Thank you!

We are now nearing the end of our project and we would like to thank everyone who has been involved. It is the input, assistance and encouragement of these people who have make this project possible.

MS Society Members – Thank you for contributing your time. We are extremely appreciative of your ideas, enthusiasm and support. It is your contributions and honest feedback that has shaped the direction of the recommendations.

Staff at the MS Society of SA & NT - Thank you for your participation and support of the project and sharing your experiences and knowledge.

Reference Group Members - Sharon Barlow, Michelle Barmby, Nigel Cooper, Kaveeta Deut, Meredith Jolly, James McLoughlin, Libby Morris, Margot Strelan, Claire Zalipka. For your time, valued contributions and enthusiasm.

Ian Wilson – logo and business card designer. Ian is a client of the MS Society of SA & NT. Thank you for donating your time and creative ideas to develop the logo for our project.

Deborah Harvey – (University tutor) Thankyou for your ongoing support and guidance.

Recommendations Document on the Web!

The final document will be on the web from the middle of June.

The document will be used by the MS Society to apply for funding. It can also be used by people with MS to learn more about rehabilitation and talk to their health care providers or GPs about if rehabilitation is suitable for them. Simply go to:

www.ms.asn.au under ‘Services’ and then ‘Projects’

What's Next:

We will be presenting our findings to two different groups of health professionals to increase awareness of the issue and also to tell them about the project recommendations.

The first presentation will be made at the Day Rehabilitation Centre at Hampstead.

The second presentation will be made to the Statewide Rehabilitation Clinical Network’s workgroup for Complex and Progressive Neurological conditions. The purpose of the workgroup is to inform the government about the rehabilitation needs of people with progressive neurological conditions, like MS, and develop a new model of rehabilitation in the future. The evidence and recommendations that we have developed in collaboration with you will help the group to arrive at a model that meets the needs of people with MS.

Examples of Draft Recommendations:

At our second reference group meeting (held 6.5.09) we discussed the barriers that people with MS experience. From these discussions we developed a draft set of recommendations about MS rehabilitation. During our investigation the information we have gathered seems to suggest several themes. Below are examples of the draft recommendations using the themes as headings.

For a full set of the recommendations, please contact us.

Pathways to Rehabilitation:
- When someone experiences an abrupt or gradual worsening in function, they should be able to access rehabilitation
- Access to rehabilitation should be available as the need arises, through a GP referral
- Re-entry to rehabilitation should be simple and outlined at discharge

Nature of services:
- Rehabilitation programs need to be as flexible as possible, and clients should have a choice in appointments
- Achieving agreed goals should determine the length of the treatment, not a fixed number of appointments

Continuity of Care:
- People should be referred to exercise programs after rehabilitation to maintain the benefits gained at rehabilitation
- People with MS should be able to negotiate a form of follow up that suits their needs

Health Professionals:
- There should be a range of health professionals available to people with MS
- There should be a single contact for the person with MS. This key person will be able to monitor any changes in function, as well as co-ordinate services
- Staff should have a good understanding of MS. The MS Society is willing to provide education to service providers

Access & Equity:
- Assistance with transport should be provided
- Rehabilitation equipment should meet the needs of people with MS at all stages of their disease, eg equipment appropriate for wheelchair users

Whilst the social aspect of rehab is very important, social groups separate to rehabilitation are not within the scope of the project.

What the guidelines say

The guidelines about MS and rehabilitation from the US, UK and Europe have been reviewed. They supported what people with MS have said is important to them. The guidelines agreed that:
- Appointment times need to be flexible
- Rehab’ services need to be flexible to allow for the effects of fatigue
- Number of visits should be extended when needed
- Easy re-entry to rehab programs when needed
- Distance for people to travel should be as short as realistically possible
- Staff need a good understanding of MS
- To feel heard, understood, respected and cared for
- Clear communication - good explanations and information about treatment
- Follow up from staff – staying connected to feel supported and less isolated
- Being connected with other services in the community
- Practical information to help find the entrance, contact the staff, change appointments, park and organise transport


The guidelines did not directly address the following points, however health professionals agree that these are important to consider when setting up a service for people with MS:
- Pool needs to be at the right temperature
- Social groups, separate from exercise
- Assistance with transport should be available and timely/affordable
- Being in a group for people with MS
- A service to maintain the benefits gained through rehab (eg exercise group)

What are your thoughts? Please click on 'comments' (in red on the bottom right of this message) and tell us what you think!

New Project Logo and Business Card

We are proud to present the new logo and business card of our project.

The logo and card have been designed by Ian Wilson, a client of the Multiple Sclerosis Society of South Australia and the Northern Territory.

Thank you very much Ian!

Welcome

Hello and Welcome to our project's blog!

This blog will be used to let you know how the project is going and give you a chance for you to have your say. We want to hear about your experiences and about what you think is important for rehabilitation so that we can make a project that works for you.

We look forward to hearing from you

Thanks!