamed up with Action for ME, the ME Association and the 25% ME Group to ensure more healthcare professionals understand the condition.

Backed by Scottish Government funding, the organisations are currently promoting a free CPD-accredited learning module on ME/CFS which healthcare professionals can access.

Ms Binny said: “It addresses all the main points: the importance of early diagnosis, the importance of recognising the symptoms and all the tests you can do.”

Meanwhile, Janet Sylvester, who co-founded ME Action Scotland, told Nursing Times that the situation in Scotland was “dire”.

Ms Sylvester set up the charity with her daughter, who has ME/CFS, to campaign for there to be a concrete care pathway for people with the condition in Scotland.

Janet Sylvester

She explained that, currently, many families were “left to their own devices” when it came to ME/CFS care.

“You’re very much scrabbling around for information and for any contacts you can make,” she said.

A 2022 report by the Scottish Government found that more than half of NHS boards in Scotland did not have specific ME referral pathways.

The report also noted that the implementation of the National Institute of Care Excellence’s (NICE) most recent ME/CFS guidelines was “varied” due to lack of resources and staff.

In the guidance, published in 2021, NICE said that graded exercise therapy should not be used to treat patients with ME/CFS as it can worsen the condition and that cognitive behavioural therapy should not be considered a cure.

Graded exercise therapy aims to gradually increase a patient’s physical activity levels over time.

Ms Sylvester, whose daughter was treated with graded exercise therapy when she was first diagnosed, said the treatment “worsened her [daughter’s] symptoms significantly”.

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“We think to this day this had an impact on her,” she said.

Ms Sylvester argued that if health boards were able to implement the NICE guidelines in Scotland, then perhaps health professionals would have “a much higher awareness of ME”.

She said: “It’s very frustrating because we don’t have the NICE guidelines and we don’t have people trained according to the NICE guidelines.”

When asked to respond to ME Action Scotland’s concerns, a spokesperson for Fife Health and Social Care Partnership told Nursing Times that Mr Anderson’s service was paused “because there is no suitably experienced specialist nurse in ME/CFS to provide cover”.

They said: “Temporary arrangements have been put in place to enable GPs to refer patients with ME/CFS to other services for those with long-term conditions, mirroring the provision available in all other health boards in Scotland.

“There continues to be a shortage of specialist ME/CFS trained health professionals across the UK.

“Despite this, we are reviewing our model for service delivery to continue the excellent work initiated by our previous specialist nurse.”

Meanwhile, a Scottish Government spokesperson echoed this and said NHS Fife had “no plans to close their service”.

They added: “Service provision is the responsibility of NHS boards and we expect all boards to provide care that is person-centred, effective and safe.

“Our recent analysis of health board data on ME/CFS care has given a clearer picture of service provision in Scotland, and we are carefully considering this with the aim of identifying areas where there is the potential to support service development.”

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