health care

Oh dear nortonc I can well understand how frightened you must be. I don't have any personal experience of that type of injection but BF's husband has had several of them and said he didn't feel anything because they put anaesthetic eye drops in first.
Hopefully someone on here will be able to help.

How wOrrying, nortonc. Your description of what you have experienced so far is very well detailed, and I would suggest posting what you've written, or emailing it, to the head of the department covering your appointments, copy to your MP and GP. It might be helpful to have a friend or relative alongside you for any more appointnents. I hope you get the support you need soon.

There must be patients organisations that will take up your cause, nortonc. In the meantime you 'must' keep a record of what happened and when. Telephone conversations in the NHS are recorded. It took a friend of mine 10 years to get compensation for a mistake made by a doctor [he lied constantly] but eventually the initial conversation was produced which proved that her memory of what had happened was the correct one. When will the NHS realise that cost cutting in the short term costs more in the long term and messes up peoples lives in the process. My neighbour was sent home from the doctors with a 'headache' when he had, in fact, had a stroke. Thankfully he recovered fully. Just wondered; if, as you say, you'd had a stroke of some kind, have you been put on aspirin

The NHS had to save £20 billion over the last parliament - the Nicholson Challenge.
Despite the government saying it will put £8 billion into the NHS over this parliament, the NHS is still expected to save £22 billion in efficiencies because there is a £30 billion black hole.
That's why these things happen.

I also wondered if the Royal Institute for the Blind would give advice with regards to the safety of certain treatments [not wishing to alarm you by saying that norton but I assume that they have knowledge of all sorts of degrees of sight loss and preventative measures that can be taken]. I just feel that you should be being given more help/advice/reassurance than you are getting at the moment.

nortonc I'm sorry you've had such a bad time and as tegan suggests, there may be a PALS (patient liaison group) that can help you.
But one point - if you cancel an appointment, you've effectively declined treatment which may be why you then had to wait for another consultation.

I do wonder too, if you've misinterpreted or misunderstood about the injections. My MiL has had several lucentis injections for macular degeneration, and was told they cost £7K a pop, so the consultant won't have suggested them (nor will the NHS allow it) unless there's some sort of benefit to you.
It may be that the benefit is not that your vision will be improved, but that further episodes will be prevented.
Finally, like you MiL was terrified of the injections, but as someone else has said, your eye is anaesthetised first and you don't feel the injection at all.

I do hope you get it sorted out, (I know from personal experience how worrying it is when there's something wrong with an eye) and I do think you should have been seen more quickly in the first instance, but I would concentrate on getting the right thing done now, and getting g a clear understanding of what is going on, rather than getting involved in a complaint about what should have happened in the past.

nortonc I am sorry to hear what a confusing and frightening time you have been having. I would go bak o basics and start again with your GP whose practice is responsible for commissioning(buying) hospital services on your behalf. He/she will be very concerned to know how you have been treated and can get this sorted for you without you going to further expense and worry. Additionally the surgery will have a patients representative group that you can also tap into. Good luck with it all and let us know how you got on.

Sorry to hear of your experience.

I have had poor experience of the PALS service in that everyone ganged up to deny what had happened. I hadn't got the energy to argue in the end.

I have had various things done to my eyes over the years and not found them painful because of the efficient anaesthetic.

If they are telling you that basically the mechanism behind the problem is a stroke, are they talking to you about preventive measures? - e.g. checking BP, cholesterol etc. Might be worth discussing that with GP.

Thank you all so much. Your messages are so much appreciated.

Let us know how you get on nortonc and welcome to Gransnet, if you've just arrived

What whenIm64 said !!
Get to GP, make a fuss, request urgent treatment,
Your original post is very comprehensive, use it.
Copy and paste it into a letter/document. Give to GP, send to hospital appointments, to hospital CEO/management committee, The Health Minister.

Don't hesitate or worry about making a fuss.

I agree. You have been treated disgracefully and, at the very least, deserve a full apology. As well as the recommended recipients of your letter, I'd also recommend sending a copy to your MP.