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Promoting patient-centred care

The development of a communication tool for people with MS

Caroline Pollington, MS Specialist Nurse
Sarah White, MS Specialist Nurse
St George's Hospital, Tooting, London

Way Ahead 2009;13(3):8

Introduction

Quality requirement 11 of the National Service Framework for long-term conditions1 states that 'people with long-term neurological conditions are to have their specific neurological needs met whilst receiving care for other reasons in any health or social care setting'. In spite of this recommendation, the experiences of some people with MS who had been admitted for inpatient stays at their local district general hospital revealed that their specific care needs were not recognised by the hospital staff. The MS specialist nurse team based at St George's sought to address this problem through the development of a communication tool for people with MS.

A number of patients had relayed accounts of their experiences of inpatient stays in their general district hospitals to the MS specialist nurses based at St George's Hospital. Further probing revealed that the nurses providing their care, as well as the therapists and wider medical team, did not understand the variability of MS symptoms and the potential for daily fluctuation in the individual's abilities.

In 2007-2008 there were a total of 207 admissions for people with MS for non-neurological problems across two general hospitals, suggesting that there were probably many other people with MS living in the local area that would have had similar experiences. The MS nursing team sought to find a way to improve awareness of the fluctuating nature of MS and how specific symptoms affect the individual. The ultimate aim was to improve the patient's experience in hospital, and by facilitating healthcare staffs' understanding, improve the quality and flexibility of care that patients receive.


Development

The MS nursing team decided to create a generic communication tool for people with MS that could be used to inform healthcare staff about their individual neurological needs. Research was conducted into currently available tools, but of the two that were identified it was felt that neither addressed the specific symptoms of MS and patients' level of independence. As patients had reported specific difficulty with fatigue, accessing the toilet and help at mealtimes, it was clear the communication tool should include activities of daily living. It also needed to reflect the variable effect of MS symptoms on the person so responses were determined as 'yes/sometimes/no'. In order to individualise the tool, there was space for personal comments and sections on demographics, equipment used, medications and considerations for discharge.

Guidance for both the individual and healthcare professionals using the tool was included.


Contents of the communication tool

  • Guidance for patients and healthcare professionals
  • Personal details including contact details for healthcare professionals involved
  • Communication
  • Nutrition
  • Personal hygiene
  • Toileting
  • Sensory symptoms
  • Mobility
  • Environmental considerations
  • Other symptoms affecting function
  • Medications
  • Equipment used
  • Discharge arrangements

The document was reviewed by an MS physiotherapist and neuro-occupational therapist to ensure accuracy and completeness and their suggestions were incorporated. A patient focus group was then arranged to ensure people with MS felt the document was relevant, inclusive and easy to use and understand. The document was subsequently reviewed by the St George's Hospital Patient Information Group.


Distribution

Once printed it was sent out to patients on the MS nurses' caseload that were moderately to severely impaired due to their MS, between September and October 2008. A local MS group also sent out copies of the tool to its members. Over 300 copies were distributed in total.


Evaluation

An evaluation form was sent out with all copies distributed, to be returned once the document had been used. To date, five have been returned and feedback so far is very positive. Due to the nature of MS, it is anticipated that some people will not have an opportunity to use the document for some time. Feedback from the healthcare professionals who have seen this tool would also be useful.


Conclusion

A communication tool for people with multiple sclerosis has been developed to facilitate patients' communication of their unique neurological needs and thereby increase health professionals' understanding of their condition. Although the tool has yet to be formally evaluated, it is anticipated it will improve the patient's experience in hospital.


References

  1. Department of Health.
    The National Service Framework for long-term conditions.
    London: DH; 2005.

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