Hi all I have been asked to share my sight loss story today in parliament and am also focusing on
1) communication between difdeeent health care professionals ( diabetes and opthalmologists)
2) registration and time wasted because only a consultant could do it in my hospital
3) getting hold of new eye drugs in time critical cases
4) the positive impact of the Macular eye unit mobile bus in my area.
Should be fun even though perhaps a little scary
Good luck Tallyho,
I am sure it will all go well.
Don't pull any punches!
Best wishes
Macular Society
Yes, Good Luck, tallyho!!
Let us know how it went and what and how much was discussed. I would be very interested.
Maybe we shall see you on Question Time sometime?
Well done, hope it goes well. A good positive action.
Best of luck today. You are very brave. Thank you for speaking up for those of us who cant.
Best of luck to you. Please keep us posted as to how you are doing.
This is progress! Hope you can say how important it is 70 yr. old and upwards have their retinas photographed.. I'll be rooting for you!! Look forward to hearing from you.
Good luck !!
Wow tallyho, go for it!
Well done you, on behalf of everyone in the country. It's about time govnmt got told exactly how things are in our world.
Sending a big pat on the back xxx
That is fascinating! Well done for getting involved.
I suffered from eye cancer which caused my macular oedema problems. I am a patient rep for the charity Ocumel UK but we knew nothing of this initiative.
Our major problem is that we are such a tiny group, just 6persons per million worldwide, only half of whom survive beyond 5yrs, and so we rarely figure in the larger scheme of assessment of medical care. However, whilst the primary tumour is usually treated successfully it is the secondaries (metastases) and collateral damage to the eye which often are ignored or badly diagnosed and which we fight to secure treatment for on a consistent basis across the UK.
The situation in Scotland is even worse where essential MRI scan post treatment of the eye are point blank refused until it is too late for them to be of benefit. OMUK has just petitioned the Scottish Parliament seeking to secure a change to the outdated and life threatening practices there.
Hi Rennatk
I remember your post from a good while back and am glad to hear that you are still going strong and are still trying to fight your corner. I presume you have got your local MP involved to support your cause. There may only be comparatively few patients with this particular disease but we are all equally important. In fact, I think your cause is even more pressing. Keep it up. And best wishes.
Ayayay80
Thank you for your good wishes. My major concerns are for the young parents who develop this condition, whilst they struggle to understand it and its implications it is progressing rapidly and they lose their battle leaving young families. Far too many this year alone.
Fortunately, I do have a good MP, there are not many about, but it is a constant fight generally to keep up the pressure and awareness. Over the last few months we have noticed a distinct backing - off of some key services and a slide back towards old, outdated practices.
That is so sad, rennatk. I know the NHS is struggling. We notice the cuts everywhere, but they should not spare on costs when it comes to saving lives. I know you will go on fighting for what is right. I wish you well.
Rennatk, so sad to hear of your struggles on behalf of others but good on you for doing it x . Glad you are doing ok x
It might not help but have you contacted the Royal College of Opthalmologists? (Maybe there's a Scottish arm). They set out treatment guidelines etc and might be a lever you can use with hospital management. Good luck x
Thanks, the RCO is an good idea. I will check to find if we have contacted them.
Best wishes - go for it!
Unusual, Painful Experience
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