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Hi just joined, care and keratoconus? - Carers UK Forum

Hi just joined, care and keratoconus?

Tell us a bit about yourself here.
I care for my son,21, who was diagnosed with Keratoconus four years ago.
He has lost vision in right eye and partial sight in other due to hydrops.
I look after him as best I can but know little of coping with visual impairment.
Keratoconus is a disease which doesn't seem to fit government criteria for any help
or support as theoretically it can be improved. My son cannot access help with education
or work as he doesn't qualify for CVI even though his vision continues to deteriorate.
I am trying to understand how I am expected to 'care' with no practical support for him
or myself and I am worried about his long term future.
Does anyone have a similar issue? Any input would be welcome. Image
my husband is registered blind now(different health reasons than your son).He has no sight at all in the left eye,and a small amount of sight in the right.
Visually Impaired people of all ages do not seem to get much input from anywhere as far as I can see.
Is your son registered blind or partially sighted,as that may help him to get access to other support services.
I would get in touch with the RNIB,as it sounds to me as though your son should be getting more help than he is.(my husband is now 56,and until two years ago had a guide dog,but decided not to put in for another one as his health isn't good enough to give the dog enough exercise each day).
One young man in our town has gone away to a college( I think it is for people who have sight problems),and is doing really well.I don't know what support he receives financially or with social needs though.
Have you had a Carers assessment as you are entitled to one?
I will come back later if I think of anything else that might help you and your son.
Hi and welcome Image
Hi rosie
Lots of ophthalmologists dont think to register children blind/partially sighted as they dont think that it will make much difference to them. In your case though I think it will help as you can use this as a basis for support, so ask your consultant if he can do this. Does your hospital have a sight care adviser? Some eye clinics have them and they are usually very knowledgeable about what help is available.
Ive also included a couple of charities that might be of use.
There might be a local charity too, in my area there is 4sight, but they only cover the south coast.
Hope you get on OK xx
thank you for your welcome....much appreciated. Image
My son is unable to be registered as partially sighted as his consultant says' he doesn't
fit criteria' as it is possible sometime in the future a corneal transplant may give him enough sight not to qualify for CVI. His consultant is not supportive and refuses to certify him. The low vision clinic, his social worker and GP have contacted consultant outlining the case for certification but to no avail. The consultant has discharged my son so I am in the process of getting a second opinion.
He therefore cannot 'prove' that he is visually impaired so he is excluded from help from
the normal organisations.
I know it doesn't make sense but after 4 years of trying to understand myself, I'm still confused.
I have contacted the RNIB and have also been to visit their college at Hereford. It is a marvellous place and they would like my son to become a student. However he would need
funding from the local council and they would require evidence that his vision is poor enough to warrant the cost. It would be difficult to prove without CVI and no medical support.RNIB tell me that Keratoconus is not considered a condition that they feel needs
registering as theoretically it can possibly be helped at somepoint in the future.I might add that my son has a particularly aggressive form of Keratoconus which has led to
his rapid loss of vision so he is outside normal parameters for this disease. As it is not common there are no local groups he can join but he does travel to Action for Blind People events when possible.
I have had a care assessment/carers assessment done and the council have awarded him some funding as they consider he has critical and substantial needs which will increase as his vision deteriorates. This has helped us both as it is the only assistance we have had in 4 years from anyone. The irony is that the council have a Sensory Impairment Team dedicated to helping visually impaired people like my son,unfortunately he doesn't qualify for that help because he is not registered!
The help is out there ...but because of the nature of my sons disease he appears not to fit anybodys criteria... Image
Rosie,my husband has had a successful corneal transplant in 1994,thankfully as that is the eye which still has a small amount of sight.
Rosie, the way you and your son are being treated is a disgrace.He is 21, he needs to be able to do some forward planning for his needs. Registration of partial sightedness or blindness needs to be done now.(After all, I could wake up tomorrow morning and there be a sudden cure for blindness due to diabetic retinopathy(which my husband has) and it be cheap enough to give everyone the cure immediately.Circumstances do change, but it is now your son needs the support.
I feel so angry on your behalf. Ask the RNIB to talk you through the complaints process with your local council.
I am sure there will be more people through here with better advice than me, overnight.
Good luck. x
it might also be worth contacting the Guide Dogs association. They have got advice teams for people with visual impairment, not just people who are getting a guide dog.
hi and welcome to forum
I cant believe all of this Rosie, I think you must have a particularly bolshie consultant. You said you are going for a second opinion - this sounds like a very good idea. He needs help at the moment when his sight is poor, not waiting for an indefinite time until help may theoretically be available Image
Thanks for your opinions and support.... it confirms what I have been feeling about my sons situation and the hospitals attitude, but sometimes you need to hear others say it.
I cannot understand the reasoning for not registering him as it prevents him from accessing
much needed help. What I found disturbing that we were lectured by the consultant about 'families needing to care for their own and not to expect the state to do it' and then he declared 'that people want to be registered to get all those benefits'. I went to the hospital for a medical opinion not a political one! hence my request for a second opinion.
I feel ideaology is getting in the way and the patients needs are not being addressed.
I have contacted Healthwatch and will be sharing our experience.
However I would,just for now,like a proper medical assessment of my son and some support to enable him to plan a future.....lets hope the second opinion is more helpful!