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Pain Alliance Europe (PAE) workshop on Pain&Stigma

Pain Alliance Europe

How to reduce the Stigma affecting people living with Chronic Pain?

Results from the Pain Alliance Europe (PAE)’s 2019 survey show the significant problem of stigma in the area of pain. 6,069 responses from 28 European countries were collected and showed the huge effect of stigma on the lives of people with chronic pain (CP). See ‘short report’: https://pae-eu.eu/surveys.

Before the Societal Impact of Pain (SIP) Symposium in Brussels, Marian Nicholson, board member of Pain Alliance Europe, organised a pre-workshop on November 6 with several representatives of patient, healthcare and other organisations.

The objectives of this workshop were to identify the issues which lead to stigma in the area of pain and to find solutions for improving quality of life of pain patients.

The participants were divided into four groups to evaluate how to reduce stigma regarding chronic pain

  1. amongst patients,
  2. their families,
  3. the public and
  4. healthcare professionals.

To reduce stigma is quite a challenging task because chronic pain is mostly not visible to others. People with chronic pain are reluctant to ‘disclose for fear of being stigmatised’ which can be found in the full report of the PAE survey!

The working groups intensively discussed:

  • How to raise awareness?
  • How to change attitudes?
  • How to change behaviour?

Please see the attached presentation where the methodology of the workshop is described: how to identify key messages and define tactical plans to change current attitudes and behavour.

The number one suggestion across four working groups was ‘give them the facts’ (or the similar message ‘educate them’).

The suggestions included:

  • 1 in 5 people suffer chronic pain - get that message out. 
  • Raise awareness amongst the public. 
  • Better education for medical people in dealing with CP. 
  • Teach patients how to talk about this with their families. Perhaps with mediation or therapy
  • Get family members and understanding friends to speak up whenever they hear negative comments about a person with CP. 

Conclusion:

Stigma, no matter what aspect of people it is referring to (body size, race, skin colour, religion, or pain) is part of life.

To live with it, one has to accept that it is always based on ignorance and fear of difference. You know better and have the facts to explain to a loved one.

On a society-wide basis, the solution is ‘educate people about it’. The five points above all come under the umbrella of ‘give people knowledge to eradicate stigma’. 

We hope that this interactive workshop will lead to ideas for further proposals to apply for the Brain Mind and Pain (BMP) patient-centered innovation grant "Stop Stigma!" which is still possible until 31 December 2019.

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