MS nurses speak out about harm being caused by the benefits system

Published date: 26 Mar 2018 at 1:00AM

Karen who lives with MS, at an appointment with her MS nurse, Julie

MS specialist nurses tell us about the harm they see to patients trying to claim disability benefits, like Personal Independence Payment and Employment and Support Allowance.

Our survey of more than 100 MS nurses shows they're being put under significant pressure to help their patients with benefits claims:

  • 90% of nurses said they provided supporting evidence for benefits applications
  • Of those, 58% said they worked outside of working hours to provide this evidence
  • 75% said providing evidence increased their workload either a moderate amount or a lot
  • 83% of everyone who answered said their patients asked for help with filling in benefits applications.

A symptom of a welfare system that doesn’t make sense

We know many people with MS ask their MS nurse for evidence to support their disability benefits applications. But MS nurses have told us they often struggle with providing this evidence, and it adds strain to their already overstretched workloads. 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.

Having MS is hard enough

Genevieve Edwards, our 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. Having MS is hard enough. It shouldn’t be made harder by a welfare system that doesn’t make sense.”

Under pressure

Johnny Dela Cruz is a MS specialist nurse at Charing Cross Hospital. He told us: “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.”

Helen Davies, a MS specialist nurse at St Helier Hospital says: “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.”

No guidance

Joanna Smith, a MS 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 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 make MS symptoms like fatigue and pain worse.”

Bad for patients and nurses

Debbie Quinn, Policy Advisor at the UK MS Specialist Nurse Association says: “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.” 

Beaurocratic and cumbersome system helps no one

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.

"Ministers and policymakers cannot ignore the experts who say it is leading to people missing out when they need help most. The system must be fit for purpose and clear guidance, education and time must be given to those who can support applications.” 

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Page last updated: 27 Mar 2018

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