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Multiple sclerosis patients face challenges accessing benefits, say specialist nurses

A survey of multiple sclerosis (MS) nurses reveals they believe harm is coming to patients because of the disability benefit assessment process

Multiple sclerosis patients are facing challenges when trying to access the benefits system which is adversely affecting their health, say specialist nurses.

A survey of multiple sclerosis (MS) nurses reveals they believe harm is coming to patients because of the disability benefit assessment process.

Payments such as Personal Independence Payments and the Employment and Support Allowance are often vital to MS patients and in a survey of more than 100 nurses 90% said they had provided supporting evidence for applications and of those, 58% worked outside of working hours to do so.

‘Our survey shows helping with benefits is a significant issue for MS nurses, who also see first-hand how damaging the assessment process is,’ said Genevieve Edwards, director of external affairs for the MS Society.

Ms Edwards went on to say that they are urging the government to improve the process, as the current welfare system ‘doesn’t make sense’, to allow nurses to concentrate on patient care.

‘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,’ said Helen Davies, an MS specialist nurse at St Helier Hospital.

‘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.’

The survey also showed that 75% of respondents agreed that providing evidence increased their workload and 83% said patients had asked for help with applications.

The MS Society says that specialist nurses are not equipped or given the proper guidance on how to produce evidence, leading to many patients being denied benefits.

‘We’re not given any guidance about what to put in these letters, and it’s not a simple process,’ said MS specialist nurse in south west London, Joanna Smith.

‘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.’

Johnny Dela Cruz, a MS specialist nurse at Charing Cross Hospital, said that he sees the effects of patients without benefits, including one instance where a patient stopped treatment because of benefit cuts as he could no longer afford to get to 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,’ he added.

The Royal College of Nursing (RCN) has also spoken out about the need to protect specialist nurses, such as MS nurses, whose unique skills make their time ‘extra precious’.

‘Ministers and policymakers cannot ignore the experts who say it is leading to people missing out when they need help most,’ said Wendy Preston, head of nursing practice at the RCN.

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