MS Nurses Speak Out About Harm Caused by The Benefits System

MS specialist nurses have spoken out about the harm they see to patients trying to claim disability benefits, such as Personal Independence Payment (PIP) and Employment and Support Allowance (ESA).

An MS Society survey of more than 100 MS nurses showed they are being put under significant pressure to help their patients with benefits claims:

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

Many people with MS ask their MS nurse for evidence to support their disability benefits applications. But MS nurses say they often struggle with providing this evidence, and it adds strain to their already overstretched workloads. The MS Society is concerned that this process is not working.

The Society says specialist healthcare professionals are not  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 to which they are rightly entitled.

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

Johnny Dela Cruz, an MS specialist nurse at Charing Cross Hospital, 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.”

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.

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.”

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

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.” 

Image: Courtesy of MS Nurses