Nhs appointment .. What do you think?

[Angelic_eyes]

So after waiting for nearly 6 months for an nhs appointment after i missed the first which too came after 6 months, i finally went to see what they had to say. The moment i said i have had cross linking done and had to see someone privately that is not the one connected to the hospital he went all angry mode and straight off said to me why are you here and you dont need to see everyone. Alot of other things were said by him but i wont go into that now. I explained i had waited over a year to see someone from nhs and also explained that even though i had cross linking on my left eye i needed a second opinion for my right eye and wanted to hear from an nhs doctor of his opinion as a second opinion. To that he replied its not a second opinion if you have already had treatment done and the nhs wont touch the right eye now and he couldnt tell me if it had progressed in the eye even though i said to him he can check the prescription with my local optition and compare it over the year. My question is has anyone had an experence like this where the nhs doc will refuse to help you even as a second opinion he said i wont need a follow up with him now but i thought keratoconus patients need to have check ups after a certain amount of time ie 6 months or yearly. Also he said i should get my lenses from the the people who im seeing for crosslinking but i explained it costs too much privately i cant afford them as well as the treatment am i wrong in wanting to get the lenses from nhs. I do have an nhs appointment to see lens specialist the doc i saw said i shouldnt mention i had cross linking done i can only assume he said this coz he thinks he Might say the same. i would appreciate your help.

[Andrew MacLean]

I think you were treated very badly indeed

The NHS isn't free; it provides a service that is free at the point of use. But we pay for it in our taxes

[andytraill]

That sounds horrible! Also if you need specialist lenses the NHS should provide them. I'd actually consider making a complaint about that (I'm not a complainer but really). If he's providing a similar level of "care" to people then you'd be doing them a service flagging it up.

[Angelic_eyes]

thanks for your replies.. At the time i was very upset when i got home and i wish i had complained straight away.. Its coming up to nearly 3 weeks since that appointment and i still think about it but it might be too late for me to complain as it will just be my word against his..but i don't want him to think he can just treat people like this especially making them feel they have done wrong to have private treatment or to seek a second opinion. Its not as if i had cosmetic surgery or anything, its my eyesight i'm trying to save from deteriorating, something the nhs couldn't help me with. Also about him saying to me not to mention i had cross linking to the lens specialist, i asked my private ophthalmologist and he said that would be very dangerous as i will need soft lenses for the first year and he might prescribe me with the hard ones. Do you think i've left it too late to complain?

[sophietw]

That's really outrageous. SO unsympathetic! Why on earth should it matter that you went privately for some of your treatment? The Consultant should have applauded you for being proactive and for saving the NHS hundreds of pounds, as you've saved them a job. Thankfully this is not the mentality of most of the Consultants I know, it seems you were very unlucky and saw someone who's either a horrible person, or maybe he just got out the wrong side of the bed! Most NHS doctors will usually be happy to work alongside a private doctor in order to give the patient the best possible treatment, which is at the end of the day, the whole point.

It might be worth speaking to your GP about your experience and ask for a referral to either a different consultant, or maybe a different hospital. You should NOT be expected to get contact lenses privately, just because you had crosslinking done privately. That is not cool to tell you that. You are perfectly entitled to the same treatment as anyone else. Also no harm in send a firmly worded letter to the complaints department of the hospital you went to, naming the consultant you saw. He will have made notes in your file to the same effect as what he told you verbally, which will back up your complaint.

Good luck with it all. Don't despair. It's good that you have an NHS appointment to see a contact lens fitter. Definitely mention that you have had crosslinking, it's relevant to your treatment and any normal Optom should have no issue with where you had it done. Incidentally I fit people who've had crosslinking all the time, and have never heard that you should only have soft lenses. I fit RGP, hybrid and scleral lenses regularly on these patients with the blessing of their surgeon, and will no ill-effects.

[Ali Akay]

To add to Sophie's comments there definitely appears to be a breakdown of communication here. The standard method of monitoring the progression and deciding on whether your KC is progressing or not is by repeating corneal topography, typically every 6 months. Hence, it'd have been very difficult for this chap to tell you if your right eye had progressed or not as he had not seen you before! Looking at your optician's prescription wouldn't give sufficient information. However there was no point in trying to make you feel guilty about having crosslinking done to your left eye while waiting for a year for your NHS appointment. Its certainly not true to suggest that NHS wouldn't touch your right eye now! I work in 3 different hospitals and regularly see patients who had crosslinking done privately.

I have to say, in my experience, the whole crosslinking "industry" needs to do more to work closer with the patients' NHS consultants. We sometimes see patients we've known for a long time who turn up for an appointment and announce that they just had crosslinking. There seems to be no attempt by some surgeons to contact the patients' NHS consultant to perhaps request copies of past topographies to see if there is any evidence of progression. They seem quite happy to carry out the procedure and often do not even send a report afterwards to the NHS consultant. There often doesn't appear to be any provision for follow-up either. I've had one patient who had shown no evidence of progression over a 20 year period, then saw a Harley St. surgeon who advised him to have crosslinking without ascertaining if there had been any progression or not. You have to draw your own conclusions from that...

It does sound like the chap you saw was out of order based on your post, may be he was having a bad day and there has probably been a breakdown of communication as well. Your best bet might be seeing your GP and request referral to another hospital if there is a reputable one in the locality rather than complaining, etc

[longhoc]

Just to add that my own experience of transitioning back into the NHS after private treatment also elicited a not entirely joined up response (and that is putting it politely).

The clinical staff were fine -- once I got to actually have an appointment, that is. But trying to get back into a position where my routine checks could resume in the NHS eye unit I attend at 18 months post-graft (during which time the private consultant provided all necessary aftercare including over half a dozen check-ups and removal of all stiches -- saving the NHS many thousands of pounds in the process) left me with a distinct impression that I'd brought some terrible situation on myself. "Oh, you've had private treatment ?" ask the member of staff handing appointments. "Well, you can't come back here for checkups, you need to go to your private consultant". No, I advised, the treatment has finished, everything that could reasonably be expected to be done under the private practice arrangement for the fee I'd paid had been concluded, now I need to resume normal monitoring. "No, we can't use this appointment you've been given for that purpose, you've had private treatment..."

On and on it went. But I wasn't going to be allowed to have my routine check up and that, as far as the administrative member of staff was concerned, was that. I'm not normally one to feel really aggrieved, but like you Angelic_eyes, when you're on the receiving end of that kind of response -- like you're a naughty child who has bunked out of school and now the teacher is very very cross with you -- is demeaning and distressing. I ended up going to A&E for a check up just to ensure there wasn't anything seriously amiss with my grafted eye. Now I can fully comprehend why A&E gets clogged up with non-urgent cases. The clinicians there must be despairing.

As you say Ali, going back to Primary Care sorted it out (although it took several months to get an appointment, exactly the same appointment I'd been refused admission to when I'd gone originally and 'fessed up to having private treatment).

If the future is indeed "blended" provision of in-house NHS services and contracted out services paid for out of an NHS budget (can't say I'm exactly thrilled by this prospect, but there we go), the NHS is going to have to get a whole lot slicker at dealing with patients for whom there isn't a nice, clean boundary between receiving "private" and "NHS" care.

Angelic_eyes, yep, definitely go back to your GP and start again. My sympathies to you for having to endure this faffing about, but your eye care is more important that pleasing "the system".

Cheers

Chris