Survey: MS nurses speak out about harm benefits system is causing patients
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A survey of more than 100 MS nurses by the MS Society reveals the significant pressure being placed on them to assist with benefits claims.

Nine in ten (90%) said they provided patients with evidence for benefits applications. Of those, more than half (58%) said they worked outside of working hours to provide this evidence and three quarters (75%) said providing this paperwork increased their workload either a moderate amount or a lot.

The survey also shows that expectations on MS nurses go beyond providing evidence, as the majority of all respondents (83%) said their patients also asked for help with filling in benefits 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 current supporting evidence explaining the impact of their condition. People with MS have told the MS Society that they would normally ask their MS nurse for this.

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.

“Our survey shows helping with benefits is a significant issue for MS nurses, who are also seeing 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.”

What MS nurses have said:

  • Johnny Dela Cruz, MS specialist nurse at Charing Cross Hospital, London: “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, MS specialist nurse at St Helier Hospital, south west London: “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, MS specialist nurse in south west London: “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 Advisor at the UK MS Specialist Nurse Association: “MS nurses are under immense pressure to provide not only clinical care, but also the ongoing support people need for managing their MS. We want to be delivering the best possible care for our patients, but our ability to do this is being impacted by the paperwork we’re being asked to do for benefits claims. 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.”

Additionally, 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. The system must be fit for purpose and clear guidance, education and time must be given to those who can support applications.”

MS affects more than 100,000 people in the UK. It’s unpredictable and can cause problems with how people walk, move, see think and feel.  An MS specialist nurse’s role typically involves providing people with information and support on how to best manage their condition, initiating and monitoring treatment for people with relapsing forms of MS, providing psychological support, and co-ordinating care. There are around 250 MS nurses in the UK, but there is research to show this isn’t enough to meet the needs of everyone with MS, and that patient caseloads are unsustainable in many areas.

Through its MS: Enough campaign, the MS Society is urging the Government to make sure people with MS can rely on financial support when they need it, without the constant fear of having it taken away. Amongst its calls to improve the disability benefits system, the charity wants to see the Department for Work and Pensions work more closely with health care professionals to improve the way evidence is collected. This includes:

  • Engaging with specialist healthcare professionals to educate them about their role in the assessment process;
  • Providing clear guidelines in correspondence on what constitutes ‘good evidence’;
  • Allowing more time for people to collect evidence.

The MS Society surveyed 104 MS specialist nurses through the UK Multiple Sclerosis Specialist Nurse Association between October and November 2017.

Picture (c) MS Society.