Specialist nurses who treat patients with multiple sclerosis have warned that they are increasingly being put under pressure to help people with the condition to claim disability benefits.
They also cautioned that their lack of expertise in the area risked patients being harmed by missing out on benefits, like Personal Independence Payment and Employment and Support Allowance.
“Nurses are often doing extended hours to fit this in, without it being recognised”
A survey of more than 100 nurses by the charity the MS Society has revealed that they are being put under significant pressure to help their patients with benefits claims.
It found 90% of the nurses said they provided supporting evidence for benefits applications, of which 58% said they worked outside of working hours to provide this evidence.
In addition, 75% of respondents said providing evidence increased their workload, either a moderate amount or a lot, noted the charity.
Meanwhile, 83% of everyone who answered said their patients asked for help with filling in benefits applications.
The charity said it knew anecdotally that many people with MS asked their specialist nurse for evidence to support their disability benefits applications.
“On average I’m getting asked to do this five times a week, it’s overwhelming”
Johnny Dela Cruz
However, MS nurses had told the charity they often struggled with providing this evidence, and it added strain to their already overstretched workloads, warned the organisation.
It stated: “We’re concerned this process isn’t working. Specialist healthcare professionals aren’t given proper guidance on what and how evidence should be provided.
“This is leading to too many people with MS losing or being denied vital benefits they’re rightly entitled to,” it said.
Genevieve Edwards, the charity’s director of external affairs, said: “Our survey shows helping with benefits is a significant issue for MS nurses, who also see first-hand how damaging the assessment process is.
“We’re urging the government to improve the process so MS nurses can concentrate on providing the specialist care only they can deliver,” she said. “Having MS is hard enough. It shouldn’t be made harder by a welfare system that doesn’t make sense.”
“The system must be fit for purpose and clear guidance, education and time must be given”
The charity also quoted several nurses themselves on the issue. Helen Davies, an MS specialist nurse at St Helier Hospital in Sutton, said: “On average I probably see one patient a week for whom their biggest concern is their benefits application, and this will take up most of their 30 minute clinic appointment.
“I usually have to spend this time discussing coping strategies for the anxiety this causes them. It’s so frustrating to see patients go through this unnecessary stress and upset,” she said.
Johnny Dela Cruz, an MS specialist nurse at Charing Cross Hospital in London, said: “I see the effects of patients not being able to get benefits. One had to stop his treatment because a cut to his benefits meant he could no longer get to the hospital.
“I feel a lot of pressure to make sure I do as much as I can to help my patients. But on average I’m getting asked to do this five times a week, it’s overwhelming,” he said.
Charity calls for end to ‘systemic neglect’ of lung disease
Debbie Quinn, policy advisor at the UK MS Specialist Nurse Association, said: “Nurses are often doing extended hours to fit this in, without it being recognised.
“This can impact their own family life and wellbeing, and we need to keep our nurses fit and well so they can suitably look after others,” she stated.
Meanwhile, Wendy Preston, head of nursing practice at the Royal College of Nursing, said: “When there are only a couple of hundred nurses who specialise in MS across the country, their time becomes extra precious.
“They gladly help their patients to get the full range of support they require but a bureaucratic and cumbersome benefits system helps nobody,” she noted.
Ms Preston said that ministers and policymakers should not ignore nursing experts who said it was leading to “people missing out when they need help most”.
She added: “The system must be fit for purpose and clear guidance, education and time must be given to those who can support applications.”