Nurses need more support to help them address the mental health challenges of people with multiple sclerosis (MS) and other neurological conditions, according to a report from a group of leading MS charities.
They are calling on the government to implement a set of policies that would ensure people with MS have much needed access to mental health support.
The results of a survey carried out by charity the MS Trust published in the report ‘Life changing: mental health and MS’ in January this year, showed that there is a large unmet need for mental health care among people with MS.
The survey included 2,068 people with MS who live in the UK. Over half of the respondents reported that MS had impacted their mental health moderately or severely while 17% were troubled by thoughts of suicide.
However, less than 9% of the survey respondents had spoken about their mental health with a member of their MS team. And 38% said they would like more support to manage or improve their mood or emotions.
Mavis Ayer
MS lead nurse at University Hospital Southampton NHS Foundation Trust and co-chair of the UK Multiple Sclerosis Specialist Nurse Association, Mavis Ayer, told Nursing Times that the lack of mental health support for people with MS or other neurological conditions can be a significant barrier to their overall wellbeing and quality of life.
“Individuals with MS often face various physical symptoms, but less focus is given to mental health symptoms,” she said.
“As an MS nurse or healthcare professional, addressing mental health is a crucial aspect of patient care.
“The emotional and psychological impact of living with a chronic condition like MS should not be underestimated.”
She said that a lack of mental health support can lead to a cascade of negative effects, including worsening physical symptoms, reduced likelihood of adhering to treatment plans and a lower quality of life.
MS patients without mental health support were also more likely to become withdrawn and isolated, and can lose their ability to cope with the challenges posed by their condition, she said.
Ms Ayer added: “It’s essential for healthcare professionals like MS nurses to consider the holistic needs of their patients.
“Incorporating mental health assessments and interventions into patient care can have positive effects on their overall wellbeing.
“Collaborating with mental health professionals, providing resources for counselling or therapy, and educating patients about the importance of addressing mental health are all crucial steps in providing comprehensive care for people with neurological conditions like MS.”
On 11 July, representatives of six leading MS charities presented the minister for disabled people, health and work Tom Pursglove with a set of recommendations on how to improve the mental health of people with MS and other neurological conditions.
The report – Mental health and MS: Joint policy position – recommended developing and implementing a neurological-conditions talking therapies pathway and a training package for the neurological workforce on mental health awareness.
“The problem is that the caseloads are increasing and demand is much higher”
Paru Naik
It said that MS annual reviews should be consider mental health alongside cognitive difficulties and that information on support for carers should be given to people with MS and those who care for them.
The report also recommended improving access to neurologists, MS nurses and mental health practitioners and said that the number of neurologists and MS nurses needed to be increased.
Surveys carried out by the MS Trust in 2021 found a shortage of specialist MS nurses across the UK.
In 2021 there were 298 full-time equivalent MS specialist nurses where 447 were needed to provide care to the 140,000 people living with MS in the UK. This meant that MS nurses were working with a caseload 50% higher than recommended.
Ms Ayer agreed that boosting the numbers of MS nurses would be helpful in addressing the mental health needs of MS patients, but that it would not on its own be enough.
“Boosting the numbers of MS nurses can have a positive impact on improving mental health support for patients with MS, but it’s just one piece of a larger puzzle,” she said.
“While increasing the number of MS nurses can potentially lead to more comprehensive and specialised care, it’s equally important to consider other factors that contribute to effective mental health support within the context of MS care.”
Other important factors included investment in training for MS nurses, interdisciplinary collaboration, access to resources such as counselling services and mental health screening tools and appropriate patient load.
“Even with more MS nurses, their effectiveness can be compromised if they are overloaded with patients and don’t have sufficient time to address mental health issues. Appropriate patient load management is essential,” Ms Ayer said.
Paru Naik
Director of health professional programmes at the MS Trust, Paru Naik, agreed that heavy caseloads were getting in the way of MS nurses being able to provide needed mental health support to people with MS.
“If you have a specialist nurse who’s carrying a caseload of no more than 315 – that would be an ideal, then they would have enough time to think about diagnosis, counselling and supporting MS patients through their pathway,” she said.
“The problem is that the caseloads are increasing and demand is much higher.”
She said that this problem was exacerbated by a lack of training capacity for new MS nurses and by the fact that nearly one in three MS nurses who were surveyed in 2021 said that they would be retiring by 2026.
In addition, many MS nurses were looking to move into less complex roles.
“When you take into account those three factors, the sum of those parts is a real big problem,” she said.
The ‘Mental Health and MS: Joint policy’ recommendations for change were drawn up jointly by the charities the MS Society, the MS Trust, Overcoming MS, Shift.ms, MS-UK, and Neuro Therapy Network.
After being presented with the report, the minister for disabled people, health and work agreed to speak with relevant teams in the Department for Health and Social Care about the recommendations.
