Large swathes of the UK remain without a local or even a regional CRPS specialist treatment centre. Eleven specialist centres are recognised by the NHS in England and one in Scotland, but none in Wales or Northern Ireland.
Whilst England fares far better than the rest in terms of the overall number of specialist centres, even here there is a problem caused by the clustering of expertise into just a few regions. Of the eleven centres in England, four of them are in the North West, three in the South West and three in the Greater London area. The other centre is in Cambridge.
Although specialist centres accept referrals from further afield, huge areas of the UK find themselves in a desert in terms of access to the very best specialist treatment. In England, this includes the whole of the Midlands and the North East.
Many people with CRPS experience significant difficulties travelling. Despite that, we have seen examples of people necessarily being referred across the country for more specialist assessment, including referrals from the North East to either London or Bath. Cost is also a factor. In addition to the more general cost of travelling, many are unable to physically manage the return journey in one day and have to factor in the cost of overnight accommodation.
It is also thought that local health professionals are often more reluctant to suggest a referral to a specialist centre if travel is clearly going to be a physical and/or financial issue for the patient.
What are NHS specialist services?
According to the NHS, specialist services “support people with a range of rare and complex conditions….They deliver cutting-edge care and are a catalyst for innovation, supporting pioneering clinical practice in the NHS.”
In terms of specialist CRPS services, in addition to attracting specialist clinical staff across a range of disciplines, these centres often provide access to treatment which is difficult to source or even unavailable locally, including drug infusions and inpatient rehabilitation programmes. They are also usually among the first to have access to the most up-to-date neuromodulation devices (typically spinal cord and dorsal root ganglion stimulators) approved by NICE.
Most UK CRPS-related drug trials take place at specialist treatment centres. Whilst trials are invariably open to patients generally, not just those living in the immediate area, clearly the same travelling difficulties outlined above often apply.
Taking nothing away from more general local pain management services, offered the choice, it is easy to see why most people suffering CRPS would prefer to seek management of their treatment and rehabilitation at a specialist centre. However, with NHS resources at an all-time critical level, it is difficult to see the current situation changing any time soon.
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