Rural Health Matters - Spreading the Capacity

Transcription

1 Rural Health Matters - Spreading the Capacity Shelagh Lowe 6th National Rural Health Conference Canberra, Australian Capital Territory, 4-7 March 2001

2 Rural health matters spreading the capacity Shelagh Lowe, St Marys Community Health Centre, St Marys, Tasmania INTRODUCTION Responding to community health needs is an integral element in the development and delivery of health services from the St Marys Community Health Centre. Located on the East Coast of Tasmania, in a small rural community with a population of approximately 700, but with some services reaching more then As a result of the vision shown by management and staff, an innovative treatment and self-management program for the treatment of Lymphoedema has been developed at the Centre, following community pressure and support. The Clinic, the only one in Tasmania, provides comprehensive, current and readily accessible treatment for people with lymphoedema from all over the state. About lymphoedema Lymphoedema is an accumulation of clear, watery, protein rich fluids, which have escaped from the blood system, in the spaces between the cells, resulting in a swelling of the tissues. Normally this fluid and protein is removed by a system called the lymphatic system and special cells found within the tissues, called macrophages. The macrophages clean up the proteins dead cells and other debris in the tissues, enabling this debris to be removed by the lymphatic system. This system comprises a superficial system and a deep system. In the superficial lymphatic system, the fluid is moved from the tissue spaces into the initial lymphatics largely by variations in tissue pressure, which occurs when muscles are contracted and relaxed, by changes in external pressure such as during massage, and by respiration. Once in the first part of the lymph system the fluid is then pushed into the larger collecting lymphatics, which contain muscles structures in their walls allowing them to beat rhythmically. From the superficial system, the lymph passes through progressively larger vessels to the deep lymphatic system and from there into the vascular system. The rate at which the lymphatic system operates, six beats per minute, is considerably slower then that of the cardiovascular system. In twenty-four hours the whole of the lymphatic system pumps about three litres of fluid, small volumes in comparison to the cardiovascular system, but providing an essential part of the body s fluid balance. Located at intervals along the lengths of the lymph vessels are lymph nodes, which filter the lymph fluid as it passes through, preventing bacteria and cancer cells from moving throughout the body. If the lymphatic system works efficiently, the swelling goes down. When, however, there is a problem with the lymphatic system the fluid accumulates in the tissues, creating an environment similar to a stagnant swamp, decreasing the function of the cells that are immersed in the fluid, including the macrophages. The fluid, protein and other waste accumulation worsen and the swelling increases. Lymphoedema is a superficial problem, with the deeper tissues and muscles rarely affected. The amount of fluid and protein that can be removed by the lymphatic system 1

3 is called the Lymphatic Transport Capacity. The most common cause of lymphoedema in the western world is mastectomy, with axillary clearance resulting in the removal of most of the axillary lymph nodes or glands. Some 20% of people with this form of surgery have the chance of developing lymphoedema. When combined with radiation therapy, the chance increases to 40%. (Neil Piller, Recognition, Treatment and Management of a Lymphoedema Arm, Information for Patients, undated) Other common causes of lymphoedema are pelvic cancer treatments, melanoma, and cancers involving the lymph system itself, varicose vein stripping of the lower limbs, spider and other insect bites and general trauma to the limbs. Generally, the problem of lymphoedema, if untreated, will worsen. Over a period of time the fluid is gradually replaced by fibrous tissue, making the limb feel hard and increasing the symptoms of pain, heaviness, pins and needless and loss of movement and function. Recurrent skin infections also lead to the deposition of fibrous tissue. Current treatment options for lymphoedema Lymphoedema does not develop immediately in all cases. On average there is about a three and a half year delay between surgery and/or radiation therapy and the onset of swelling. People with limbs at risk need to be given very clear instructions in this time about the care of their limb to try and prevent the lymphoedema from developing or worsening. Instructions include recommendations of what to do and what to avoid. For example: skin care wear rubber gloves for washing clothes and dishes and gardening gloves keep skin moist with moisturising cream; wear a medic alert tag engraved with caution lymphoedema arm or leg ; wear a support garment when flying and do gentle exercise; maintain your weight within reasonable limits; undertake a regular, gentle exercise program, including swimming. (Working at lymphatic system rate, not cardiovascular rate); wear clothing that does not exert pressure on the limb or adjacent trunk area; elevate the limb as often as possible, particularly if inactive; avoid sunburn; avoid injections made into the limb (unless essential); avoid blood pressure measurements made on the arm (unless essential); avoid carrying anything heavy for long periods; avoid wearing tight jewellery on the affected limb; and avoid cuts, scratches, pinpricks, insect bites, burns and strong detergents. The type of treatment will depend on the extent and duration and rate of worsening of the affected limb. The main aim of the therapy is to normalise the swollen limb as rapidly and appropriately as possible. This is done by facilitating the development of new lymphatic pathways or the reopening of old ones or by stimulating the flow of 2

4 lymph from the affected limb through any existing lymph vessels. Whatever techniques are used, the lymphatic transport capacity is increased and the swelling decreases. The patient is also given a self-management program to decrease the frequency and number of treatments required. Treatments recommended include: antibiotic therapy; hydrotherapy the external pressure of the water on the affected limb supplements the action of the muscles, whilst providing comfortable support; laser low-level laser therapy provides a photo stimulatory affect on the body. Macrophages are stimulated to work more efficiently, reducing the formation of fibrous tissue and softening old scar tissue. Lymph vessels are stimulated to grow and to pump more effectively. The effect of the laser therapy is a reduction in the swelling and preparation of the tissues for further therapy such as massage and compression bandaging. For each limb involved, treatment time under the scanning laser is normally one hour; and complex physical therapy comprises skin care and hygiene, specialised massage, exercise and compression bandaging and garments. The massage is very gentle, as lymphoedema is a superficial skin problem, and is performed at a rate to match that of the lymphatic system. It assists the lymphatic system to work better and new pathways to be opened. Each affected limb takes at least one hour to massage effectively, with extra time required for bandaging if necessary. The compression bandaging assists in further reduction in the swelling and in the reshaping of the limb. Once the limb has stabilised, compression garments are prescribed and need to be properly fitted to avoid a tourniquet effect on the limb. Slow rhythmic exercises also assist in the flow of fluid from the limb. SPREADING THE CAPACITY Innovation at the St Marys Community Health Centre Catalysing influences in the initiation and establishment of the Tasmanian Lymphoedema Centre (TLC) at the St Marys Community Health Centre during 1999 have included: the Ottawa Charter for Health Promotion (produced at the First International Conference on Health Promotion, Ottawa, Canada, November, 1986) recommendations from this Charter include good health is a major resource for social, economic and personal development and an important dimension of quality of life, health promotion action aims at reducing differences in current health status and ensuring equal opportunities and resources to enable all people to achieve their fullest health potential. People cannot achieve their fullest health potential unless they are able to take control of those things, which determine their health, 3

5 health promotion works through concrete and effective community action in setting priorities, making decisions, planning strategies and implementing them to achieve better health, at the heart of this process is the empowerment of communities, their ownership and control of their own endeavours and destinies; Healthy Horizons (A framework for improving the Health of Rural, Regional and Remote Australians ) a Principle of Healthy Horizons recommends that for communities to improve and maintain their health they require the social ability and the physical capacity to plan and implement local programs. Three of the seven goals listed in Healthy Horizons are to: undertake research and provide better information to rural, regional and remote Australians. develop flexible and co-ordinated services. achieve recognition of rural, regional and remote health as an important component of the Australian health system; a community member, with lymphoedema, concerned about the lack of comprehensive treatment and information about the condition being available in Tasmania; and other community members seeking access and participation opportunities. METHOD Jan Sparkes, a resident of the St Mary s community, with lymphoedema, frustrated by lack of access to effective treatment for the condition in Tasmania, heard about the lymphoedema clinic based at the Flinders Medical Centre in Adelaide, whilst doing research into her condition. The lymphoedema management team had been achieving good results with treatment and self-management techniques to reduce the size of the affected limb. Her lymphoedema leg, despite wearing compression stockings, was continuing to increase in size and making her normal activities of daily living increasingly difficult. She and her husband travelled to South Australia for treatment from the team Associate Professor Neil Piller, (Lymphologist), Ann Thelander and Robyn Heddle, (physiotherapists), using low-level laser and complex physical therapy. Jan, impressed by the results of the treatment, invited the team to come to St Marys to conduct a workshop for other lymphoedema suffers and health professionals interested in treating the condition. RESULTS April 1999 in spite of scepticism from metropolitan-based people concerned that patients and professionals would not travel to an isolated rural centre, a workshop was conducted with 70 patients and carers and 22 health professionals in attendance. Attitudes ranged from Health Professionals will not travel to a small 4

6 rural community to receive professional development and This sort of workshop needs to be conducted where there is a population base. The workshop was conducted over two days at the St Marys Community Health Centre, with the support of the staff in providing the facilities and assistance with organisation and the local community providing the catering and other forms of hospitality. Associate Professor Neil Piller presented education and information about lymphoedema, in the course of a half-day workshop for patients and their carers. Ann Thelander and Robyn Heddle, physiotherapists, then discussed how lymphoedema could be treated and managed, using the low-level scanning laser and complex physical therapy and a simple home self-management program. This was then expanded over the following one and a half days to the health professionals in attendance. The two physiotherapists followed up the workshop for the next ten days, staying in St Marys to provide clinical treatment to interested patients and further training for interested health professionals. For many of the patients who had treatment sessions with Ann and Robyn, this was their first experience of treatment by the low level, scanning laser. Some had previously experienced no form of treatment other then the provision of support garments, others had previously, and currently continue to have, complex physical massage therapy and bandaging but had not tried laser. For some patients, this was their first experience of learning about lymphoedema and that anything could be done to assist in its management. For the community, there was an influx of visitors who used the available local accommodation, some overnight but many for the week or more. When they were not receiving treatment at the Community Health Centre, they were making use of local restaurants and other facilities and visiting the local tourist attractions. The economic boost to the local community was noticeable and commented on by many of the local business owners. There was generalised agreement, by both patients and members of the community that the treatment program should be readily available and that a Lymphoedema treatment centre should be set up in St Marys. The State Government was unable to provide the funding to purchase the equipment and pay the staff required for such a clinic to be effective. It would have to be privately owned and operated. Fundraising for the low level, scanning laser commenced in July 1999 with a morning tea being held in Scamander, a community 15 minutes drive from St Marys. This first effort raised $2777. A nearby, St Helens community resident made a donation of $10 000, with a request that the State Government matches the donation, dollar for dollar. The Government response was that, if such a machine was to be purchased, using government funds and then it would have to be located in a larger population centre, such as Launceston or Hobart. Undaunted, the Fundraising committee continues and over the next four months, $ was raised. The low level, scanning laser machine was ordered from Italy and arrived in St Marys in November The publicity surrounding the workshop and the subsequent fundraising effort has significantly increased the awareness of lymphoedema within Tasmania. A review, funded by the State Government, has been conducted as to the availability and types of treatment, and the costs involved. There are differences throughout the state as to the availability and access to treatment with few therapists being fully trained in the 5

7 treatment processes to allow ready access when required by the patient. The State Government, whilst supporting the idea of a specialist treatment centre, has been unable to provide any financial support in the way of subsidised treatment or use of the patient transfer scheme to assist patients to access the treatment. The reason often given, other then budgetary constraints, is that the Centre is located in a rural area. They have, however, come to a lease arrangement to accommodate the Tasmanian Lymphoedema Centre within the St Marys Community Health Centre. Issues arose surrounding the need to licence the laser machine, by the Tasmanian Radiation Board the only state in Australia that requires this of a piece of physiotherapy equipment. Training sessions that had been set up for staff interested in working in the Centre where delayed from November 1999 to January 2000, due to licensing issues. An issue has also arisen concerning Private Health Insurance rebates for treatments provided by the Tasmanian Lymphoedema Centre. The clinic is currently staffed by Kate Williams, a radiation therapist, who operates the scanning laser and Marjorie Kanagoratnam, a masseur, who has undertaken the necessary specialist lymphoedema massage training course. There are two physiotherapists also associated with the clinic who do not undertake regular treatment sessions. Rebates are only available for physiotherapy treatment and neither of the regular staff members currently have a provider number, as they are not physiotherapists. This increases the costs for patients accessing the treatment. A submission has been made to the Health Insurance Commission and the situation will be reviewed, hopefully positively, in March The Tasmanian Lymphoedema Centre officially opened on the 28 th February 2000 by Senator Jocelyn Newman. At that stage there were 120 registered clients from throughout the state of Tasmania interested in accessing the treatment. This figure is now 160 and continues to grow. The Country Women s Association gives significant encouragement to the development of the Lymphoedema Clinic and is working to raise the awareness of the condition by the publication of a pamphlet with information about lymphoedema. They are fundraising to assist clients to travel to the Clinic to access the treatment. NOW AND INTO THE FUTURE Employment. Five health professionals received comprehensive training in the techniques required to treat lymphoedema. Training occurred in both Adelaide and from the Flinders Medical Centre Lymphoedema Team members who conduced training sessions in St Marys. The Tasmanian Lymphoedema Centre operates four days a week. Employment is also available for a Co-ordinator who answers enquiries and makes bookings for accommodation. A couple from Victoria purchased property in St Marys after touring the state and hearing about the TLC and seeing enthusiasm for the local community its members have. They have turned the house into a four-star bed and breakfast establishment, offering special accommodation deals for patients accessing services at the TLC. 6

8 Publicity surrounding the fundraising, purchase and installation of the scanning laser machine, one of nine currently in Australia, the creation of the TLC, the training of health professionals to staff the Centre and its ongoing functioning, and the continuing support of the CWA, has significantly raised the profile of lymphoedema. Interest by medical practitioners and specialists in the treatment process and future research. The Tasmanian University Department of Rural Health is offering in undertaking research. Research, to be implemented over the next twelve months, will be done in association with that already being undertaken by Associate Professor Neil Piller and the team at Flinders Medical Centre. The potential to assist other centres with training and setting up of their own treatment units. The Tasmanian Lymphoedema Centre could be used, in the future, as a model by other communities who wish to implement a health service generally associated with larger population centres (lymphoedema or other health condition). ACKNOWLEDGMENTS With sincere thanks for the assistance and ongoing support of the following: Jan Sparkes, St Marys community member; Associate Professor Neil Piller Lymphologist; Ann Thelander, MAPA; Robyn Heddle, MAPA; Judith Reeman, Life Member of the Australian Physiotherapy Association; Patricia Burgess, Manager, St Marys Community Health Centre; Associate Professor Judith Walker, Director, Tasmanian University Department of Rural Health. REFERENCES Piller, Neil. Recognition, Treatment and Management of a Lymphoedema Arm Information for Patients, undated. Piller, Neil. Recognition, Treatment and Management of a Lymphoedema Leg Information for Patients, undated. Casely-Smith, Judith and J.R. Modern Treatment for Lymphoedema, 1997 Healthy Horizons (A framework for improving the Health of Rural, Regional and Remote Australians ). The Ottawa Charter for Health Promotion. Produced at the First International Conference on Health Promotion, Ottawa, Canada, November, 1986.) 7

9 AUTHOR Shelagh Lowe has worked as the physiotherapist at the St Marys Community Health Centre and St Helens District Hospital for the last six years. She is the sole physiotherapist working in this area of the east coast of Tasmania, servicing a scattered rural population of After completing her high school education in Mareeba, Queensland, and Narrabri, NSW, Shelagh gained her physiotherapy qualifications from the University of NSW and Cumberland College of Health Sciences in Sydney, graduating in After two years working in Sydney, Shelagh moved to Launceston, Tasmania, and now lives in the Fingal Valley with her husband and three boys. She has a passionate interest in rural health and is Tasmanian representative on both the National Rural Issues Committee of the Australian Physiotherapy Association (APA) and Services for Rural and Remote Allied Health (SARRAH), convenor of the Australian Rural and Remote Australian Allied Health Taskforce (ARRAHT) of the Health Professions Council of Australia and a councillor on the National Rural Health Alliance. 8