"CCG attitude to funding applications for Cyclone therapy."
Posted by Gilly Sayer (as ),
There is no cure for Multiple Sclerosis.
I have reached, after 30+ years of coping with this disease, the Secondary Progressive Stage, where steroids are no longer really viable due to bone softening and the good they can do is greatly reduced due to the increasing physical limitations of the disease.
My consultant at HRI suggested that some help may be obtained by my attending the Cyclone Therapy Clinic at Ottringham. The Clinic uses Electrical stimulation of the muscles to promote mobility and well being. The costs are not available on the NHS and have to be asked for through the CCG.
The patient is triarged by the CCG. and "exceptionality" of improvement compared to other sufferers is their main critieria for awarding funding. I think this is sheer lunacy as no one person suffering with MS can be, in any way, compared to any other. The overriding point in all my years of consultations with all NHS staff is the same cry: MS, they say, is totally different in each sufferer.
Staff involved in my care are at complete and almost unbelieveable variances, with one making it quite clear they did not support Cyclone, and nor did their immediate boss. Without the recommendation of this member of staff I have little chance of getting funding.
Cyclone Clinic this modus operendi is utterly confusing I have now been attending, twice weekly, for almost a year. I have been able to "stop the rot" of this dreadful disease by becoming more mentally alert; less depressed; and have achieved undoubted greater physical mobility. The cost of the treatment is approx £80 - 100 per week.
I have appealed to the CCG but their reply talks of the necessity of their comparison of my ability to physical improve and cope must be proven as an exception compared to others in my condition. This is, in my opinion, sheer lunacy.