I'd be interested if there are any other forum members currently suffering from the fall out at the Q.E. hospital outpatient Ophthalmology department in Birmingham.
The basis for that as far as I can work out is a dept reorganisation with a new head of dept.
Unfortunately what this means is there is no functioning clinic for Keracotonus patients at the Q.E.
I only found all this out because I lost my RGP around 6-8 weeks ago and tried to get a replacement to no avail.
I went to see the new head of department was very apologetic and clearly snowed under as there is just her working on this.
I have also requested a transfer to BMEC but she says that could take over 6 months.
It certainly doesn't help myself and the others in the same boat who are unable to get replacement contacts or appointments with no date for the service to be up and running.
Is anyone else currently in the same position as a result of this ongoing meltdown of Kera services at the Q.E?
if so please reply on this thread, the more of us the more we can push for some action.
I was diagnosed with keratoconus at the QE back in April 2016, and was referred to a contact lens appointment in July - as my vision cannot be corrected with glasses. This became October, which became January and so on... I was eventually seen back in June and given an appointment for contact lenses, which did not fit, so was given another one for September, when they had received the new lenses, which got cancelled on the day of the appointment.
Now, my father and I have been complaining through PALS and making little progress, seemingly passed on to the next new staff member they recruit.
I'm not really sure what to do next, as it seems that PALS aren't going to help us. I am now planning on progressing with private treatment, as I have previously been in touch with The Contact Lens Practice. It's going to cost a lot, but it seems my options are that, or moving out of the city!
Like yourself I first got an inkling something was wrong when having to cancel my appointment in summer, the next one they offered me was January 2018.
It is wrong when someone like yourself has to consider going private just in order to get seen, I feel they are forgetting about us, the patients in all of this.
Just out of interest what roughly is the cost of going private?
I intend to write to the trust and others about this situation after I've got an update on Thursday.
Any further news and I'll post it on here.
I am really sorry to hear about the mess at the QE! I think that writing to the Trust is vital....Pals is a good start but I would try and get the name of any trust heads and write directly to them. You could even tweet about it, as this sometimes has more of an impact (not being blaming, just stating the facts and the impact). As KC is relatively rare in comparison to some conditions, it's easy for us to go overlooked. I used to go to Dudley road and had some horrible experiences there. But equally, I have been to solihull hospital for check ups on KC, not for contacts, and had great care (empathetic, fast). Although, I have never managed to get a pair of contacts that fitted okay on the NHS, not that any one tried too much. Appointments took months and lens' offered didnt work. Good luck with it!
If you have any spare cash lying around I would try and go private if you need contacts quickly. This is not cheap, but if you need your contacts to function then I would do it in a heart beat. I go to the Contact Lens Specialist in brum (link below). It's right by New Street train station. I have dry eye (like lots of us) which causes problems, but they spent hours trying to fit me with contacts (I mean overall like 15 hours) and it felt really important to the guy doing it! My left contact fits great and I get good vision. My right eye likes to kick up with dry eye, so causes lots and pain and wearing lens consistently is near impossible atm. These guys have direct links with a specialist in London too (Burnett Hodd) who I also found really helpful, but got v expensive going to london. All in all, I have currently paid around 1k over the last 15 months, this covers any appointments for any eye problems (dry eye/allergies) and also covers a 50% cost reduction on new lens if I lose/break one. You can do it via monthly payments. The are cheaper lens at the practice, but we tried a few different ones over three months and I had little success with other brands (E.G. Rose K). I am guessing I will need to purchase a new pair in the next few months, but they have said of they are still in good condition to not worry about buying more! If you book in ask to see the person who has the best knowledge of KC.
On the other side of this- Have you guys found getting good lens fit on the NHS in west mids an option? I would love to try this over the next few years. The cost is very painful going private (but I initially jumped into this sector due to needing some okay contacts fairly quickly for driving at night).
No change at the Q.E.
I recently phoned the new head of department and left a message to see if there had been any progress and guess what, I've heard nothing back whatsoever.
Also my appointment for January was cancelled with no sign of a new one.
Interestingly enough whilst at a Boots contact fit for my non Kera eye it was suggested that I could get a referral to BMEC through themselves by booking an eye test for my Kera eye. Basically they would put me down on the referral as being formerly under the QE.
Any high Street optician should be able to do this.
As far as I can see the QE have withdrawn their contact lens service and as such any former patients need to get referred elsewhere as soon as possible.
Broderick - I have booked myself in at The Contact Lens Practice but as money is tight I do resent having to do this.
Previously my lens fit through the QE was fairly decent but that option has now gone.
The withdrawal of the contact lens clinics shows an appalling lack of care by the QE towards their patients, the way we have been treated is nothing short of disgusting and I will make sure the University Hospitals Birmingham NHS Foundation Trust plus my local MP are fully aware of the situation.
Hello, sorry to hear of your problems, I'm just wondering couldn't you be refered to another hospital?
Even if it's not in your region wouldn't this be better than going private?
There are clearly real problems of staffing in the contact lens department at Q.E right now, which must be very frustrating for patients there. Until things get resolved, getting referred to another hospital in the area is obviously an option, though it's not going to be an instant solution with waiting times for clinics.
Referral is at the moment the only option & as I said previously it seems the most effective way of doing this is via a new eye test via a high st optician leading to a fresh referral to a different hospital. Something the QE should be offering to do anyway. Private is a necessary short term measure to get a replacement lens.
Just an update - I attended for my appointment at The Contact Lens Clinic who were very good, ran a battery of tests during which they informed me I also had mild Kera in my other eye as well. They fitted a semi-haptic schleral lens which felt great however they were unable improve my vision with this lens at all. Without the baseline history from the QE they can't rule out disease progression possibly requiring a graft which is a worry especially as I drive for a living, which I am going to have to give up.
I have made a complaint about the QE service and am waiting developments and hopefully sooner than later a referral to a decent department.
Anyone else who has had similar with the QE please let me know.