my pain my brain204x170

My Pain My Brain
by Melanie Thernstrom

Pfizer Health reportSmall











BYDLSthe Spoon Theory

Time the secret killer

The Q&A analysis National Pain Week Conference 2016 - Westmead Hospital.

At the conference last year Professor Stephen Leeder (SL) facilitated a discussion during the afternoon of 29 July and asked the audience:

"What would work for you in designing a useful pain service?"

This is what they said:

The relationship between provider and receiver of pain management services is crucial for effective pain management.

The relationship involves being received, heard and acknowledged. Programs need to be tailored to that person as an individual. Multi-disciplinary teams with a holistic approach so that the person always feels heard and seen as an individual. It's about shared care and a change in direction from clinician being leader to being the coach. Compassionate care.

Components of program include

Exercise, medical acupuncture, meditation and mindfulness - attitude and the context of the story each person brings when they are living with chronic pain. Hub in the hospital - connected to supported services in the community - off site pain management system - incorporate the amazing new research reviewed at the conference. Given the uniqueness of Western Sydney (highesMake the new centre connected to the University. Accessible and enough parking. No slippery floors for people with walking sticks etc. Compassionate and collaborative philosophy. Align with the National Pain Strategy - Local networks of GPs and allied health providers - Additional education and training - PHN to form local networks of providers.


Having something outside of the hospital system - somewhere where you can park
Problem of pain being a 24/7 phenomenon - what to do in the middle of the night? Perhaps hospital is the only place where you can get a consistent health professional service of any sort? The audience felt that if you have pain at 3 o'clock in the morning you may not want to physically get into a car and then go to a hospital. Problem of being a long way from a hospital - 24 hr medical service that you can call outside hrs- particularly in rural areas - suggest - Skill up people who are available in out of hours time. Inadequacy of untrained staff in hospital - exemplified by the person’s story - demonstrated that hospital can create a reputation for people in pain which then goes against the patient in subsequent admissions. Person in pain would rather ring a pain buddy than expect a pain specialist to be there in the middle of the night. Audience member: We need wider spread chronic pain services where people in pain do not have to travel

Technology as an enabler

The moments when the person is not in hospital or in a consultation - which is 99% of our lives - this is where technology can support. The Chronic Pain app developed in the hackathon was co-designed with people living in pain.

Benefits of the app:

  1. App is 24/7 the opportunity for people to be able to "drop in" whatever the time of day. People's pain is not 9-5
  2. the co-design with techs allows an infusion beyond a health or welfare paradigm - it means it’s beyond capital cities
  3. Owning your data and choosing who you share it with
  4. Connection with others
  5. Regardless of where you are there are people somewhere awake that you can check in with and connect.
  6. Self management: Owning your data tells you what works for you individually
  7. Connecting to good information to help you - CPA, ACI

Person in pain: Peer to peer support is a vital tool. Massively effective in the way it deals with people's isolation, their desperation, their feeling that their experience is not validated. technology is a great enabler for that

SL: Do people at 2am want to deal with a new person? People with chronic illnesses don’t want to? Cannot do that with electronics and video?

Audience encourages support for the app - Needs further input from health professionals and funding as well.

Audience member: The person requires continuity of care from health services from hospital to community - my home - but also need community support. The app will help me do that.

Buddy system

Patient suggests that a buddy system where people can encourage and support each other. Perhaps assigned to someone - eg AA model. Peer 2 peer - set up own groups for support.

People in pain need tools to help manage their condition

Tools for self managing pain in the middle of the night

Person lives with pain says a lot of people living with chronic pain don't necessarily have the full tool kit of what's going to enable them to overcome their situation. Providing people with knowledge base and tools especially during the day- big impact on what goes on in the night is whether you're able to get to sleep and whether you're able to get to sleep is based on what type of day you've had and understanding what you need to do,


Enabling people to self-manage and know when to reach out and seek help. That's certainly what we've been looking at in the cancer pain space. People in pain have a sense of hopelessness - there is a potential to help people know that there is hope and that you can manage it
The medical model needs to be challenged and a whole person non advisory model may be appropriate with people living with chronic pain.

The landscape in Western Sydney

The NSW Health Agency for Clinical Innovation (ACI) - Statewide plan: Major focus is to bridge hospital, primary and community levels of service. Most pain clinics have physio, psychology, nursing and medical administration ACI: working towards a system of care for people in pain - need a strong hub but innovations to allow clinicians to work beyond the hospital - with primary care being supported - acknowledgement that we are a long way from providing support for people in pain in western sydney

Primary Health Network (PHN) perspective: Having a hospital based pain centre is great however people that use that centre will have their own GP, their own physiotherapist, their own specialist and it will be crucial that specialist centre interacts with GP. Potential of Health Pathways to provide support to GPs - pain pathway a priority

GP perspective: Only 10% of people with chronic pain get anywhere near a pain centre located in a hospital. So it's very much still a community kind of activity. It's too big a problem to just shove into one centre and expect that to be able to cope. we've got to have a far more community based model.

GP: you can only refer somebody to 5 allied health visits if they have a chronic condition- which is kind of a joke. Because that includes either the physio or the chiropractor or whichever other health professional/dietician they're going to see. We need to be able to change that model to give people with chronic conditions, like chronic pain, better access to allied health so that we don't have to have centralised model

Example given of chronic condition service who have rehab for 6 weeks then are connected to particular nurse coordinator There's a PERSON, a person that knows you and has your medical record and can speak to you and be your advocate - A service that has its basis in a 24/7 institution that is fundamentally community orientated is a very powerful model. Could this be provided by comprehensive pain service?

System for pain management, a system of care?

Audience: rather than a located service, what about a broad system for pain management, a system of care? System of care starts to allow you to do other innovative things. The need for continuity of care - someone that knows the patient?

Medical record shared

Shared care - input into the record - Patient wants input into the medical summary - checking in - shared care - Whenever I got to hospital or to my GP, I don't get to see what is written about me, I don't get to look at that and say yes, I agree with that, it is an accurate representation of what I am experiencing. Agreement that the record is often fractured. Patient: Sharing responsibility and agreement for the record

The red tape for the patient is overwhelming - more layers to find services through the PHN. Can we make it simpler for people to find the service they need?

Patient: Need to be able to access own medical record at this stage of history, continuity all over the country. This would alleviate having to continue justify your position especially about pain which is invisible

Pain clinician: inadequacy of chronic pain resources in hospital.

Need for a “pain Tsar” that controls and coordinates and uses the available different services.

Sharing elements of a pain system to make sure that all needs are addressed

Health Consumers NSW: acknowledgement that more services are definitely needed, better integrated services, innovation, services, Multi Disciplinary Teams, primary health care, hospital based - it's all needed. Suggestion of division of activity to complete the picture. Commission the community organisations to go the buddy system, the app, strengthen community connections. There's lots we can do ourselves and let's do what we need to do as consumers in the community to make pain management more effective. The online forum is safe, doesn’t sell anything, people are validated.


* For Western Syndey Local Health District (WSLHD) to resource a hub of appropriately skilled health professionals. This hub connects to community based services;

* For WSLHD to support the development of the app in partnership with Chronic Pain Australia;

* For there to be an ongoing focus on co-design as the basis for an emerging SYSTEM of pain care in Western Sydney;

* For these specialised health professionals to be able to deliver care in community based settings and support primary care to deliver pain management services

* For there to be a component in the training of such health professionals to provide compassionate, respectful and relationship based care

* Digital health agency (Commonwealth) - My Health record. Looking for projects where they can demonstrate effectiveness. if we really want to make the community/tertiary overlap happen, there is an opportunity for Chronic Pain Australia/ WSLHD and partners to lobby and be a part of that process Until people start to use the my health record, then we'll still have the same frustration of taking our record with us wherever we- or having to repeat it over and over again whenever you go to new places.

* Hub in the hospital - connected to supported services in the community - off site pain management system - incorporate the amazing new research reviewed at the NPW16 conference at Westmead Hospital.Make the new centre connected to the University. Accessible and enough parking. No slippery floors for people with walking sticks etc. Compassionate and collaborative philosophy. Align with the National Pain Strategy - Local networks of GPs and allied health providers - Additional education and training - PHN to form local networks of providers.

Assertion that there is education available through Faculty of Pain Medicine and PMRI - question: Does it teach compassion and empathy?

SL: Need greater recognition of the importance of managing people with chronic problems- won't achieve that without serious continuity of care between hospitals and community and general practice and carers.

Get Social this #PAINWEEK2018

Don't foget to post your lived experience of chronic pain during National Pain Week by using #PAINWEEK2018