MS patients being harmed by bureaucratic benefits system, say specialist nurses

MS specialist nurses have spoken out about the harm they see being done to patients trying to claim disability benefits. These include Personal Independence Payment and Employment and Support Allowance.

The nurses’ views came to light when the UK’s MS Society conducted a survey. This revealed that the nurses feel significant pressure to help their patients with benefits claims. The society says that its survey found:

·        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.

Many people with MS ask their MS nurse for evidence to support their disability benefits applications. However, those nurses have say they often struggle to provide it. What’s more, it adds strain to their already overstretched workloads. The society is concerned that the process isn’t working.

This seems to be because 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 they are entitled to receive.

System “doesn’t make sense


Genevieve Edwards (pic: MS Society).

MS Society director of external affairs Genevieve Edwards 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 is a MS specialist nurse at Charing Cross Hospital, in Fulham, south-west London. He 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, in Carshalton, Surrey, 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.”

Stress and anxiety

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.”

UK MS Specialist Nurse Association policy adviser Debbie Quinn 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.” 

RCN head of nursing practice Wendy Preston (pic: RCN).

Royal College of Nursing head of nursing practice Wendy Preston 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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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at with other companies and products. Read more.

* * * * * is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated. 


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