Living with MS handbook_final

M u l t i p l e S c l e r o S i S S o c i e t y o f t a S M a n i a

Living with MSa guide to our programs and services

2 MS Society of taSMania www.msaustralia.org.au/tas

MS Helpline 1800 676 7219am to 4pm Mon–fri

the Multiple Sclerosis

Society of tasmania is

committed to enhancing

the quality of life for

people in tasmania with

MS and to reducing

the impact upon their

families and carers.

this publication has been produced with the kind support of the Myer community fund.

3www.msaustralia.org.au/tas

ContentsMS Society of tasmania 4

client Services 5

your client Services team 7

clinical Services 7

immunotherapy Support Program 8

Specialist outpatient clinic 8

counselling Services 9

information Services 10

education Services 10

case Management Services 11

MS Group Programs 13

Self-Management 15

MS Research in tasmania 18

your Rights and Responsibilities 19

4 MS Society of taSMania

MS Society of Tasmaniathe MS Society of tasmania is a not for profit organisation committed to assisting tasmanians affected by Multiple Sclerosis (MS).

MS is the most common neurological condition affecting young people in tasmania. in fact, this state has the highest prevalence of the disease in australia. Some six hundred tasmanians have a diagnosis of MS and many more people such as family members and carers are affected by the disease every day.

the Society has a proud history of caring for tasmanians with MS for nearly 50 years. the organisation is governed by a Board of Directors and has three staff teams working hard to make the Society strong and sustainable now and into the future.

These teams are:• client Services• Marketing & Development• corporate Services

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Client Services

> clinical Services

> immunotherapy Support program

> MS Specialist outpatient clinic

> counselling Services

> information Services

> education Services

> case Management Services


Client Servicesthe MS Society of tasmania offers free and confidential services to people affected by Multiple Sclerosis.

individuals living with a diagnosis of MS may choose to become registered clients of the Society. Registration offers access to all services of the MS Society and regular newsletters and research updates. clients also receive our MS Society calendar of events outlining activities across the state throughout the year.

We are committed to meeting the needs of our clients and rely on them to tell us what they need and expect from our service – working together in partnership.


our client Services team are skilled and qualified health care professionals and case managers who work from offices in Sandy Bay and Kings Meadows.

client Services staff are available to meet with clients/carers/family members, GPs even their employers or teachers – in our offices, in clients’ homes, community centres or even in a local coffee shop if that is convenient.

our services aim to be as flexible and client centred as practicable.

our team are also well regarded and active in the broader health care network and have an important role in connecting our clients with health care providers and service organisations in their own communities. We then support those services by offering training, information and guidance on all topics and aspects associated with MS.

the following pages outline the services offered by our client Services team.

Clinical Servicesthe Society employs a team of qualified and experienced nurses whose role is to assist people living with MS and their families/carers with the more clinical aspects associated with living with multiple sclerosis.

our nurses are skilled in assisting clients in the areas of:

• clinical issues associated with MS;

• explanation of diagnosis techniques;

• MS symptom management;

• Referral to allied health services in your community;

• Liaison with neurologists and GPs; and

• accessing specialist clinical information.

Your MS Client Services Team


> Immunotherapy Support Program

our MS nurses offer comprehensive support for people on MS therapies.

this program provides:

• information on and explanation of all available therapies;

• education and training on self injection techniques;

• Side effect and site reaction management;

• follow up and support in regard to ongoing treatment;

• Provision of immunotherapy equipment; and

• advice on travelling with therapies and equipment.

For more details, please ask for a copy of our Immunotherapy Support leaflet.

> Specialist Outpatient Clinic

MS Society nurses attend the specialist MS clinic that is part of the RHH outpatients clinics. the clinic operates weekly with consultant neurologists and access to allied health staff.

the MS nurses can assist in scheduling appointments, the provision of information regarding therapies and interventions and co-ordinating your care through the clinic.

For a copy of the MS Clinic leaflet, please ask a member of the team.


Living with Multiple Sclerosis can be difficult for the person living with MS, family, friends and carers. there may be feelings of confusion, frustration even anxiety about the future. this is a natural part of living with MS but people affected don’t have to face it alone.

an MS counsellor can talk about important life issues such as:• relationship and family issues;• changing roles and

responsibilities;• depression;• anxiety;• loss and grief;• sexuality and intimacy;• parenting with MS;• information and advice on

community resources;• employment; and• referrals to other services

if required.

counselling can happen in a way that best suits the individual:• face to face – wherever feels

most comfortable;• phone or email; and• group sessions.

Support Groups can be a very effective way to share problems and solutions – discussing them in a supportive environment with others who are facing the same issues can be a very empowering experience.

Client privacy is very important to us. We adhere to all privacy and confidentiality laws and you can be assured of our utmost discretion at all times.

Counselling Services


Information Servicesinformation is a key element in understanding and empowerment – it is a critical part of making decisions and taking control with confidence in uncertain and changing times.

the MS Society client Services team can provide information about all aspects of living with MS that is tailored to your needs. We source information from current and credible sources from around the world.

each office of the MS Society holds articles and information on most topics related to MS, including DVDs and videos on a range of topics.

clients and others may borrow or request copies of information that we hold or staff will apply to other MS libraries for information that is not immediately on hand.

Education ServicesMS staff also conduct tailored educational sessions relating to any aspect of multiple sclerosis. these sessions may be developed to meet the needs of clients, families, service providers, nurses, carers, employers or members of the community...anyone who is interested in MS.

our staff will research and structure the session to meet the needs of the group and prepare handouts to support the information.

Sometimes our staff will deliver a presentation specific to one aspect of the disease – as MS can be quite complex. We may also invite specialist practitioners to present with us.

We are always very happy to travel to any area and present, so if you know of a group who may be interested or if you think that you know of a group that could know more about MS, please let a member of the client Services team know.


Case Management Servicesthe MS Society of tasmania offers comprehensive case management services.

these services become relevant and helpful when a client is experiencing changes in their condition or if they are developing disability associated with their MS and require external support to meet their daily needs.

case management involves MS staff working with the client and possibly their family/carer, their neurologist/GP and other service providers to develop and facilitate a plan of care tailored to meet their individual needs, choices and circumstances.

the plan of care may include assistance with home help services, personal care, community nursing and in some cases, outreach occupational therapists and physiotherapists assessing clients in their homes or workplace.

case management may also involve our staff developing applications for funding for ongoing packages of care

and/or equipment and medical consumables.

MS staff can provide tailored documentation that is detailed and specific about the impact of MS on an individual or family’s daily life. this documentation can assist with centreLink, superannuation companies, employment and other associated organisations.


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case management is not about our staff taking over control of a client’s life or making all of the decisions just because they have MS.

it is specifically aimed at assisting the person to identify goals and strengths. it is flexible, active and responsive to changes in a person’s condition, ensuring that changing needs are recognised.

If you would like more information on Case Management, just ask a member of the statewide Client Services team.

13

MS Group Programs


Group Programs can be of great value for individuals with multiple sclerosis, their families, friends and support networks.

they provide an opportunity to meet with others who are in the same situation, to share experiences and ideas, learn new information, receive support and to see how others cope.

Group programs exist in many shapes and forms. they may have specific focus by addressing a particular topic or audience, or can be a general get together for a coffee and a chat.

they can also be more structured and focused towards meeting identified therapeutic goals and can even occur over the internet or by email.

the MS Society of tasmania has a range of flexible group activities.

Support Groups are organised and facilitated by staff of the Society. these may be organised around a particular topic or designed for people with similar issues and needs.

Self Help Groups are organised and facilitated by group members, supported by the MS Society.

there are existing groups that meet around tasmania – these groups have a calendar of meetings for each year.

if you would like to attend a group and one is not active in your area, we are very happy to contact others in the area with a view to starting a group.

If you would like more detailed information on the MS Society of Tasmania’s group programs or a calendar of group events, please call us to request a leaflet or speak to a member of the Client Services Team.

MS Group Programs


Self-Management


the goal of self-management is to find a way to live the healthiest life possible. it means finding ways to reduce or overcome physical and emotional challenges that may present in your life as a result of living with a chronic condition.

Some lifestyle changes and self-management activities that assist in living well with MS may include: • Managing your overall health

and wellness; • adapting your everyday

activities and roles; and• Dealing with emotions, fears

and frustrations that arise from a diagnosis of MS and also living with MS over time.

Being able to successfully self-manage MS in partnership with your support network and health care providers can assist in minimising the severity and impact of your symptoms and to improve your overall quality of life.

the MS Society client Services team provides self-management support through case management, clinical support, counselling and education. We encourage and support individuals to understand their central role in managing their MS, to make informed decisions about their care if required, and to participate in a range of healthy lifestyle options and choices.

Self-management support involves the individual with MS working together with family, carers, the client Services team and other health professionals. through this process, information is shared, health goals are identified, and a plan is agreed upon that everyone can use to guide support at work, home and in the clinical setting. in fact, in all aspects of life.

Self-management has valuable application and can help you live your life with confidence and can assist you to build skills and confidence, increase your knowledge about MS, and assist health care providers to understand and support the needs and preferences of the person with MS.

Self-Management


Some self-management tips:• Learn as much as possible about how MS may affect your life;• communicate your needs and how you are feeling with your support

network and health professionals;• find out about services and other support groups in your area;• find out more from your doctor and/or physiotherapist what

exercises/activities you can be involved in;• Maintain a healthy diet, eating from the five food groups everyday;• Work out effective ways to manage your symptoms or stressors in

your life – this may be with relaxation techniques, gentle exercise, hobbies, pets etc; and

• Remember to live, laugh, love and have fun!

If you would like more information on MS self-management or if you would like to attend a group focusing on developing strategies for living with a chronic condition, please contact your local MS Society office.


MS Research in Tasmaniaat the MS Society of tasmania we recognise that research is critical to learning more about the disease and it will be the key to finding a cure and treatment opportunities.

the Society recognises that it has a responsibility to be actively involved in research projects for the benefit of our current clients and for people who will be diagnosed with MS in tasmania in the future.

the tasmanian MS Society actively contributes to MS research in a number of ways.

this includes financial contributions to MS Research australia, the facilitation of MS clients’ involvement in local and national research projects and through direct support of research projects here in tasmania and nationally.

We have a strong partnership with the Menzies Research institute in tasmania that is aimed at enhancing MS research within that widely regarded research facility.

from time to time, tasmanians with MS are invited to participate in important and innovative research projects. experience has shown that people with MS in tasmania are equally eager to take part in research projects.

through the MS Society client network, our newsletter and mailing list, we provide a key for MS researchers wishing to attract prospective research candidates and to give clients feedback on what is happening in the world of MS research.

MS Research has an international focus and new advances in our understanding of this challenging disease are happening every day.

We will let you know of any research opportunities, and of course those important breakthroughs, as they happen.

Thank you for your support.


You have a right to:• Be informed about the

services available and any changes to our services.

• Receive services based on your assessed individual needs/choices and as agreed to by you.

• Be informed about the type of information the Society holds about you, why and how it may be used. the Society will uphold confidentiality and Privacy laws at all times.

• Receive courteous, non-discriminatory, punctual, respectful and reliable service/s.

• Be informed on any costs that may be incurred by using the service.

• Make a complaint and receive feedback in a timely manner.

• Use an advocate to assist in communicating with us.

You have a responsibility to:• Keep appointments that you

make with us or inform us if you are unable to attend.

• Be responsible for the decisions that you make while we are assisting you.

• treat our staff with courtesy and respect.

• conduct yourself in an appropriate way – that is mindful of the wellbeing, rights or safety of others.

• Let us know if you are not satisfied with our service.

MS Clients’ Rights and Responsibilities


Head Office15 Princes StreetSandy Bay taS 7005tel: 03 6220 1111

Northern Regional Office18/2 innocent StreetKings Meadows taS 7250tel: 03 6343 1240

FreecallSouth: 1800 676 721north: 1800 654 872

www.msaustralia.org.au/tas

issue

1: J

une

2009

Living with MS handbook_final

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