Towards Nationally Endorsed Australian Guidelines for the care and support of Families living with Multiple Sclerosis

 

 

 From: Eva and Peter Sullivan [mailto:sullys452@bigpond.com]
Sent: Tuesday, 28 July 2015 10:18 AM
To: 'Natalie Jennings' <Natalie.Jennings@ms.org.au>
Subject: RE: Correspondence on behalf of Peter Day - National Services Leadership Group (NSLG),

Peter Day, Chairman Multiple Sclerosis Limited

 Dear Peter 

Thank you for your prompt response.

While not necessarily directly related to this specific matter there is a broader, and potentially over-arching issue. As you would be aware Australia has no NHMRC endorsed clinical guidelines for the primary and secondary care of people with multiple sclerosis. As part of an ongoing process that commenced in 2003, this matter was last taken up by the Network of Care with Debra Cerasa, CEO MS Australia in October 2014 who said

"A plan" for this work has been on the MSA agenda for some time. MSA, in conjunction with the State MS Societies National Services Leadership Group (NSLG), is currently considering how we can facilitate an appropriate review of the NICE guidelines that will be beneficial across all stakeholders, given that we have no allocated resources for such a development. I also recognise that the MS Nurses Association, the Australian Neurologists with special interest in MS, MS clinics in hospitals and other groups also have a keen interest in this discussion".

Despite subsequent requests the Network has heard nothing further. Are you able to provide guidance on MSA’s current position?

Extensive background information is at http://www.msnetwork.org/horizon/standards.htm

Best Regards
Peter Sullivan
28 July 2015


 

From: Natalie Jennings [mailto:Natalie.Jennings@ms.org.au]
Sent: Tuesday, 21 July 2015 3:51 PM
To:
sullys452@bigpond.com
Subject: Correspondence on behalf of Peter Day

 

Dear Peter,

Please find attached correspondence on behalf of Peter Day (Chairman Multiple Sclerosis Limited)

An original copy has also been posted in the mail.

Kind Regards

Natalie Jennings
Executive Personal Assistant

Executive Office

 

T 03 9845 2702
F
03 9845 2777
E
Natalie.jennings@ms.org.au
W
www.ms.org.au  


 

From: Eva and Peter Sullivan [mailto:sullys452@bigpond.com]
Sent: Sunday, 7 June 2015 12:43 PM
To: Debra Cerasa - CEO MS Australia (Debra.cerasa@msaustralia.org.au) <Debra.cerasa@msaustralia.org.au>
Subject: Australian MS Care Guidelines - an appropriate review of the NICE guidelines

Hi Debra

 On 10 October 2014, you advised "A plan for this work has been on the MSA agenda for some time. MSA, in conjunction with the State MS Societies National Services Leadership Group (NSLG), is currently considering how we can facilitate an appropriate review of the NICE guidelines that will be beneficial across all stakeholders, given that we have no allocated resources for such a development.

 I also recognise that the MS Nurses Association, the Australian Neurologists with special interest in MS,  MS clinics in hospitals and other groups also have a keen interest in this discussion".

 Could yo6 kindly advise whether the Board of MS Australia has yet established its policy position on this important matter.

 Best regards

Peter Sullivan, on behalf of
Multiple Sclerosis Network of Care, Australia
 
Subject Reference -
http://www.msnetwork.org/horizon/standards.htm

 


 

From:                                         Debra Cerasa <Debra.Cerasa@msaustralia.org.au>

Sent:                                           Friday, 10 October 2014 9:09 AM

To:                                               Eva and Peter Sullivan

Cc:                                               Andrew Giles

Subject:                                     Re: Australian standards for the care of support of people with MS.

Thank you for the reminder of your contact in August 2014, Peter.

Since my appointment to MSA there has been ongoing discussion of "clinical guideline" for use in Australia.  It comes as no surprise there are a number of interested stakeholder groups in such a development.  Last year during conversation with NICE in UK, I was made aware of revised guidelines and as a result, MSA have been awaiting the release.

Andrew Giles, MSA Policy Officer, will be liaising with the State MS Societies National Services Leadership Group to discuss the recent release and a "plan" for this work has been on the MSA agenda for some time.  It was viewed that as resources are always limited, it was appropriate for MSA to wait for the release of the guidelines.

I also recognise that the MS Nurse Association, the Australian Neurologists with special interest in MS, MS clinics in hospitals and other groups also have keen interest in this discussion.

 MSA, in conjunction with NSLG, is currently considering how we can facilitate an appropriate review of the NICE guidelines that will be beneficial across all stakeholders, given that we have no allocated resources for such a project.

Thank you for your interest in this work and MSA. May I encourage you to touch base with me again a few months and I will provide an update of how MSA have progressed with this discussion.

Regards Debra 

Sent from my iPad



On 9 Oct 2014, at 2:28 pm, "Eva and Peter Sullivan" <sullys452@bigpond.com> wrote:

Hi Debra

In August 2014 I sought your advice about clarifying the position of MS Australia as related to progressing the establishment of NHMRC nationally guidelines for the care of support of people with MS. I had previously sought guidance from NHMRC on this topic who advised "Australia has no NHMRC endorsed clinical guidelines for the primary and secondary care of people with multiple sclerosis nor is it aware of any plans for their development". It went on to say "starting points' to initiate the development of such guidelines could include the State Chief Health Officers, the CEO of NHMRC or Australia's Chief Medical Officer and that funding is always an issue, so if there is a funding source, that makes it easier"

Last week the UK based NICE published its long awaited update to guidelines titled "management of multiple sclerosis in primary and secondary care" see link below

Proposals for Australia to build upon the work being undertaken NICE were, to the best of my knowledge, first raised in 2003 with much valuable work since undertaken.

I believe that it is very important for MS Australia to clarify its policy position on this fundamental issue.  I hope that you may be able to progress Board discussion

Peter Sullivan. On behalf of

Multiple Sclerosis Network of Care, Australia

see -

http://www.msnetwork.org/headlines/australian-standards.htm

 


From: Debra Cerasa [mailto:Debra.Cerasa@msaustralia.org.au]
Sent: Tuesday, 12 August 2014 11:17 AM
To: Eva and Peter Sullivan
Subject: RE: Australian standards for the care of support of people with MS.

 

Good Morning Peter,

Thank you for your email, in which you have raised a very important topic.

I have just returned from Annual Leave and am working my way through my inbox, so I will respond more comprehensively to your email over the next week.

Regards Debra


From: Eva and Peter Sullivan [mailto:sullys452@bigpond.com]
Sent: Sunday, 3 August 2014 3:04 PM
To: Debra Cerasa
Subject: Australian standards for the care of support of people with MS.

 

Hi Debra

I am in the process of responding to a request to provide the Network with an update on what is happening regarding the establishment of endorsed Australian standards for the care of support of people with MS.

An initiative about this was initiated in 2003 by the then Multiple Society of NSW  - well before the major restructurings  a couple of years later. It was intended to evolve as a national issue if the outcomes of some proposed long term benchmarking supported this.

Unfortunately, following the restructuring and some significant changes in key personnel, neither the newly formed MS Australia/NSW/VIC/ACT nor MS Research Australia seemed to see this project as falling within the framework of their developing  charters. I personally made a number of representations but did not press the point. Meanwhile the 2003 initiative continued to progress under its own momentum.

It occurs to me that this may be something that MS Australia may wish to support  – but  I am not sure. Could you kindly include this on the Board’s Agenda for clarification? 

In the meantime my discussion draft will shortly be referenced across the MS Network of Care for information purposes – see

http://www.msnetwork.org/horizon/standards.htm

Best regards

Peter

 

 

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