Why Would A 1-2 Year Old Prefer to Be Held Than To Move?

May 17th, 2012 by Julia | Click to leave a comment »

Helen has written in to us with a description of early indicators that her daughter was suffering with Ehlers Danlos.

When she was 1-2years old, we noticed she would want to be held but not sleep.  She would just watch everything, or talk a little, but she didn’t want to get down or move around the house.  She just needed to be supported bodily, but not her mind- it was still active.”

Some years ago now we launched a project to gather words and phrases children and teenagers use when telling people what it feels like to have Ehlers-Danlos.

We are also interested in hearing from parents about what they have have observed when their children were babies.

The project came about because parents told me it took a long time to find a diagnosis.

This gave me the idea that by blogging these terms or statements we could set out a trail of search terms for puzzled parents to find.

The project also compiles information for professionals who want to understand more about the experience of children who have Ehlers-Danlos.

Thank you Helen– this is a really helpful piece of the puzzle.

If you’d like to read our phrases list or you’d like to send your own contribution  please follow this link – How Children & Teenagers Describe Ehlers-Danlos.

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Health Minister Acknowledges Lack of Dedicated Pain Unit at PMH

May 17th, 2012 by Julia | Click to leave a comment »

The Health Minister The Hon Dr Kim Hames has sent me a letter in which he acknowledges  that there is no dedicated pain unit at PMH.

He goes on to say that chronic and complex pain services are spread across several departments.

I believe that this lack of co-ordination means that children with chronic pain and complex pain struggle to find support or services.

While the Minister acknowleges PMH does not have a specialist pain unit he does not say that anything is change.

Why does the Minister believe it is acceptable for adults in this Western Australia to have access to specialist pain units when children and teenagers do not?

You can read his letter Dr Kim Hames Acknowleges Lack of Pain Unit at PMH.

 

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Interviews on ABC Radio for A Dedicated PMH Pain Unit

May 13th, 2012 by Julia | Click to leave a comment »

It has been a busy week for our campaign for a dedicated pain unit at PMH.

Both Tracie Barker and I were interviewed on Geoff Hutchison’s morning show on ABC 720 in Perth.

I’m very grateful for the opportunity to present our story to the public and argue the cause for improved pain services for children in Western Australia.

For those of you who missed our interviews you can listen to them here.

ABC Radio Interview on PMH Pain Unit

Click the arrow to play audio

Julia Sutton, ABC Radio May 8th

Tracie Barker, ABC Radio May 8th

If you’d like to read more about our campaign or lend your support please visit Campaign For a Pain Unit At PMH.
PMH Needs a Pain Unit

If you have a story to tell about your experience at PMH you can send that to us at Share Your Story.

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Pain Article Library at Pain Australia Website

May 4th, 2012 by Julia | Click to leave a comment »

I’ve just published a link to a very useful website called Pain Australia.

You will find there the most comprehensive set of up to date articles on pain.  Here is the direct link to Reading Material.

It is so exciting to see resources like this emerging as a result of the 2010 Pain Summit.

Congratulations to every one involved in this fantastic initiative.

 

 

 

 

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“I’m trying but my body doesn’t do what I tell it to” – A Seven Year Old Describes Ehlers-Danlos

April 23rd, 2012 by Julia | Click to leave a comment »

Some years ago now I launched a project to gather words and phrases children and teenagers use when telling people what it feels like to have Ehlers-Danlos.

The project came about because parents told me it took a long time to find a diagnosis.

This gave me the idea that by blogging these terms we could set out a trail of search terms for puzzled parents to find.

The project also compiles a useful set of experiences for professionals who want to understand more about Ehlers-Danlos.

Today I am publishing another contribution to our phrases project.  It comes from Sarah and it is a phrase her seven year old used.

Thank you Sarah – this is a really helpful piece of the puzzle.

If you’d like to read our  phrases list or you’d like to send your own contribution  please follow this link – How Children & Teenagers Describe Ehlers-Danlos.

 

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PMH Needs A Dedicated Pain Unit – Here’s How You Can Help Make It Happen

April 16th, 2012 by Julia | Click to leave a comment »

We need a dedicated pain unit at PMH lead by a specialist in children’s pain.

I recently made a speech about this at the Health Consumers’ Council WA.

You can read that speech here PMH Needs A Dedicated Pain Unit.

Every one of us have the power to influence decision makers.

If you would like to help with this campaign please write emails and letters to-

PMH

Mr Philip Aylward
Chief Executive of Child & Adolescent Health Service
Princess Margaret Hospital
GPO Box D184
Perth 6840

The Minister

Mr Kim Hames
Minister for Health
28th Floor
Stirling Tower
197 St Georges Terrace
Perth 6000

Your Local State Member

It is also very valuable to speak with your local State member of parliament and ask them to write to the Minister for Health about your concerns.

There are many of us working to make this happen – please join us now.

 

 

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Young People With Pain Conditions Are The Best Judge

April 11th, 2012 by Julia | 2 Comments - click to view »

I had a brief conversation with another mother today about sport and school.

She was telling me how difficult it is to communicate with the school about how much activity is appropriate for her daughter.

While it’s been a while since this was an issue for us,  it  is a very familiar problem that parents raise.

Within minutes of starting the conversation,  something became very clear to both of us.

Children with pain conditions are the best judge of what is appropriate and what is not.

There is a fear that if we let children choose for themselves they won’t ever join in.  I think this is a false assumption.

I believe children and teenagers are concerned that they won’t be heard or respected when they say something doesn’t work for them.  For this reason they try to avoid sport altogether.

If they feel heard and know that they are free to join in as much as they want – then I think sport will be a safer and more attractive option.

It is difficult for hard working teachers to have the time and space to listen and respect the individual needs of each child.  What can result is a “make everyone do it” approach.

Perhaps what is needed is a permanent note that is laminated that says,

“Dear Sports Co-ordinator, My child has a pain condition that varies from day to day.  Please allow him/her to choose the level of involvement that is going to work best for today.  Please trust that when he/she can participate fully that is exactly what will happen.“

What do you think? Can you see that working? What is your strategy?

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Feeding Your Mitochondria

March 17th, 2012 by Glenn | Click to leave a comment »

An extraordinary story indeed.

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The Transition from Adolescent to Adult Health Services

March 12th, 2012 by Julia | Click to leave a comment »

When your child reaches maturity they will “transition” to the adult health system.  This can be a very bumpy ride so I suggest you plan for it.  Ask a lot of questions well in advance.

As much as possible you and your family need to think about future possibilities.  How will you handle a major pain flareup? It can be a shock when people and resources that have been a support base are no longer available.

You might also want to think about information security.  Be aware that files might not be kept at PMH for as long as you think.  If there is important information on PMH records make sure you request a copy through official channels.

Your adult child will then be able to hand on informaton to their new adult specialists about treatments they may have had.

Discuss transition plans with your teenager’s specialist team.  Follow up conversations and make sure you know what is going to happen and when.

What you are trying to avoid is a situation where your adult child needs assistance and the care team you are used to is no longer available.  You don’t want to be trying to access a new resource in the middle of a crisis.

Here is the list of dedicated Pain units in Perth as of March 2012.  If any of this information has changed please let me know so I can update this post for other parents.

Bethesda Hospital
Classification: Tier 1 Multidisciplinary Pain Clinic MPC
Facility Details: Achieve Pain Control Group
Bethesda Hospital
25 Queenslea Drive
Claremont WA 6010
Telephone: 08 4340 6380
Email: achieve@iinet.net.au
Director: Dr John Salmon
Hospital Affiliation: Bethesda Hospital
Services: Outpatients 1:1 consultation
Outpatient Multi-disciplinary
Inpatient consultant service
Pain Management programme
Private Pain Consultation Service

Fremantle Hospital
Classification: Tier 2 Pain Management Service PMS
Facility: Fremantle Hospital Pain Clinic
Alma Street
Fremantle WA 6160
Telephone: 08 9431 2427
Medical Director: Dr Mark Platell
Hospital Affiliation: Fremantle Hospital
Service: Outpatients 1:1 Consultation
Outpatient Multi-disciplinary
Inpatient consultation services
Pain Management programme

Royal Perth Hospital
Classification: Tier 1 Multidisciplinary Pain Clinic MPC
Facility: Royal Perth Hospital
Shenton Park Campus
6 Selby Street
Pain Medicine Centre, Level 2, Q Block
Shenton Park WA 6008
Telephone: 08 9382 7574
Medical Director: Professor S A Schay
Hospital Affiliation: Royal Perth Hospital
Services: Outpatient Multi-disciplinary
Inpatient consultative services
Outpatient 1:1 Consultation
Pain Management Programme.

Sir Charles Gairdner Hospital
Classification: Tier 1 Multidisciplinary Pain Clinic MPC
Facility: Western Australian Pain Management Centre
Sir Charles Gairdner Hospital
Hospital Avenue
Nedlands WA 6909
Telephone: 08 9346 3263
Medical Director: Dr Roger Gouke
Hospital Affiliation: Sir Charles Gairdiner Hospital
Services: Outpatients 1:1 Consultation
Outpatient Multi-disciplinary
Inpatient Consultative Services
Pain Management Programme
Private Pain Consultation Service

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One Day Pain Conference In Melbourne – 1 April 2012

March 7th, 2012 by Julia | Click to leave a comment »

If you are part of a family where pain management is a big issue you might be interested in a one day conference that is coming up in Melbourne in April.

Arthritis Victoria have arranged some excellent speakers to deliver the most up to date information about pain and how it is best managed.

Presentions

  • Dr Malcolm Hogg, the Head of Pain Services at Melbourne Health will talk about the current understanding and science behind pain in our bodies, why we experience pain, and the different levels of pain we experience.
  • Professor Michael Nicholas will talk about managing your pain and will provide practical strategies and methods on how to manage your pain.
  • The final presentation will be focusing on communicating your pain – how to communicate effectively to health professionals and others about the level of pain you are dealing with.
  • The day will conclude with a panel discussion with experts from the day, where you are able to ask questions.

Date Sunday 1 April 2012

Time 10.00am to 4.00pm

Venue Melbourne Convention Centre, Melbourne

Cost – includes lunch

  • $20 AV members
  • $30 non-members
  • $10 carers

Enquiries  telephone 03 8531 8000 or 1800 011 041 (toll free for country callers)

Registration
Program Administrator, Arthritis Victoria, PO Box 130, Caulfield South, Victoria 3162
Fax: (03) 9530 0228 Email: programs@arthritisvic.org.au

Click here for Pain Conference Informaton Sheet.

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