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(13 Posts)
annodomini Sun 17-May-15 14:24:16

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.

Coolgran65 Sun 17-May-15 13:33:34

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.

janeainsworth Sun 17-May-15 12:59:08

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

nortonc Sun 17-May-15 12:53:12

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

Mishap Sun 17-May-15 12:49:10

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.

Teetime Sun 17-May-15 12:43:36

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.

janeainsworth Sun 17-May-15 12:36:01

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.

Tegan Sun 17-May-15 12:30:30

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.

durhamjen Sun 17-May-15 12:20:02

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.

Tegan Sun 17-May-15 12:08:17

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

whenim64 Sun 17-May-15 11:28:29

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.

loopylou Sun 17-May-15 11:09:40

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.

nortonc Sun 17-May-15 11:06:00

I am 73, have always been very fit and active despite leading an extremely stressful life. I am happy to accept ageing brings wrinkles and grey hair. It's the other things that are taking me by surprise! In late Feb I noticed a difference in vision in one eye. My optician said I had a retinal haemorrhage. He asked for an emergency referral to local ophthalmic clinic. Despite being 'urgent' it took a week for an appointment. Saw excellent trainee doctor who explained problems and wanted to start treatment immediately stressing delay would cause further damage. Clinic were too busy and he said I would get an app. for treatment to start within following two weeks. It was a month later before an appointment and then only with intervention of my GP. Expected this app. was start of treatment but it was another consultation. Consultant most surprised I hadn't been referred to him sooner - blip in system - said I had very severe retinal haemorrhage and delay had caused permanent damage. He was arrogant, uncaring and didn't once look at me during 10 min. consultation. Prescribed Lucentis injections into the eye but doubted they would do any good, then reeled off long list of frightening possible side effects. Despite being 'lost in the system', nothing he could do but add me to end of urgent referrals list but no appointments for another three to four weeks. Desperate for second opinion, with difficulty I paid privately which confirmed what first consultant had said and again that injections unlikely to help. My GP also said the same. I was terrified of these injections anyway so when app eventually came I cancelled it. I asked for a further consultation but was told it would be June before I could be seen. Saw my optician last week. He said I had effectively had a stroke but had been lucky in that it had not gone in towards the brain but had come out in my eye. I was highly likely to develop glaucoma after the haemorrhage particularly within the first 100 days although neither consultant had explained this. Apparently injections kill off growth of small new veins trying to compensate for damaged veins as new veins are weak and likely to further haemorrhage.I am now seriously worried and yes, very frightened. Since cancelling the app for injections I have heard nothing from hospital although feel they should be at least monitoring my condition. I don't want injections into my eye, further haemorrhages or a stroke. No-one seems to understand how I feel or how worried I am. I know NHS is in crisis but it's always the patient that suffers. I feel so helpless and am fed up with being relegated to a number that no-one cares about. Any help or advice out there? It would be much appreciated.