DMEK experience

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Re: DMEK experience

Postby Green » Fri 30 Sep 2022 6:44 am

I live alone, family in different city, all friends don't have cars and none live in my borough anymore (emigration, moved to other side of country, died)

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Re: DMEK experience

Postby space_cadet » Fri 30 Sep 2022 7:57 am

does Moorfields have a befriending service? I found the one in Leeds really helpful a good few years ago now
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: DMEK experience

Postby Green » Fri 30 Sep 2022 8:10 am

I don't need that, it's a lack of transport

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Re: DMEK experience

Postby space_cadet » Fri 30 Sep 2022 8:18 am

if I had to get a bus here itd be a bus to town n then a bus out again or a 25 min walk with my cane from where the 1st bus stops but the buses keep knocking here so far from reliable
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: DMEK experience

Postby Green » Fri 30 Sep 2022 8:42 am

Yes its a problem in many parts of the country with both public transport and cabs, there's a shortage of drivers.
Hospital transport is also being rationed, my dad had orthopaedic surgery at a private hosp an hours drive away (but done under the NHS), and they wanted to charge £40 each way. The only exception was if you had a Blue Badge which he does, but if you don't and need to do several trips its very costly.

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Re: DMEK experience

Postby Anne Klepacz » Fri 30 Sep 2022 8:44 am

Have you tried talking to the ECLO at Moorfields as to whether anything else is available? I know some hospitals used to have volunteer drivers and also some councils. Not sure if these schemes exist any more but worth asking.

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Re: DMEK experience

Postby Green » Fri 30 Sep 2022 8:47 am

Thanks Anne Xx

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Re: DMEK experience

Postby space_cadet » Fri 30 Sep 2022 9:30 am

CVS also have or at least used to have voluntary drivers. as did I forget its name but a voluntary thing based in Camden,
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: DMEK experience

Postby Green » Mon 03 Oct 2022 11:09 am

Nothing seems to exist with councils and vol orgs

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Re: DMEK experience

Postby Green » Tue 04 Oct 2022 3:11 pm

Council sensory impairment team told me to "advertise for a driver".
Red Cross told me to ring Citizens Advice and Royal Voluntary Services (who have no transport services/volunteer drivers in my area). RNIB said no ECLO in my area, suggested GP for hosp transport (er...get a phone call in 3 weeks time & what's the betting I won't fit criteria), or get Transport for London's "mentoring scheme" to use the tube.
It's sheer luck a friend in Scotland is in London and is bringing me a cab from the station in the morning.
The last 5 days have been hell, the pain is horrific, eye shut other than for 30 drops.

Is Hylo-Forte safe for RGPs? My "good" eye is getting dry.


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