What matters most for chronic pain patients?
by Joop van Griensven, PAE President
There are of course multiple things that matter to chronic pain patients, but if I would have to make a choice I would say the heaviest is losing their independence in society. In other words, their economic dependency, as they depend on others to survive financially – such as partners, social security or other government institutions. This creates a feeling of just being another number and not an individual with normal human feelings, expectations, or wishes.
These feelings have a very negative effect on patients’ wellbeing. Wellbeing is, according to the WHO, the basis for good health. These feelings are a big hurdle to overcome and it is necessary to start with therapy options that could make a difference. Therapy options which could lead to less dependence on near and dear ones and on society. See here the reasons why chronic pain patients are trapped in a vicious circle.
Chronic pain patients are of course not the only ones who face these challenges. Almost all chronic patients experience them in their lifetimes. How big are these problems? What is the economic loss for individual chronic pain patients? And what would that mean to society and to other stakeholders?
Pain Alliance Europe performed a survey to find an answer to these questions, on the economic and work-related problems of chronic pain patients.
The 2018 iteration of the Pain Alliance Europe’s survey, “Pain and Your Work Life” was sent out across Europe and we have received enough answers in 12 different EU languages, of which we present herein the outcome for a couple of questions who show by themselves the gravity of the situation. Overall, over 4400 people responded to this survey – and they come from all different diseases areas.
This questionnaire was distributed through the member network of the Pain Alliance Europe across different countries. The invitation to participate in the survey was sent to patients known in the registries of national patient organisations and charities
The effect of pain on a person’ work life is still one of the hardest to deal with. Because it doesn’t only affect the patient directly – but also his near and dear ones: partner, children, extended family. Here is what an excerpt of the survey brings to the surface:
Being prevented from working:
50% of the respondents mentioned that their chronic pain prevents them from working. Overall there were more women than men and on average women were younger when they had to stop working. Employers made no adjustments to keep people at work in 40% of cases. If adjustments were made it was mostly because patients asked for it – and in the case of 20% of respondents, the adjustment was made on legal basis.
This has been discussed many times during the various meetings we held in the EU Parliament. It has been proven to make a huge return on any expenses incurred. So the figures shown here are a very disappointing result. 67% of the respondents didn’t receive occupational rehabilitation at all. Only 20 % received any. And of this 20 %, some had to pay for it themselves, some employers paid for, others it was paid by the government and some got it in other ways.
Loss of income
The survey shows that on average throughout Europe 44 % of people with chronic pain have had a drop in income of 50 % or more. For one in ten, that drop was down to less than 10% of previous income.
The collected data is currently being analysed by experts from The Erasmus School of Health Policy & Management of Erasmus University Rotterdam in the Netherlands and will be available soon.