post corneal transplant What now?

[aberlady]

What now?
My son has had his corneal transplant and thankfully now has some vision in his right eye. The op was carried out sooner than planned as his cornea split and had to be glued. The glue did not hold and the cornea was "melting", hence the op. The immunosuppressants seem to be doing their job and his skin has improved as a result.
My query is, What happens now? He will not be able to return to his work for some considerable time, if ever. His work environment is an unsuitable environment for a someone with severe eye problems. As long as he is getting statuatory sick pay what other options are available? Are their any benefits he can apply for? £60 a week does not cover mortgage repayments, council tax and heating bills. Are their retraining schemes, if a return to work is not possible? He has approached his mortgage supplier and council offices in the hope of reducing his outgoings. The DSS suggested Disibility living allowance which is not means tested is his only option. Is this correct?
We are at a loss to know what to do next. Sent from hospital with a follow up appoinment in 2 weeks and a letter to his doctor. No help or advice as to the future.
Any pointers or experiences of others in a similar situation would be most welome.

[Anne Klepacz]

It sounds as though your son (and you) have had a pretty scary time. But it's encouraging that he's already noticing a difference in vision. As for the future, it's obviously very early yet to tell what his sight will be post graft. In the meantime, he should certainly try for DLA. It would also be worth asking at his next hospital appt whether he is eligible to be registered partially sighted at the moment. That would make the DLA application easier. He really needs expert help round the financial and benefits minefield. RNIB Scotland would have advisers who could help with this and with the employment side too. You don't say what sort of work environment he is in, but employers are obliged to make 'reasonable adjustments' under the Disability Discrimation Act for employees with disabilities. If that really isn't possible with his current employers, RNIB would be able to advise him about retraining possibilities.
Wishing your son all the very best for good healing and a good end result.
Anne

[longhoc]

Hi aberlady

Just to echo Anne's comment re Disability Living Allowance (DLA). I applied for and was deemed eligible for DLA (this was the case prior to my graft, it was allocated for a limited time i.e. with a "sunset clause" until the date of my graft when I had to reapply which thankfully again resulted in my allowance continuing). It is pretty much the only benefit you're eligible for while in employment (or receiving sick pay from your employer). JSA or ESA are definitely no-nos.

So I can give you some hints and tips about the DLA application process if you like. The main one is that your application is strengthened no end by having one of the clinicians who knows your son to be willing to respond to the DWP's enquiry which they will make once you've submitted your application form. This may be the consultant at the hospital or your son's GP. But if it is the GP, make sure that the GP is sent a report from the consultant or at least a file note is visible to her/him covering the current condition and likely prognosis. Obviously if your GP is fully versed with your son's progress, this isn't quite so important, but in my experience once you're out of the hands of Primary Care, communication between the hospital/PCT and the GP isn't necessarily that verbose. Definitely worth discussing the matter with the consultant and/or the GP to see if either of these parties would be happy to be listed as the "person who knows you best".

That all said, again, as Anne mentioned, getting your son back into the workplace is the best solution to this and the employer is obligated to make reasonable adjustments. This could be a change of duties for a time, perhaps to a more appropriate environment or less visually demanding tasks for instance. It's a good idea to speak to the employer as soon as you can. It's always a bit intimidating, but they may be only too happy to help.

It may also be worth popping into your local Citizens Advice Bureau (CAB) to have a comprehensive review of what your son may be entitled to. It's also possible that you might be eligible for some sort of carers allowance in your own right. Not something that I know anything about unfortunately, hence my suggestion to go to the CAB. If you really hate the thought of that, there's another forum where you can post asking for advice (link: http://boards.fool.co.uk/dealing-with-debt-50079.aspx -- ask if a lady with the nametag manzanilla can look at your situation). It's not quite as good as us here at the UK Keratoconus Self-Help and Support Association... but then it wouldn't be would it..?



Best wishes

Chris

[aberlady]

Thank you Anne and Chris for your responses.
We have the DLA form and it seems a rather daunting prospect but one which he will undertake. Applications to have mortgage & council tax breaks are in the process of being decided. It would appear everything is now done on-line or by telephone and involves ticking boxes. A face to face encounter and a more personalised approach would be more satisfactory especially as eye problems are so diverse and healing outcomes vary enormously. Maybe I'm old fashioned and need to move with the times but surely a one to one, all-in type of meeting prior to or immediately after discharge would reduce the stress of patients who have suddenly had their world turned upside down?