D.F.P.S.

On Saturday morning, the inaugural AGM for the DFPS was held. As a short summary, the following individuals were nominated for positions:

President: Greg Betros
Vice President: Matt Betros
Treasurer: Sandra McKenzie
Secretary: George Seabrook
Public Officer: Penny Marshall
Committee Position 1: Barbara Buttfield
Committee Position 2: Nicola Heelis
Auditor: Mr Trevor Basso of Basso Newman & Co

Currently, DFPS is awaiting further responses from the Australian Taxation Office (ATO) to obtain Tax Deductability. Essentially this means that any donations made to the organisation will be tax deductable to individuals or businesses.

Also on the agenda, was the topic of fund raising and memberships. This will be a continuing discussion in the coming weeks as we await approval from the ATO.

It was agreed by the group that we should be also approaching other organisations in order to register them as associate members of the DFPS, thus increasing awareness of our plight. It is an ongoing action from the AGM that we identify those potential affiliates and implement a plan to register and publish our concerns.

The topic of media and press releases was raised. Greg will be meeting with representatives from the Sunday Mail this week to discuss the potential inclusion of a story in the paper. It is important that the letters to the editor are coordinated through George to ensure that each story carries the same passion and emotion in a manner that will be accepted by the media. To this effect, a template for such items is being prepared.

Acknowledged at the AGM was the significant role played by carers and in particular younger children. It was agreed that without carers our plight would be much worse. With this in mind, it is anticipated that several meetings will be held to gather not only the mature aged carers but also the children who care for those suffering from chronic pain.

The first AGM was a great success. Many thanks to those who attended.

We have recently incorporated Dignity for Chronic Pain Sufferers and are in the process of meeting all the legal requirements to ensure that the organisation is tax exempt and donations are tax deductible.

You are invited to our first Annual General Meeting to be held at 10.00AM Saturday 10th October 2009 at the Disability Information & Resource Centre, 195 Gilles Street, Adelaide.

All positions, Chair, Secretary, Treasurer and two Committee Members, are open for election. An auditor must also be appointed for the next year.

As we are limited for space in the meeting room please RSPV by email. You can contact us here.

On a completely separate note, Philippa informs us that chemists around Victoria are selling badges to raise funds and awareness for the Pain Management Research Institute to improve pain management in adults and children.

Their website is www.windowsonpain.org

Thanks Philippa for the great forward!

Prior to scribing a letter to caucus members on the 29/6 and 7/7 of this year, our Secretary, George Seabrook formulated a summary of our situation as it currently stands.

Whilst headway is slowly starting to be made and our pleads for help are starting to be recognised, it is always good to do a quick sanity check to see where we stand.

The summary has been posted here: http://www.dfps.org.au/?page_id=67

Dear members,

You will have seen a segment on Channel Seven’s Today Tonight program on the 19^th of this month and a news article in today’s Independent Weekly. We are pursuing this publicity on your behalf.

 Unfortunately both the segment on the television and the article on the Independent Weekly have incorrect factual information regarding my wife Trish. While Trish does suffer from debilitating pain she is being provided sufficient pain relief medication by her treating doctor at Warinilla. That does not mean to say that she is pain free it just means that she can tolerate her pain. These news items have misquoted me.

I have made it quite clear to the media that the reason why I am still prepared to be Chairperson of this organisation is because I feel I have a moral obligation to represent you, the chronic pain sufferer. I cannot in all conscience resign from this role just because Trish is now being looked after. 

I am committed to our cause to get adequate pain relief for all chronic pain sufferers.  To that end we are going to continue our campaign to get the system and the process of dispensing pain relief medication changed.

We do not, nor have ever, condoned the taking of opiates for any reason other than the relief of pain. We applaud the SA Government in their stand against people who take opiates but who do not have an underlying condition which causes them pain.

You, the long term chronic pain sufferer deserve to be treated with dignity.  Many of you are treated as drug addicts which is simply not the case.  The problem of the lack of treatment is gradually getting worse in SA. We cannot allow this situation to continue.

The current objectives of the DFPS are:

1. That all long term chronic pain sufferers be provided with appropriate and adequate pain relief to enable them to lead their life with dignity.
2. That patients suffering long term chronic pain are able to exercise their basic right in selecting their Doctor of choice to manage their pain.
3. That those Doctors gaining the appropriate authority to prescribe high dosage drug relief medication including opioid medication are able to do so without fear of retribution.

Greg   Betros BE, MIEAust, CPEng, FAIPM, Grad Dip Th. Studies

Chairperson

In late 2007 and early 2008 many long term chronic pain sufferers who were treated by Adelaide’s world renowned pain specialist Dr. Ian Buttfield, were left without any treating doctor as a result of Dr. Buttfield’s authority to prescribe opioid pain relief medication being terminated by the SA Government.

Many of these long term chronic pain sufferers, who had been provided with adequate pain relief and led normal productive lives, had their pain relief medication stopped by DASSA (Drug & Alcohol Services SA) or put on methadone treatment regimes which did nothing to assist in the management of their pain.  Many of these people were forced to go to a drug and alcohol clinic as drug addicts and are now unable to go to the doctor of their choice to obtain adequate pain relief medication. These people are no longer able to cope with their pain and now lead a life of misery with dire consequences, such as one patient having his children removed from his care by the SA Government.

As a result of these actions taken by DASSA a number of carers of the long term chronic pain sufferers got together and decided to form the Dignity for Chronic Pain Sufferers (DFPS). I, Greg Betros was elected as Chairperson and Mr. George Seabrook was elected as Secretary.  The DFPS has currently about 80 registered members but we are aware that there are many more long term chronic pain sufferers in the SA Community. It has been estimated that there may be as many as 500 people.
On behalf of the long term chronic pain sufferers I have written to the Minister for Alcohol and Substance Abuse the Hon. Jane Lomax-Smith on several occasions outlining the general plight of the members of DFPS and in some instances giving particular examples of harshly treated members. To date we have not received a formal response to these letters.

The Minister has met with me and our Secretary Mr. George Seabrook on two occasions. As a result of these meetings some of our members have received adequate pain relief medication. The Minister appears to be aware of what she termed a “systemic problem” in the treatment of long term chronic pain sufferers.

However, our members continue to suffer from lack of proper care because of the interference of the Drugs of Dependence Unit of DASSA in the medical treatment of long term chronic pain sufferers. Some of our members are being denied basic medical care because they require pain relief medication. This is a basic violation of every person’s right to adequate medical treatment.

Both the Secretary and myself have been phoned on a number of occasions by long term chronic sufferers or their carers complaining that their treating doctors are too scared to continue to prescribe opioid pain relief medication for fear of being reported to the Medical Board who appear to pass judgement on doctors without proper investigation or the right to present the medical details of their patients.

It has also been brought to our attention that some medical practices in South Australia have now put up signs stating that they will not prescribe opioid pain relief medication and in some instances will not even treat these patients with a medical condition unrelated to their cause of the long term pain.
Some of our members have moved interstate to receive adequate treatment for their medical problems as well as receive adequate pain relief.

Many of our members are treated as drug addicts which is simply not the case.  The problem of the lack of treatment is gradually getting worse in SA. We cannot allow this situation to continue. Our members are human beings who have a right to a dignified life but are being denied their pain relief because the SA Government’s DASSA bureaucracy deems that the opioid medication previously prescribed by their doctor is excessive.

The current objectives of the DFPS are:
1. That all long term chronic pain sufferers be provided with appropriate and adequate pain relief to enable them to lead their life with dignity.

2. That patients suffering long term chronic pain are able to exercise their basic right in selecting their Doctor of choice to manage their pain.

3. That those Doctors gaining the appropriate authority to prescribe high dosage drug relief medication including opioid medication are able to do so without fear of retribution.
G. G. Betros BE, MIEAust, CPEng, FAIPM, Grad Dip Th. Studies
Chairperson
Dignity for Chronic Pain Sufferers

On the 25th July, 2008 and the 7th August, 2008, two letters were drafted and sent to The Minister for Mental Health & Substance Abuse, The Hon Dr Jane Lomax-Smith, on behalf of the DFPS. Please take a moment to read them.

Link 1: http://www.dfps.org.au/?page_id=55
Link 2: http://www.dfps.org.au/?page_id=54

Firstly, thanks to everyone who has either registered to the site or has left a comment on the petition page. Your support is vital in trying to get our message heard.

If you have the time to spare, we would like to invite you to continue to show your support by sending emails to your friends, informing them of our cause. The more members we have, the more the petition gets noticed, the more chance we have of winning this fight for sufferers.

Your support is very much appreciated. Watch this space for regular updates!

A quick update for those looking to register as a Pain Sufferer for the membership drive. Please send an email to our Secretary at:

secretary@dfps.org.au

Your details will then be added into our database.

In the meantime, if you would like to recieve updates, then you can register for our website separately here.

Please take a moment to register to our website. By registering as a member of the site, you will have the opportunity to receive regular updates on our cause as well as handy support links, newsletter articles and more.

Not only that, but it helps show the world that you care along with many more!