Moving forward with advocacy

Wow! The Month of May really did whizz by and I’m sure so many of you in the MS community feel the same with so much activity and promotion of MS events and campaigns.

May is always a busy month for MS Australia and our member organisations. It is a fantastic opportunity to feature campaigns and initiatives that help to shine a light on multiple sclerosis and the enduring issues facing people affected by the disease in the lead up to World MS Day.

I am so proud of the way MS Australia and our state member organisations contributed on that front this year. There were so many worthwhile campaigns and events in the marketplace which really gained traction and attention for MS and the various MS affiliated brands.

Senator Lundy with Andrew Potter MSA Board Chair, Vice Cahir and myself

Senator Lundy with Andrew Potter MSA Board Chair, Vice Cahir and myself

MS Australia, and our national advocates enjoyed a great reception at Parliament House in Canberra for the Parliamentary Friends of MS function. There were numerous sitting members who attended the event which was hosted by the Chair of the Parliamentary Friends Group Senator Kate Lundy.

Advocates had the opportunity to speak with members of Parliament and Senator Lundy addresses the event.

Advocates had the opportunity to speak with members of Parliament and Senator Lundy addresses the event.

There were several highlights to the event including the announcement that we have been able to secure a new Co-Chair, Liberal Senator David Bushby from Tasmania. It was thrilling news and we are so excited to have Senator Bushby on board and to know that we continue to enjoy bipartisan support.

I would also like to say a special thanks to Andrew Potter, the new National Advocates Coordinator who, a week into his role, ably stepped up to MC this event.  It was also very moving and insightful for guests on the day to hear from Natalie Walsh, a National Advocate from Queensland who spoke about her journey with MS. Natalie’s story and her grasp of the key issues facing the MS community was so spot on and it was a valuable message to share with some of the country’s most senior decision makers.

I really felt energised leaving the event. World MS Day in Canberra allowed us to make several great connections and  I look forward to continuing to knock on the door of parliamentarians to discuss our advocacy framework.

On a final note I am extremely grateful to be able to call upon the support of Senator Kate Lundy and her ongoing commitment to supporting MS Australia is wonderful. This event would not have been possible without her and the support of her staff.

 

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Tasmanian campaigner to lead national advocacy

I am delighted to announce the appointment of Andrew Potter as the new National Coordinator of the MS Australia Advocates Program.

Andrew has been a long time champion of the needs of people with MS and has been an Advocate with MS Australia since the program began six years ago.

PotterThere is no better person in Australia for this task.

Andrew has already hit the ground running building the advocates program so people across the country living with MS have the broadest and most effective representation possible.

WORLD MS DAY

Wednesday May 28 is World MS Day. It is a chance to celebrate and be thankful for the vital services and support available to people with MS in Australia and around the world.

But it’s also a day to shine a light on the ongoing issues faced by people with MS.

That’s why on this World MS Day Multiple Sclerosis Australia will be in Canberra meeting with our political leaders to push for more support for people with MS.

The recent Federal budget reaffirmed the commitment to the National Disability Insurance Scheme – this is good news.

As is the commitment to a 20 billion dollar Medical Research Future Fund – an innovation to help Australian researchers fight diseases like Alzheimer’s, diabetes and multiple sclerosis.

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But MSA is taking a strong stand against the plan for people under 35 who access the Disability Support Pension to complete periodic medical assessments to determine their eligibility for the scheme.

We are also against the Medicare co-payment, for charges for visits to out-of-hospital pathology and imaging services, and to capping provisions of the Medicare Safety Net.

We are standing against these measures because they make it harder for people with MS to receive rebates for high out-of-pocket costs and the increased cost of medicines and pose barriers to a timely diagnosis, to seeking treatment and to getting appropriate medicines.

And so I assure you your voice will be in heard in Canberra on World MS Day and indeed on every day as we fight for your interests.

 

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Looking ahead to the Federal Budget and what it means for people affected by MS

In writing this week’s blog I can’t help but look ahead to next week when the Federal Government will deliver the Federal Budget 2014-15.

There has been much conjecture in recent weeks about what the budget will include and regardless of what does lie ahead  it is fair to say that there will be reform proposed and there will be cuts made across a number of sectors.

MS Australia has been keeping abreast of these issues as we approach budget day and there are some definite things to look for.

NDIS

The first is discussion about slowing the rollout of the NDIS.  Treasurer Joe Hockey as well as senior bureaucrats have eluded to the fact that the current timeframe to deliver the NDIS is not feasible. This has peaked the interest of many commentators and members of the disability sector who have highlighted that not only is the NDIS affordable, the cost of the NDIS to the Government is minimal, as this graph from the Australian Financial Review demonstrates.

 

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This provides a great sense of perspective on the NDIS amidst a lot of the cost debate and hopefully this issue has been put to bed. Last week we saw the most definitive response yet as all state premiers voted to continue the rollout as per the agreed timeframe and cost projections. On Wednesday, speaking at the Deafness Forum of Australia in Brisbane, Senator Mitch Fifield also said definitively that the NDIS would be delivered ‘come hell or high water’ which is fantastic news.

Disability Support Pension

Another key issue that has caused some concerns for members of the MS community is talk of reform to the Disability Support Pension specifically, the creation of a ‘tiered’ scheme.

In canvassing this issue, I have taken heart from Minister Kevin Andrew’s statement that “we want to help people to be able to stay in work wherever possible”.

That is a view we support. There are obvious benefits to people with MS being able to work for longer  and recent research from MSRA suggests that people with MS who disclose their condition to their employer are able to stay in the workforce longer. Currently the fact 50% of people with MS are out of work within 10 years of diagnosis is something we have to address and we welcome measures that assist people to stay at work.

However we are concerned about the plan to move towards a tiered system. Minister Andrew’s has described this system would mean  “younger people, say under the age of 30, 35” would be subjected to medical “reassessments” with doctors to determine if they are still suitable for disability support.

These reassessments are not likely to be suitable for people with MS who need expert medical care from the point of diagnosis including meetings with specialists like neurologists. Furthermore many people diagnosed with MS will have an  intermittent need for medical care and income support and this may not reflect well in ‘reassessments’.

MS Australia has made a commitment to discuss this issue further with Minister Andrews and other parliamentarians and I look forward to updating you on these discussions in the weeks ahead.

National Commission of Audit

In the lead up to the budget we have also seen the release of the Audit Commission Report which has suggested some wide-sweeping reform in order to limit future costs to the Government.

There are a number of health care issues that stand out but the most relevant to people with MS will include:

  •  A $15 co-payment for all Medicare services including GP visits and pathology tests
  • The establishment of a ‘PBS Entity’ as an independent agency to oversee the management of subsidised pharmaceuticals in Australia. Part of this will also include a recommendation to afford the Minister for Health the flexibility to have new items listed on the PBS by tabling a legislative instrument in Parliament.
  • A proposal to slow the rollout of the NDIS which I have already touched on, and
  • The introduction of hospital emergency department charges and increased costs for medicines

We will endeavour to keep a close eye on these issues and raise them during future advocacy discussions with parliamentarians and decision makers.

We will also keep an eye out for them in the budget and respond if necessary.

Meeting David Bowen - CEO of the NDIA

Meeting David Bowen – CEO of the NDIA

On another note,  I had the opportunity to travel to Geelong this week to meet with David Bowen the CEO of the National Disability Insurance Agency.

The NDIA is working incredibly hard to keep pace with the required rollout of the NDIS  and they are facing a number of challenges such as obtaining robust data about how people are interacting with the scheme thus far.

However I found David very knowledgeable and he didn’t shirk away from any difficult conversation.

I was particularly heartened by his understanding of MS and the complexity of needs of people living with MS and the need to manage them through in the health system, the disability sector and aged care depending on their personal situation.

I also had a very productive meeting with the Shadow Health Minister Catherine King

I also had a very productive meeting with the Shadow Health Minister Catherine King

Meeting David followed a recent discussion I had with Catherine King, the Shadow Health Minister  in Ballarat.

I have thoroughly enjoyed these opportunities and with more planned am pleased that we are making headway in building relationships and having a voice at the table of discussions.

 

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Connections and collaborations…

Wow, I have to begin with an apology. It has been quite some time between posts but its good to be back blogging as I’m very pleased to provide an update on some key milestones achieved by MS Australia in recent weeks.

Meeting Senator Fifield

With so many charities operating in the disability sector there is intense competition at times to arrange meetings with key decision makers.

As such it was extremely fortunate that MS Australia recently had an opportunity to meet with Senator Mitch Fifield, the Minister Assisting the Minister for Social Services and importantly the minister responsible for the NDIS, to discuss MS Australia and our advocacy agenda.

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It was a great meeting and I was singularly impressed by the Senator.

He was very encouraging of MS Australia and had a sound understanding of the organisation, our structure and the relationship with the state societies. He also indicated he knew the National  Advocacy Program as he met and presented Robert Pask with his National Disability Award at a gala event last year.

The conversation covered a variety of things including the value of social and applied research, the NDIS and the value of more trial sites and the advocacy plans of MS Australia in 2014.

It was extremely encouraging to hear the Minister’s willingness to work and listen to a variety of perspectives from the disability sector and we look forward to an ongoing dialogue with his office about key issues for people affected by MS.

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Each year World MS Day, the international day to recognise people affected by MS continues to grow.

This year World MS Day will be on Wednesday, May 28.

MS Australia is proud to be a member of the Multiple Sclerosis International Federation, the global body responsible for World MS Day and will be holding a number of various events around the country raising funds and awareness about living with MS.

MS Australia will mark the occasion with a morning tea at Parliament House with the Parliamentary Friends of MS.

The theme for World MS Day this year is Access and the team at MSIF is hoping to raise awarness about four very important key messages:

  • There is no known cause or cure for MS.
  • MS is usually diagnosed between the ages of 25-31 and lasts a lifetime.
  • People with MS have varying symptoms.
  • Treatments and services are improving for people with MS, but not for everyone, everywhere.

MSIF have recently commenced blogging about the global World MS Day effort and released a Youtube video, you can view all this material at the MSIF World MS Day blog.

National Position Statements

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Finally, I am extremely pleased that MS Australia can now share some vital information for our supporters and key stakeholders. This includes nine National Position Statements  which reflect key issues of importance to the MS community. They are wide ranging and varied and cover topics such as energy costs, research investment, universal housing design and home and community services.

The positions outlined in each document are carefully considered and have been based on evidence, primarily obtained from MS Research Australia’s 2012 study the Needs Analysis for people with MS.

I would like to thank our state member organisations and the MS Australia board for their vital thoughts on these statements. They will provide a great resource for us to share with Government and key decision makers throughout 2014 and beyond.

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Guest Post – An international care perspective from Denmark

Recently I was contacted by Kate Long. Kate is an Occupational Therapy student at Deakin University who has just completed a placement in Denmark working specifically in MS care.

Her blog  gives a great insight into how Denmark, which has a significantly higher prevalence of MS compared to Australia, manages MS care.

I thought it would be appropriate to share Kate’s story. It highlights the international effort that is underway to care for and fight MS. This was reinforced this week when I received contact from the MS Club Kenya who are preparing for their first ever group meeting this weekend in Nairobi. The fact a small group in a developing nation such as Kenya have created an MS Club – which they hope to grow into a formal ‘society’ – goes to show that regardless of where we are in the world there is a combined effort to work towards a common goal and that is a world without MS.

I hope you enjoy Kate’s insights into Danish MS care. Thank you so much for sharing Kate.

 DANISH MODEL OF  MS CARE

I recently had an amazing opportunity to complete two weeks work experience at “Sclerosehospitalet” in Denmark. The hospital is unique as it designed specifically for people with Multiple Sclerosis. In Denmark the prevalence of Multiple Sclerosis is high, approximately 12,500 people in Denmark have MS (Scleroseforeningen [SF], 2013). There are two MS specific hospitals in Denmark. I was based in Ry, Jutland.

The hospital in Ry is surrounded by beautiful scenery; the hospital faces the river Gudenaa and has scenic views of the forest and hills.

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Sclerosehospitalet

The hospital provides expert individualised rehabilitation for people with MS. The hospital caters for people with a recent diagnosis and for people with advanced multiple sclerosis. For people with advanced MS, a home visit is always conducted prior to admission, if it is more suitable for a person to stay at home, “rehabilitation in the home” is offered. Admission to the hospital is completed via GP referral. There is no cost as the Danish government provides funding for the hospital. Each person at the hospital has a tailor made rehabilitation program. The duration of the program can be 2 or 4 weeks long, this is dependent on the person’s condition and their goals for rehabilitation.

a view from the Hospital across the river

a view from the Hospital across the river

Whilst I was at the hospital I had the opportunity to observe and participate in some of the various therapies. Hippotherapy was a something I knew little about. Hippotherapy is the use of horses for therapy; I learnt that the rhythmic patterns felt whilst riding horse back are similar to that of walking, activating and working the pelvic muscles. Hippotherapy also assists with balance and coordination training, strength and endurance, stretching and relaxing muscles with spasticity and postural training. The therapy also has psychological benefits. I was able to try hippotherapy myself; the horses took us on a scenic track through the forest.

Horse riding is one of the many recreational hospital activities

Horse riding or Hippotherapy

I was also able to observe activities such as basket weaving and leather making. These activities are designed for hand function maintenance and training. Patients reported they enjoyed participating in activities as they learnt a new skill and also had a piece of art to take home from the hospital.

basket weaving classes

basket weaving classes

The hospital runs a range of education sessions including education about energy management, relaxation, urinary dysfunction, sensory issues and sexual intimacy.

They also offer a number of therapies including, physical therapy, hand function training and cognitive training. I participated in a number of cognitive training groups, in the sessions we completed a variety of exercises for the brain, the sessions were fun and involved lots of laughter however were also challenging.

Being a non-Danish speaker on occasions I communicated with patients through body language. I was amazed at how much information others and I were able to communicate and also how much I was able to pick up during patient interviews and therapy sessions.

I had the opportunity to interview patients about their experiences at the hospital. Patients stated they valued the expertise of the staff, found it beneficial learning from other patients and sharing their experiences, one person explained that all aspects of life were discussed at the hospital and this was a big difference to other facilities, discussions about emotion health, sexuality and intimacy were seen to be very valuable and rewarding for individuals.

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the beautiful grounds of the hospital

I am extremely grateful for my experience at the Sclerosehospitalet. It has been an incredibly valuable learning experience; I would like to thank everybody at the Sclerosehospitalet for accommodating me. In particular I would like to thank the Ergotherapi department who have gone out of there way to make this a rewarding experience, the time and effort they have put into my experience has been amazing and I am very appreciative. It is an experience I will never forget.

Kate Long, is an Occupational Therapy student from Deakin University, Geelong . She completed a two week placement at Sclerosehospitalet an MS specific hospital in Denmark in November last year.

Reference

Scleroseforeningen. (2013). Statistik om sclerose. Retrieved from http://scleroseforeningen.dk/statistik-om-sclerose

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Moving forward in 2014

2014 is now well and truly underway for the MS Australia team and I’m delighted to update on come very encouraging recent news.

Carer rallies community behind MS treatment

Yesterday I had the pleasure of accompanying Brenda Fisher, an Ambassador for MS ACT/NSW/VIC and a carer who has taken it upon herself to compile a petition in support of the MS mobility treatment FAMPYRA and its subsidisation on the PBS. In a fantastic example of advocacy work , Brenda, whose husband Mark was diagnosed with MS more than 18 years ago, has rallied the community behind her petition and over the last 12 months she has worked tirelessly, raising awareness of the campaign and gathering signatures of support.

Brenda and I at Senator Ryan's office.

Brenda and I at Senator Ryan’s office.

Yesterday she presented these signatures, all 10,503 of them to Victorian Senator Scott Ryan who has agreed to table the petition in the Senate.

MS Australia is supportive of more treatments being subsidised for people affected by the disease. MS is a complex condition with no two cases the same. People diagnosed with MS need choice and flexibility with treatment options so they can work with their doctor and healthcare team to find the treatment that is right for them.

Here is a link to more coverage of Brenda’s petition: http://www.australianwomenonline.com/wife-and-mother-proves-one-person-really-can-make-a-difference/

Australia Day Honours for MS Ambassador and Hero

Australian Paralympian and the driving force behind the MS Mega Swim fundraising concept Carol Cooke, was recently acknowledged for her athletic achievements and years of service to the MS community by the Australia Day Honours List being made a Member of the Order of Australia.

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I have met Carol a number of times and she is a truly remarkable person who demonstrates that so much can be achieved despite a  diagnosis of MS.

For more read Carol’s blog post on the topic.

Progessive MS Alliance

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One of our key roles as a national peak body is to work with our international partners and MS Australia is a proud member and contributor to the work of the Multiple Sclerosis International Federation.

A recent project that has gathered considerable momentum is the Progressive MS Alliance a collaborative effort to unite MS socieites around the world and to raise awareness of the need for further research into progressive forms of MS.

The Alliance is currently soliciting proposals from the global MS research community using a variety of funding models for work specifically dedicated to progressive forms of the disease.

By working together, it is hoped we can raise greater awareness of the disease, we can connect  resources around the globe and we can focus on developing the innovative solutions to bring treatments to people and ultimately an end to progressive MS.

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Guest blog: MS Angels bring hope for people with MS

Welcome everyone back to 2014. It promises to be a big year for MS Australia and I’m looking forward to keeping you informed about key milestones, events and meetings throughout the year.

I’m so pleased to kick off the year with a guest blog which highlights one of our great fundraising support groups, the MS Angels and MS Saints from Angels Coordinator  and MS Research Australia staff member Mandy Lee.

MS Angels bring hope for people with MS

The MS Angels have just finished a fantastic year of fundraising for MS research, culminating with a special event in Sydney in December featuring author Jillian Kingsford-Smith, who has just written a fantastic book entitled ‘Taking control: A guide for getting on with life after being diagnosed with MS’.

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Canberra MS Angels members meet with Senator Kate Lundy – Chair of the Parliamentary Friends of MS

The Angels are a network of senior, well-connected women from the business and government community, who are dedicated to helping multiple sclerosis research in Australia and donating their time and funds in a way that allows them to network with other interesting women.

The Angels were founded in Sydney in 2009 by two female executives who each had a sibling with MS.  They wanted to make more than the usual contribution to MS research and this, combined with the increasingly worrying outlook for corporate women in late 2008, spurred the idea of recruiting an exclusive and diverse group of fabulous corporate women – current and future leaders – who could contribute to MS research and also work together to build a quality women’s network.

In 2010 the MS Angels expanded to Canberra and in 2011 groups were launched in Melbourne and Brisbane.  Each MS Angels group consists of approximately 20 dynamic female executives, each of whom has made a personal commitment to supporting MS research in Australia.  Many MS Angels have a personal connection to MS, but others have chosen to support a great cause, whilst at the same time benefiting from high-level networking with other senior women.

Each year the Angels raise over $100,000 towards MS research and this is often matched by their companies to mean even more funding goes to the research where it is most needed.  Earlier this year the guys got in on the action and a group of executive men, named the MS Saints, was established to fundraise for MS research.

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MS Research Australia CEO Dr Matthew Miles (left) and some of the MS Saints with Dr Brendan Nelson

Each MS Angels and Saints group meets six times per year for a series of exclusive events featuring high profile guests, meaningful networking and career development opportunities.  Each group selects a specific MS researcher to support with their funds for the year (from a range of approved projects presented to them by MS Research Australia) and that researcher provides regular reports on the progress of their work.

This year’s event program ended on a real high with the Brisbane Angels meeting the QLD Minister for Disability, the Hon Tracy Davis MP; the Canberra Angels being hosted by Senator Kate Lundy at Parliament House; the Melbourne Angels hearing from Andrea Fung of the Australian Charities and Not-for-Profits Commission; and on Tuesday the Sydney Angels being treated to a talk about maintaining work-life balance by acclaimed journalist and author, Jillian Kingsford-Smith.  Of course there is a bit of healthy rivalry between the Angels and the Saints and the guys did very well this year in securing the Honourable Dr Brendan Nelson as their end of year guest speaker.

The most important thing about these groups is the significant funding they raise for MS research – and since 2009, not only have they allocated over $500,000 to their chosen MS research projects, but some of these projects have gone on to gain significant Government funding, meaning an additional $2 million has been leveraged for projects the Angels initially seed-funded – a fantastic result.

Please follow these links if you are interested in learning more about the MS Angels or the MS Saints.

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