Lulu, Has he got your eyes under control? I wonder Moorfields are doing about this autologous serum problem. Or whether there's co-pay arrangements with the National Blood Transfusion Service. I'd forgotten that Sazy123 went to Vissum Eye Institute in Alicante, Spain, for autologous serum drops. Just a few random thoughts.
Do you think you might need to come off the computer for a while, though, and nurse your eyes back to bearable with this ophth. I've realised that the most important thing is to entirely prioritise on our immediate healing and maintenance, and leave the stressing for when we feel better. Is there anything else that would help meanwhile, Sjogrens drugs-wise?
This is a period of change for docs and things will shake up then settle down. Everyone, inc docs, is upset. They don't seem to know what's expected plus getting daft and confusing instructions from on high. Soon the consultants will put their feet down, sort their clinics out, and start communicating with each other. Also some new providers will spring up, hopefully communicating with the hospitals, so we will get used to more flexibility, esp on eyes, but a bit more confusion about who's paying for what for a while.
Just to clarify, we've got those referrals now from random other consultants and one of the GP partners has changed her mind... And they are across PCT. Eg the GPs originally said they only had one neuro they were allowed to refer to inside the PCT and he was a bit rubbish so they wouldn't bother. Now she is supposed to be in regional paediatric tertiary referral outside the PCT monitored for brain surgery for pressure in the head started when she was on low-dose oral tetracycline with the national but she'd been discharged. The national then refused internal neuro referral saying neuro should be local or regional.
I do wonder whether they always read and understand the notes... Now finally they're referring out of PCT but autoimmune/rheumatology referral was eventually from the neuro consultant in the regional tertiary hospital when we finally got to see him (also refused by the national). Shows how confused everyone is just now. If someone is not up to the job locally, there is an obligation to refer round them - call it 'centres of specialisation', if you will. If service is closed or not available, we're supposed to go there, ie out of PCT.
If anyone says 'it's political', it's straight to the PCT Patient Liaison Service. This is what I did and they were keen to address the practicalities. Martial arts training might've been useful here for patience and focus...
This is why the forums of the national rare disorder networks are so invaluable - are the British Sjogrens Foundation campaigning on this? I just got some publicity 'stress brains' from the Intracranial Hypertension Network UK to give to ours, including some of the neuros. Amusing yet a pertinent reminder to google before the patient comes in.
Hope you can get more comfortable - do you have any local support groups that you like for networking? Can't be the only one in the county. We need to all keep safe while they're faffing about with the NHS funding until things settle down again and we all know what's what.
The above nonsense is what Lulu is dealing with needing autologous serum on the NHS for Sjogrens, or eg paying in western Europe, Netherlands, Germany - does anyone have experience to help her?
Maybe one question we're now asking the docs is - if there isn't enough money NHS, how do we co-pay approved suppliers like the National Blood Transfusion laboratories for our specialist drugs? I think there might be precedents in heart and cancer meds.
Last edited by littlemermaid; 14-Jul-2012 at 06:50.
Paediatric ocular rosacea ~ primum non nocere