MS nurses criticise ‘cumbersome’ disability benefits system
They say they are under pressure to help patients with benefit applications.
Nurses have criticised the “cumbersome and bureaucratic” system for disability benefits amid warnings that patients with multiple sclerosis are missing out on vital support.
Specialist MS nurses say they are under increasing pressure to help patients with benefit applications, as well as with anxiety and stress before their assessments.
A survey of more than 100 MS nurses by the MS Society found 90% said they provided patients with evidence for benefits applications, many of them doing so outside office hours.
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 multiple sclerosis 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.
“Ministers and policymakers cannot ignore the experts who say it is leading to people missing out when they need help most.
All of my patients going through this find it very stressful and some have told me how they’ve lost sleep over their applications, or had increased anxiety Specialist MS nurse Joanna Smith
“The system must be fit for purpose and clear guidance, education and time must be given to those who can support applications.”
As part of the application process for disability benefits such as Personal Independence Payment (PIP) and Employment and Support Allowance (ESA), people are encouraged to include supporting evidence explaining the impact of their condition.
People with MS have told the MS Society they would normally ask their MS nurse for help with this.
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.
“So 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.”
Joanna Smith, a specialist nurse in south-west London, said: “We’re not given any guidance about what to put in these letters, and it’s not a simple process.
“All of my patients going through this find it very stressful and some have told me how they’ve lost sleep over their applications, or had increased anxiety.
“Both stress and anxiety makes MS symptoms like fatigue and pain worse.”
Debbie Quinn, policy adviser at the UK MS Specialist Nurse Association, said nurses’ ability to deliver the best possible care was “being impacted by the paperwork we’re being asked to do for benefits claims”.
Genevieve Edwards, director of external affairs at the MS Society, said: “MS nurses are usually the first point of contact for treatment, care and support, so it’s no surprise people with MS turn to them for help with their benefits claims.
“But this system is in disarray because specialist healthcare professionals aren’t given enough clarity around how and what information should be provided.
“This is leading to too many people being denied support they are rightly entitled to.”
A spokeswoman for the Department for Work and Pensions said: “We want to ensure that we get decisions right first time around, so it’s important we have the necessary evidence to make an accurate decision.
“We continue to engage with stakeholders, such as the MS Society, so that they can pass on relevant information to their medical professionals.
“Anyone who may need more time to complete their application, including people with multiple sclerosis, is encouraged to request it.”