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Psychological support for MS

What does a clinical psychologist contribute to an MS service?

Dr Julia Boot, Clinical Psychologist
Kerry Mutch, MS Specialist Nurse
Dr Mike Boggild, Consultant Neurologist

Countess of Chester Hospital NHS Foundation Trust, Liverpool Road, Chester

Way Ahead 2008;12(4):5-7

Introduction

person with their head in their hands

For people with MS the emotional aspects of living with a long-term condition can prove just as challenging as the physical aspects of the condition. In spite of this, clinical psychologists remain largely peripheral members of MS services delivered across the UK. Below, one regional MS team relates how the findings of an audit they performed reflects just how valuable the input of a clinical psychologist can be.

Emotional difficulties develop at different times following a diagnosis of MS. They often emerge in response to changing symptoms and at a point when there are many adjustments to be made. Whilst people with MS tend to manage the practical adjustments well, the emotional response to new or worsening symptoms can become overwhelming. Family and friends are often very supportive but can have limited resources when they are also upset seeing the effect of worsening MS symptoms on a person they care about. Stress itself is often associated with an exacerbation of MS symptoms, which can generate more concerns. It is often at this point that people can find some time with a clinical psychologist helpful.

Of the people with MS interviewed for the survey "Measuring Up", two thirds agreed that "the NHS does not provide enough emotional support for people with MS"[1]. There is recognition of this by the National Institute of Clinical Excellence (NICE), who recommend that clinical psychologists are integral members of specialist neurorehabilitation services[2]. However, few clinical psychologists currently provide direct input to MS services in the UK. Psychological support can be sought via mental health services but waiting lists can be long and their understanding of MS can be limited. Most people with MS who use our psychology service have some brief support to facilitate adjustment to their current circumstances and do not need mental health services.

The regional MS team that covers Chester and North Wales provides a service to around 800 people with MS. It consists of a Consultant Neurologist, MS Specialist Nurses, a physiotherapist and clinical psychologist. One session per week from a clinical psychologist was originally commissioned seven years ago. This was increased to two sessions (one day a week) nearly three years ago. People are initially referred by any member of the MS team. They can then self-refer if they would like additional sessions in the future.

The team decided to perform an audit of the service provided in order to gain a clearer picture of the different emotional problems people with MS were experiencing and the effectiveness of the support provided on a one-day per week basis. In presenting our findings here, we hope to suggest how other MS services might offer psychological support using a similar framework.

Methods

A retrospective audit of the psychological records of clients referred to the service over one year (February 2006 to January 2007) was carried out. Information was collected on the following:

  1. number of people referred;
  2. reason for referral;
  3. number of sessions provided;
  4. problems identified during assessment;
  5. interventions offered; and
  6. outcome of the intervention.

Findings

Who was referred?

Of around 800 people attending the MS service over the year, 28 were referred to the clinical psychologist. They were aged between 30 and 61 years, predominantly women (75%) and most commonly referred by MS Specialist Nurses (75%). People sought help over a wide time period following diagnosis, between 6 months and 30 years. There was an even split between those who had relapsing-remitting and secondary progressive MS.

Why were people referred?

There were 19 different reasons for referral. An average of three different reasons were stated for each person referred. People were most commonly referred for low mood, followed by difficulties adjusting to worsening MS symptoms, anxiety, memory problems, adjustment to diagnosis, difficulties managing the uncertainty about the future with MS, anger and relationship problems. Graph 1 shows the eight most common reasons for referral.

Graph 1 shows the eight most common reasons for referral; low mood, more symptoms, anxiety, memory, diagnosis, uncertainty, anger, relationships

Graph 1 - Most common reasons for referral

What problems were identified during psychological assessment?

There were 26 different problems identified in this group during assessment. An average of nine problems were reported by each person, indicating how many aspects of their lives can be affected at any one time. Low mood and anxiety were most commonly described, with a small number reporting that they were thinking about suicide. A sense of not being able to cope often contributed to feelings of helplessness and low mood.

Worsening symptoms tended to affect people's daily activities and could contribute to the realisation of having MS being more pronounced. Fears of how their future could be as MS progressed often arose for people at this point. Marital and family relationships also went through a period of change as adjustments needed to be made. People often raised fears of becoming more dependent on family and friends, as they were needing more practical help than before. About a fifth of the people referred had formal testing of their memory and thinking skills as part of a detailed neuropsychological assessment. The most common problems identified during assessment are shown in Graph 2.

Graph 2 shows the most common problems identified during assessment - low mood, anxiety, activities, coping, family, more symptoms, future, dependency, marital, memory, suicidal

Graph 2 - Most common problems described during assessment

What support was offered by the clinical psychologist?

The number of sessions offered was agreed between the clinical psychologist and the person with MS. People attended an average of three sessions, on a monthly basis. However, up to fifteen sessions were arranged, depending on individual requirements. A broad range of psychological interventions was provided. For some people, exploring options for change and being given self-help information about low mood, anxiety, falls and relationship difficulties was enough. Psychological therapy was used with people whose difficulties were more complex. Clinical psychologists learn a range of therapeutic approaches during their training. Different approaches were integrated in a way that best fit with the person and the problems they were experiencing. Partners and other family members were included at times so that they could discuss the best way of adjusting to the situation together. When problems with memory and thinking were identified, strategies to support these difficulties were developed. Some support over the telephone in conjunction with self-help information was occasionally provided for people who were unable to travel to the MS clinic.

What benefits were reported?

Though no structured outcomes measures were used, people described a range of improvements following psychological intervention including:

  • Managing their mood better
  • Coping better
  • Improved levels of daily activity
  • Better understanding of their difficulties
  • Improved relationships
  • Less prone to feelings of suicide
  • More confident about managing their future with MS.

Conclusions

This audit highlights the range and varying complexity of difficulties described by this group of people with MS, who were referred to a clinical psychologist. It shows how a number of different factors in people's lives can contribute to emotional difficulties. A flexible and individualised approach was used to provide psychological interventions that fit with the person and the problems they are experiencing at that time. The process facilitates individual management of emotional difficulties and encourages the individual to seek further support should they feel the need in future. These processes meet the government directives on managing long-term conditions, which promote self-care[3].

Because of the range and complexity of psychological problems covered during training, clinical psychologists are well placed to address the difficulties experienced by people with MS. Interventions can be offered that address mild to severe emotional problems, memory and thinking difficulties and changes to relationships. However, the overall aim is to facilitate the adjustments that frequently have to be made in response to changing MS symptoms. Other services can conceptualise the emotional problems that accompany these physical changes from a psychiatric perspective and treat accordingly with standard treatments for anxiety and depression. A psychological way of working aims to build up a picture of the many aspects that can contribute to emotional difficulties. Psychological therapy works to support people in managing these different aspects at the present time and in the future. The work sits well with the holistic approach to care offered to people with MS by a multidisciplinary team.

Out of the people attending the MS clinic for Chester and North Wales over the year, only a small proportion (4%) were referred for psychological support. Based on the 'Measuring UP' survey1, where two thirds of people with MS reported wanting more emotional support, we might expect a degree of unmet need in our service. We would like to identify the extent of the need for psychological support in this population and consider how best we could provide this within the service.

For services that do not have direct input from a clinical psychologist, support can often be gained from counsellors that are attached to GP practices. Referrals to clinical psychologists can sometimes be made via GPs or accessed via community mental health teams, when problems are more complex or present a risk to the person or others. Some geographical areas have primary care mental health teams that can offer some basic psychological support for anxiety and low mood.

We hope to have highlighted the emotional problems experienced by people with MS and how a clinical psychologist can provide psychological support as part of a regional service, within one day per week. The audit has also identified how psychological support may be accessed via other services.

References

  1. MS Society.
    Measuring up: experiences of people with MS of health services.
    London: MS Society; 2003.
  2. National Institute of Clinical Excellence.
    Multiple Sclerosis: management of multiple sclerosis in primary and secondary care.
    NICE Clinical Guideline 8. London: NICE; 2003.
  3. Department of Health.
    The National Service Framework for Long-term Conditions.
    London: DH; 2005.

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