Extra support at eye hospitals

[Louise Pembroke]

I thought it might be useful for me to relay to members something I experienced roughly 13 years ago. I don't know whether they are still available, but if they are it might be useful to some members, especially younger members or members feeling especially vulnerable.
When I was going through episodes of rejection/loose stitches with my 2nd graft that also coincided with a very bad period in my life. As a consequence, I was finding it hard to make appts which are crucial as we all know and I couldn't always ask the questions I needed to ask of the doctors. During an admission to control an episode of rejection I was given access to a eye 'nurse counsellor' who was quite separate from the rest of the team. I didn't know such nurses posts existed. My experience of her was very positive - she gave me her contact number and offered to sit with me in outpatients when I had an appt if I was feeling very wobbly and I took that up once or twice. She offered to ask questions and get information that I didn't feel able to, and she gave support without being intrusive. I appreciated the support she gave me that year and if anyone ever felt as vulnerable as I did then, don't hesitate to use such a service because it makes a hard situation more bearable.

[Sweet]

You know there are loads of nurses roles out there and even as a nurse i don't know that half of them exist! I think this is because nurses get to know their patients and sit there with them through all the bad times. They see how upset patients get, how much pain they are in and indeed how confuised they get when doctors run in waffle a load of medical jargon and then disappear without any explanations in a language that non medical staff can understand!!

This is why i asked to be an opthalmic link nurse mainly to give support and info to patients but also to provide some teaching to nurses as most are very apprehensive about eyes and contact lenses.

So it doesn't surprise me that some nurses have seen the same gap where eye patients are concerned and have put together a counselling service. I really hope that patients can get a lot of use out of this as fear is a major problem in attending hospital and some doctors do forget this.

On that note i'm now terrified to go to my follow up but as there are no nice nurses there to support me i need to be brave and nurse myself!! LOL!

Sweet X x X

[Louise Pembroke]

Sweet, could a friend go with you?
I know this is difficult during 9-5.00 with working.

May I make a suggestion to members;
How about if we had a seperate topic posting where members could choose to say if they were available at all to accompany a fellow KCer to an appt [or be available for a phone call afterwards], and in addition which hospital they are closest to.
For instance, many of us go to Moorfields, some of us live in London and might be able to accompany someone. We could list possible availability [days/times] and be contacted by PM to see if we are free on the day.

[Sweet]

Louise thanks for that. It was all ok in the end, my best friend was working but i dropped in to see her afterwards as well as dropping by Moorfields to say thanks for the observation day and had a chat with the nurses in 'A & E'.

I also got a lot of emails and text messages from friends here so while it wasn't in person it still helped a great deal so thanks!!!!!!

Hehe everything is fine now, just counting down two weeks now until i am seen again!! AARGGHHH

Sweet X x X

[Louise Pembroke]

Good! glad you saw your best friend and text/email whilst you wait is a godsend.

[Andrew MacLean]

Louise, Sweet

I could not agree more that it is enormously helpful to have somebody on hand with whom to share anxieties

I had not understood how important this could be until the day the consultant spoke the words "It is time to think again about a graft."

He let me go back to the waiting room THREE TIMES before he asked for my decision. Outside I was able to talk to somebody who knew both me and something about Ophthalmological procedures. together we put together the questions that I asked on each of the subsequent times I was called in to talk to the consultant.

At the end of this process I was happy that I knew the possibilities and the potential pitfalls.

If it is possible to have a nurse on hand to whom you can talk, take up the opportunity. If not, it is always a good idea to have somebody not too closely involved in the family who may be as traumatized as the patient by the news, just to say, "Did you ask about ..."

All the best

Andrew