Ana sayfa | MS’in Derinliği  | Articles | Back to Contents

MS PARTNERSHIP PROGRAMME

THE MULTIPLE SCLEROSIS PARTNERSHIP PROGRAMME

Author: Rosie Wilson

 Affiliation: Innovex UK Ltd

 

Address for correspondence:

Rosie Wilson, Innovex UK Ltd, Innovex House, Marlow Park, Marlow, Buckinghamshire SL7 1TB, UK.

Received:4 August 1997
Accepted:20 May 1998

Although scientific and clinical research has shown us that there are classic signs and symptoms of multiple sclerosis (MS),^1–4 for each person with MS, the condition is a unique experience. The unpredictable acute and chronic clinical manifestations of MS produce symptoms laden with meaning for the individual.⁵ These meanings are often coloured by where the illness has interrupted their life course and by how MS is interpreted in their society.⁶

Therefore, the need for professional health support runs on a continuum, from early presentation when diagnosis is established, to the management of an altered lifestyle when symptoms of MS begin to impose limitations. Nurses specializing in MS are now seeking to improve and individualize the clinical management of people with MS. Understanding how an individual's experiences influence and motivate them is central to MS nursing, as is the core for establishing a personalized plan of support which often extends to other family members.

Within the UK, the MS nurse has now evolved to provide a valuable resource to patients, their families and the healthcare team.⁷ A state-funded National Health Service (NHS) operates across the UK and a network of general practitioners (GPs) provides family care and refers people on for specialist treatment when necessary. General practitioners work with other health professionals including community nurses, neurologists and (where they exist) specialist nurses to offer all patients with MS a framework of support. Some neurologists employ their own MS specialist nurses; others are provided via sponsorship programmes including the Multiple Sclerosis Partnership Programme (MSPP).

The MS nurse in the UK usually works with patients in the community and in hospital-based clinics. For the patient, the service is enriched by home visits, which allow the MS nurse to make a holistic assessment of their situation. Patients have also reported that it is easier to talk to nurses in their own homes, especially in relation to difficulties with elimination and sexual dysfunction.⁶

A specialist MS nursing service helps to make neurological care more efficient because patient/ carer contact with the nurse is often direct, and avoids additional consultations. GPs have also found that using the services of an MS specialist nurse can reduce their workload and enhance their knowledge of MS.⁶ The MS nurse can act as a valuable 'fast track' link between the neurologist and the patient if a case review is necessary, which can lead to a reduction in follow-up appointment time and hasten emergency referral.

THE MS PARTNERSHIP PROGRAMME

The MS Partnership Programme was established in 1995, at a time when interferon therapy was about to become available to neurologists in the UK and the need for a widespread specialist MS nursing service across the UK was recognized. When interferon beta-1b was first licensed in the USA in 1993, it soon became clear that patients receiving treatment needed considerable professional support. The technique of self- injection needed to be taught and monitored, and patients who were considered to be unsuitable for treatment needed appropriate counselling

Although the MS nurse has a valuable role, there are considerable costs involved with every person employed, including salary, communication, information technology, transport expenses, and ongoing training. The NHS is government funded and expenditure is, therefore, strictly controlled. Consequently, very few neurological clinics have the funding available to employ MS nurse specialists. Through the introduction of MSPP sponsored nurses, NHS hospitals are being offered a specialist resource with all salary and expenses paid.

The introduction of sponsored nurses, however, has raised concerns within nursing in the UK. Some feel that sponsorship may reduce choice; there is a risk that such nurses may demonstrate bias toward the products and services of one pharmaceutical company.^8–10 Such concerns, however, are not founded with the MSPP, because the initiative is a partnership jointly developed by Schering Healthcare Ltd and Innovex UK Ltd, the latter being an internationally recognized service organization that runs a variety of specialist nursing programmes. Innovex UK Ltd is able to alleviate the element of bias because training is organized independently from the pharmaceutical sponsor and it recruits, employs, trains and manages the MS nurses through a nurse-led structure. Employment through Innovex Ltd ensures that MSPP nurses work within the code of practice stipulated by the United Kingdom Central Council (UKCC) for Nursing. Innovex UK Ltd also facilitates an objective review process for the MSPP, through a steering committee established in conjunction with the Royal College of Nursing. The committee undertakes ongoing audits, using feedback from both neurologists and patients. The MSPP also works in line with the Association of British Neurologists, and national and local branches of the MS Society.

THE ROLE OF AN MSPP NURSE

The programme now extends to 20 MS nurse specialists, three regional nurse managers, a project director and secretary and the workload and responsibilities for each MSPP nurse are adapted to suit local requirements. The region in which the author is based covers two rural English counties, and means working under the direction of five consultant neurologists and two associate specialists within the NHS, in both the primary and secondary sectors. In 2 years the author has developed a total caseload of 360 neurologist-referred patients and has had 1723 patient one-to-one or telephone contacts in that time. These figures show an interesting comparison to Kirker et al. who reported a smaller caseload of 136 patients after 2 years in post.⁶ This difference in caseloads may be due to the size of regions covered. In addition, unlike Training Nurses employed in Ireland and South Africa (described in the previous article in this issue), nurses in the MSPP are not employed solely to support people on interferon beta-1b therapy, and have a wide case-mix of patients regardless of any therapy they are on.

Working in both the community and in hospitals, a valuable link is provided, which is a key component of patient support. Cases seen range from teenagers to grandparents in their seventies, and newly-diagnosed patients to those with chronic–progressive MS. Aside from home visits, the author now works in three hospitals each week and travels 28000 business miles every year, so a car and secretarial support have become essential tools for the role.

 Assessing the nurse's value

After 1 year an audit was undertaken to assess the patients perceptions of this service. Following discussions with neurologists and Kirker,⁶ who had previously evaluated the MS nurse, an anonymous questionnaire was developed and mailed to a random sample of 50 patients in each region (total 100 patients).

The overall response rate to the questionnaire was 68%. A Likert scale was used¹¹ to measure the response to 10 quantitative questions;¹² the remaining five questions produced qualitative responses, and results are presented in Table 1.

Overall, the responses scored between 89–100% satisfaction. The scores were higher than anticipated and this could have been a reflection of the paucity of support available prior to the employment of the MSPP nurse in this region. The value placed on both home visits and the extension of support to the patients' families and friends scored particularly highly.

The reported reduction in patient visits to the GP (79–84%) was higher than that found by Kirker et al., where a quarter of patients contacted their doctors less often and GPs reported a 'reduced workload in caring for one third' of MS patients with the support of the MS nurse.⁷ This variable is interesting, but not significant due to the subjectivity of the audit.

Regarding the qualitative responses (Table 2) the most common issues raised were the value of the link provided by the MS specialist nurse, and the patient's desire for more follow-up. As a result the service was reviewed and reorganized to allow nurses more time with patients, and nurse-led clinics were introduced. There are three nurse-led clinics in different hospitals each week. These clinics are entirely managed by the nurse and are held in hospital outpatient departments, so that a neurologist is close by for advice if necessary. Clinic time is spent either assessing new patients, planning strategies of support, imparting health promotion and condition-related information on MS, counselling patients and their families, and following-up or reviewing presentations of symptoms. The nurse clinic enables a less hurried and more detailed patient interview, often lasting an hour. They enable more patient contacts within a day by reducing travelling time and have been acknowledged as increasing quality of care.¹²

CONCLUSION

People with MS who receive care and support from nurses funded through the MSPP have reported an improved level of communication. They have a greater understanding of what to expect from their condition, and they value the link that the MS nurse provides between the patient and neurologist highly.

To conclude, an example of the value an MS nurse provides can be seen in a situation recently facing the author, when a new female patient visited her clinic. Although the patient had had MS for 5 years and was fully ambulant, she relayed her experiences of a number of different, invisible symptoms such as diplopia, blurred vision when tired, fatigue and sensory symptoms. To the MS nurse this history was quite typical and suggestive of a mild prognosis. The patient's interpretation was quite different, and she was very frightened. After listening to the author's interpretation of her experiences and offers of support and information, she was visibly reassured. At the end of the interview the patient said: 'To have a person that you can talk to and build a rapport with, a professional you can chat to like a friend, that's what I needed.'

Biography

Rosie Wilson's previous positions include Sister on Surgical Neuro Intensive Care Unit at The National Hospital for Neurology and Neurosurgery, Queen Square, London, and Ward Sister and Practice Development Nurse for the Surgical Directorate, Bromley. She has been working as an MS nurse over the last 3 years.

REFERENCES

1.De Jong RN. Multiple sclerosis: history, definition and general considerations. Handbook of Clinical Neurology. Elsevier Science Publishers, New York 1970; 9: 45–62.

2. Koudriavtsa T et al. Gadolinium enhanced MRI predicts clinical and MRI disease etkinligini in relapsing­remitting multiple sclerosis. J Neurol Neurosurg Psychiatry 1997; 62: 285–287.

3.Noseworthy J. Immunosuppressive therapy in MS: pros and cons. The International MS Journal 1994; 1: 79–89.

4.Compston DAS, Kellar­Wood H, Robertson N, et al. Genes and susceptibility to multiple sclerosis. Acta Neurol Scand 1995; 161: 43–51.

5.Swain S. Multiple sclerosis: primary health care implications. Nurse Pract 1996; 21: 40.

6.Kirker SGB, Young E, Warlow CP. An evaluation of a multiple sclerosis liaison nurse. Clin Rehab 1995; 3: 219–226.

7.Benner P. Wrubel J. The Primacy of Caring. Addison­Wesley Publishing Company, California, 1989.

8. Seymour J. A sensitive topic how do nurses view the dilemmas caused by commercial sponsorship? Nurs Times 1993; 33: 48–49.

9.Black P. Stoma care. Choice cuts. Nurs Times 1996; 92 (8): 28–30.

10.North K. Sponsorship: the current dilemma. Nursing (London): the Journal of Clinical Practice, Education & Management 1990; 18: 15–19.

11.Polit D, Hungler B. Nursing Research. Principles and Methods, 4th edition. JB Lippincott Company, Philadelphia, 1991.

12. Winters S, Jackson P, Sims K, Magilvy J. A nurse­managed MS clinic:improved quality of life for persons with MS. Rehabil Nursing 1989; 14: 13–16.