"My daughters treatment"

About: Western General Hospital / Neurology

(as a relative),

My daughter’s treatment at Western General began 4 years ago after complaining of headaches.

Scans showed there was excess pressure behind her retina and a spinal shunt was inserted to drain the excess fluid. The shunt relived the pressure behind her eyes but caused other symptoms – I feel these symptoms were dismissed.

In July this year we were told that the last scan was different from those previously taken – it showed an abnormality. This scan had been taken a while ago and we had been told the doctors were happy with it.

In October after pleading with the doctors my daughter was given an MRI Scan to see if the shunt was working properly. The scan showed that the shunt was not in place and it was over draining the fluid. We don’t know when the shunt became dislodged I do know my daughter has been in a lot of pain and have been very sick for a long time. I feel they are always playing down the symptoms caused by the shunt when it was first put in.

When we ask about pain relief we are told she has a low pain threshold – who are they to say that? When they do give pain killers they are in tablet form even when she is vomiting and unable to keep them down to have effect.

There is just no plan for managing her condition. Her headaches were put down to migraine, but it is not migraine. I feel there is no involvement of my daughter in looking at the treatment options.

Each time there is a problem we have to start again, explaining to a new set of people what the problem is, how my daughter is feeling and what can be done to treat her.

We should not have to go through the same ground again and again – for example if after having tried a particular treatment she is then discharged to monitor the effects, she should be able to go straight back to the ward or the same staff so that they know her history and what has worked / not worked for her.

Above all it is the pain my daughter suffers that gets me. Doctors don’t seem to be listening, they say she cannot have morphine because of her condition but surely there should be another form of pain relief that is suitable for her? Even after taking three different types of anti-sickness tablets she cannot keep anything down so how are oral painkillers going to help?

Another thing – the lighting is too bright. My daughter’s condition makes her very photosensitive. We asked if she could have her own room but there was not one available, she was on a 4 bed bay where the lights were switched off when we asked. However, they get switched on again whenever someone else comes into the bay.

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Response from Customer Relations and Feedback Team, NHS Lothian

Dear Mayb0

I believe you may have already submitted a complaint to the Customer Relations and Feedback Team. If I am correct your complaint is presently being investigated and you will receive a response as quickly as possible.

If I have got this wrong or if there is anything further you would like to discuss please call the Customer Relations and Feedback Team on 0131 536 3370 or email craft@nhslothian.scot.nhs.uk and we will be happy to assist you.