Make CRPS a properly recognised condition amongst health professionals in the UK & the NHS
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CRPS which is Complex Regional Pain Syndrome, is a rare chronic pain condition suffered by those of all ages and has been recognised by medicine under various names for a long while.
Despite this it is still not recognised by many health practitioners (doctors, nurses, surgeons, physiotherapists, occupational therapists etc) in the UK. This leads to unnecessary suffering, development of life changing symptoms and mental health problems.
CRPS is known by some as the "suicide disease" as it is the most painful condition known to medicine and can make life unbearable for the sufferer.
In my case, I went from being an active 16 year old girl who loved kayaking, to one who was wheelchair bound and in and out of hospital just before I turned 19. Just from a minor knee sprain. From this I have had the condition spread to affect both my legs and my left wrist and hand, I developed anxiety, had a mental health scare, skin breakdown, loss of muscle function and dystonia which I have had to overcome multiple times, relearn to walk multiple times, accept that my medical team are my new best friends, that physiotherapy and pain management will be a life long commitment and essentially learn a new way of life with chronic pain and I am only 21.
My story on Channel 5 National News CRPS Channel 5 News at 5pm
Yet on every occasion I have been admitted to hospital or visited a GP that wasn't the one I normally see, or been to hospital for something else. None of the doctors or nurses had a clue what CRPS was, with some going as far to say that it was all in my head and psychological. Which has been disproved as stated on the NHS website. Doctors on these occasions will ignore my requests to not grab or touch my legs or the fact I cannot move them because of pain and I have been accused of self harm due to the skin breakdown. When my CRPS spread to my hand and fingers, I went to get it checked on request by my normal GP, despite a splint being requested urgently the splint making department said I would have to wait two days to even be fitted with one let alone have access to hand therapy. If that physio had more awareness and understanding of CRPS and its complications she would have understood the urgency of the situation.
This is only a small insight into the lack of understanding of CRPS in the UK, other problems include disjointed services across the UK in the NHS, extremely long waiting lists for pain clinics, a lottery over funding and treatment and not many health care practitioners being able to recognise and give primary treatment of or help manage CRPS.
The first three things the government need to change is:
- Increase the education of health practitioners on chronic pain especially neuropathic pain conditions, so that they can recognise and begin treatment earlier, and also understand patients and help them rather than question / dismiss them or tell them its psychological as above.
- Create a tick box on NHS systems that means that all CRPS patients can be logged and therefore counted. Which would enable the specialist CRPS centres and pain centres to apply and access more funding. Leading to better research and treatments.
- Make CRPS a recognised chronic condition with management services and treatment pathway to match, rather than saying there is nothing else we can do and leaving people stranded.
If these three basic points are achieved the life of CRPS sufferers and their family and friends plus future sufferers will be made a lot less stressful. Potential secondary conditions such as mental health conditions may be avoided in their severity. The more people who are treated efficiently and effectively from early on after recognition should lead to a greater number of people achieving remission plus those who have long term management and support will enable them to lead better lives and potentially return to work or education. If the health system recognises CRPS in these ways then the care system including PIP (personal independence payments) and similar are more likely to also recognise the severity of the condition and provide more help. Finally if CRPS is recognised and management services are provided to match, then sufferers should be eligible for free NHS prescriptions as management of long term conditions is extremely expensive for the sufferer and their families.
Even though I personally have only experienced a few problems with health practitioners compared to some sufferers, at times it has been very demoralising and unnerving for me and my family. Currently I don't see a health system that can continue managing CRPS the way it does and it is letting down numerous sufferers as it stands. I have friends with CRPS who are housebound, had their limbs amputated, are bed bound, suffered from sepsis the list is endless. They have all come across the lack of awareness and understanding amongst medical professionals and like me find it upsetting to say the least.
As media and public awareness of the continues to grow more and more people may think and self diagnose CRPS but unless the medical practitioners on the front line understand and recognise CRPS there is not much that will happen. The longer people are left with CRPS the tendency is for it to worsen at various rates, leaving more demand on the health service, if there was more recognition amongst medical professionals and better general management strategies this may not happen and therefore reduce the strain long term on the NHS for example.
Even if the government makes a few simple changes to the way health practitioners are trained and treat CRPS patients it would make a massive difference to myself and the community who deserve so much better!
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