Why is awareness of CRPS so low in the UK?

Complex Regional Pain Syndrome (CRPS) is a poorly understood condition that usually occurs in the limbs. Planned surgery, broken or fractured bones, and even sprain can trigger CRPS. Sometimes there is no apparent cause.

Symptoms include burning and stabbing pain and swelling of the affected area, which may lead to the loss of flexibility and mobility. Approximately 16,000 people in the UK are living with it. According to Burning Nights CRPS charity, one in 3,800 people are diagnosed with CRPS every year in the UK.

According to CRPS Compensation Solicitors, 62% of the population had never heard of CRPS, 29% not sure whether they had heard of it, and only 9% had heard of it before.

This article is going to explore possible reasons for low awareness of CRPS in the UK. We have attempted to find the answer by looking at the literature on CRPS and the experiences of people living with this condition. This study was especially helpful with its in-depth interview findings – the majority of the study’s participants describing their day-to-day experiences and barriers were from the UK.

CRPS Is Often Misdiagnosed

One of the biggest issues is that it takes a long time to get the correct diagnosis of CRPS and patients simply don’t know they are living with CRPS and therefore are not able to spread awareness. For instance, participants of this study shared that the minimum time it took to get diagnosed was 3 months and the maximum was 9 years. The average time to receive a formal diagnosis among all participants was 2.65 years.

Not many health professionals are aware of CRPS, either – that is why it is hard to get a prompt diagnosis. If doctors are not aware of this condition, they can’t educate their patients, let alone the general public.

It Takes A Lot Of Time To Get The Condition Under Control

Once patients get their diagnosis, a whole new battle begins. According to the above-mentioned study, people living with CRPS cannot always access needed support and when they do,  it costs them a fortune.

Patients face problems such as a shortage of CRPS-educated health professionals and some still call this condition RSD (Reflex Sympathetic Dystrophy); finding the knowledgeable doctors is a challenge and even with CRPS diagnosis, some don’t get correct advice and information;

Sufferers Are Hiding Behind A Mask

Some CRPS sufferers don’t always disclose their pain levels in order to protect their loved ones; some convince themselves they feel better than they do; others just don’t want to stand out in the crowd.

The above-mentioned behaviours don’t help raise CRPS awareness, because people around those who suffer, may not have the true picture of what’s happening and how the sufferers are feeling.

Where To Find Information and Get Help?

Once participants feel that their condition is under control, they could start raising awareness. Many of them form and run charities or volunteer with CRPS charities.

CRPS UK is one of the registered charities supporting people with CRPS. They provide people with CRPS opportunities to connect and talk to people with the same diagnosis. In addition to raising awareness,  they offer education, produce literature, and help with research.

Burning Nights CRPS is another charity that improves the quality of lives of people with CRPS. They are dedicated to raising awareness amongst the public, health and legal professionals.

CRPS Awareness Month

CRPS communities around the world get together to raise awareness about this condition throughout November every year. November is the CRPS awareness month. Colour The World Orange Day is a special day dedicated to creating awareness for CRSP and educating the wider population. It always takes place on the first Monday in November and one of the things people do is wear orange.

References

https://www.sciencedirect.com/science/article/pii/S1526590021002029

https://www.bath.ac.uk/announcements/study-reveals-new-insights-into-rare-chronic-pain-condition/

https://my.clevelandclinic.org/health/diseases/12085-complex-regional-pain-syndrom

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