The Outreach Nursing Service in South Australia Written by: Jane Kulas CNC STN, Kaylene Neale EN, Julie Goodger CNC STN Introduction The following paper details the history and current service offered to clients 16 years and over by the Spina Bifida and Hydrocephalus Association Outreach Nursing Service in South Australia. The Service is unique, comprehensive and provides a holistic approach to client's specific needs. We aim to provide a complete assessment, management plan and evaluation of the individual clients needs by implementation of specific care when required. We appropriately refer and liaise with allied health professionals and agencies. This free service promotes independence of living skills where possible and provides a positive influence in clients lives. The Outreach Nursing Service helps bridge the many gaps that exist and hinder clients with Spina Bifida and Hydrocephalus, resulting in an enhanced quality of life. The role of the Outreach Nurse will be described and case studies will highlight some of the specific client problems, and the resultant management interventions. Statistics collated over the last four years will provide substantial evidence of the identified client needs and problems. Possible strategies for the future will be discussed. The Service strives to merge the health, social, and individual requirements of the clients. History In the 1960's intensive medical intervention for babies born with myelodysplasia demonstrated that the future would need to be 'geared' toward services to enable the management of complex problems associated with this condition. In 1976 an attempt was made to address these issues by establishing a multi-disciplinary adult Spina Bifida clinic at the Royal Adelaide Hospital. It proved difficult to coordinate and failed to adequately meet the comprehensive client needs. The rationalisation of health costs has recently seen the need for care to become more regional and community based, therefore encouraging people to access specialist health services in their local area. Transferring from the main paediatric hospital to an adult institution was particularly traumatic for the clients. Consequently many failed to make the necessary transition and lost contact with important specialised medical attention. This tragically resulted in the unnecessary deaths of some individuals. The ability of people with Spina Bifida to live independently did not always mean they would effectively seek appropriate medical or social services that would enhance their lives. It was deemed necessary to intercept and develop a service so that these clients, as they progressed into adulthood could be assisted according to their individual levels of need to access appropriate medical and community services. A long term view needed to be adopted. One with purpose, incorporating good mental and physical health aims. Pilot Study The original pilot study and publication, Myelodysplaysia in Adult Life: The Value of an Outreach Nursing Service (Goodger et al 1998) was based on the first nine months of the service. Soon after the instigation of the pilot study, it became apparent that the service would need to expand to cope with the increasing complexity of the clients needs. Originally, the Outreach position was for 20 hours per week with one part-time Registered Nurse. Partial government funding was provided initially for 12 months, however, due to the success of the service and the realisation of the extensive needs of the clients, the partial funding has continued over the past 4 years. The Outreach Nurse position has certainly expanded since inception, and now consists of 3 part-time staff, (2 Registered Nurses and one Enrolled Nurse) totalling 68 hours per week. These nurses have extensive knowledge and skills in the area of Spina Bifida and Hydrocephalus management. The severity and diversity of the clients problems have become more recognised as the service has progressed. Over the years, the Outreach Nurses have developed a greater rapport with the clients and as a result, their confidence in the nurses has increased. They are now willing to discuss very personal issues often requiring complex resolutions. The Clients We have consulted with 156 clients since the Outreach Service commenced in 1995. 153 of those clients have Spina Bifida, 2 have congenital hydrocephalus only, and one client is a paraplegic as a result of a car accident at 18 months of age. The present age range of our clients is between 16 and 49 years old. 56% of the clients are wheelchair dependant and 62% of the clients required a shunt to control hydrocephalus. The majority of clients (61%) live with other people 23% of which are with a spouse. We have 11 clients with children. Most of our clients are participating in either volunteer work (31%), open employment (26%), or studying (17%). Despite intervention from the Outreach Service and other allied health professionals, five of our clients have died from unpreventable causes since the service began. Transition to Adult Services In conjunction with the Women's and Children's Hospital, the Outreach Service assists in the transfer of clients 18 years and over to appropriate adult health services. This is achieved in the following ways: Arranging appointments Meeting the client at the appropriate hospital, showing them where to attend the appointment, and depending on the level of support required, the Outreach Nurse may attend the appointment with the client, often advocating on their behalf. Liaising with medical personnel where appropriate on behalf of the client. The requirements of each client vary, and it may be necessary to assist with, and attend future appointments to maintain the clients optimal long term health care needs. Identified Nursing Interventions The service endeavours to obtain a comprehensive history, assess the 'whole' client and plan and implement management accordingly. The provision of ongoing education, continued assessment of identified problems, and the implementation of appropriate treatment by the Outreach Service are key strategies in maintaining the optimal health care for our client group. This can be achieved by the following: Stomal Therapy Nursing stoma care wound management continence education (bladder and bowel) Promoting independence and initiating a level of client participation and responsibility for their own health issues, within their capabilities. Addressing and meeting the psychological, social and emotional needs in conjunction with the client. Encouraging clients to be aware of body image and weight gain by promoting appropriate diet and healthy living. Promoting exercise and physical activities within clients capabilities. Striving to ensure the clients are not at risk of pressure areas. This is achieved by having access to services which provide the appropriate equipment, eg. Well fitting wheelchair and cushion, walking aids. Pressure relief exercises and regular inspection of skin is also encouraged. Encouraging clients to have a G.P within their community, who is aware of their condition and specific problems. Ensuring regular appointments at specialist clinics are maintained, eg. urology, renal, neurosurgical. Offering support and advocacy to those clients attending appointments to promote an ongoing understanding by the client. Encouraging the client to liaise where appropriate with medical and allied health professionals to ensure client needs are met. Looking Towards the Future The incidence of myelodysplasia has decreased due to improved prenatal screening and the use of folate supplements. However, existing and future clients will still require the expert services offered by the Outreach Nurses for many years. In looking towards the future, the possible directions for the Outreach Service include. The Spina Bifida Association creating its own multi disciplinary team of allied professionals to work directly in conjunction with the clients to obtain a comprehensive assessment, and provide links to community services. The Outreach Service would be greatly assisted by their own doctor, physiotherapist, occupational therapist, social worker and psychologist. This would improve the service by providing greater convenience for the clients and ultimately be more cost effective. To lower the age group targeted by the Outreach Service. This would enable clients to be introduced to the service earlier leading to a greater rapport and support network. If the paediatric clients were seen by the Outreach Nurses, medical treatment could be provided in the home environment instead of utilising costly hospital services To increase the formal education offered to clients. The Outreach Service can improve the preparation of clients for the future by increasing their education on issues such as health, finances and independent living. Obviously to obtain all of the above, the present Outreach Nursing Service needs to expand. In order for this to occur, we require more funding. Currently the South Australian Spina Bifida & Hydrocephalus Association is firmly committed to their Outreach Nursing Service and is consequently self funding approximately 70% of the total cost of the service. A comprehensive review will need to be undertaken in the next two years to ensure that the service is functioning appropriately . If the service is proven to be successful, then the Association will need to lobby the government for further funding, to enable the necessary expansion of the service. Conclusion The Spina Bifida and Hydrocephalus clients needs are multi faceted and complex. The nurses require the direct knowledge and skill to provide a positive and measurable outcome for the clients. We believe that this has been achieved by the Outreach Service since its inception in 1995. Through continual progression and adaptation, the service has demonstrated the ability to resolve the complex problems it has encountered. The coordination of the Service by experienced nursing professionals is vital, as they have the specific expertise to manage these clients. It is imperative that the free Outreach Service continues to be available for clients to access. This will ensure their ongoing needs will be recognised and appropriately managed, therefore, greatly improving the health and social aspects of their lives. The Spina Bifida and Hydrocephalus Outreach Nursing Service is reaching beyond the boundaries in South Australia We urge all other Associations to follow. Other Services...