Refused oxygen Scotland.
Refused oxygen Scotland.
Hi, I'm at my wits end and have searched here and many other places looking for the answer and I'm lost.
I've finally been diagnosed by a neurologist and with that, I should now have access to oxygen. Unfortunately my health board has been running behind so my appointment was outwith my area but still NHS Scotland, they're just taking over so we can catch up on neurology outpatient appointments. This in turn meant that the neurologist had to send his treatment through to my gp, who then requested the oxygen through the respiratory department. The respiratory department said no, the referral has to come from a neurologist. After a lot of back and forth I've now been informed that I was given the wrong information and that my healthboard never has and never will prescribed oxygen for "headaches" and they will be informing the other healthboard of this.
I don't understand how this could be? I've read online but a lot of the information is for England and Wales. I don't know what fits Scotland and where to go for help? I'm in bits as I need that oxygen and was told I could have it after waiting 5 years for this appointment. Does anyone know where I can get help to fight this?
Login to add comments
Hi Louise,
One of the advice line team will be along shortly to give you suitable advice. Good luck!
Colin Allen
Vice Chairman
Hello Sarah,
In Scotland oxygen is prescribed by the headache neurologist, not the GP. Who was the neurologist you saw and at what hospital? We don't have access to the forms used by the consultants. The oxygen company that has the contract for Scotland is Dolby Vivisol.and i suggest you tell the headache neuro to give them a call to sort out the prescription. Get back to us if you are still having problem. We rarely get 02 prescribing problems from Scotland., So hope this is sorted out soon.
Val
Hi, sorry for the delay in reply. I wanted to have all the information before coming back.
I'm in the Ayrshire and Arran area. I spoke with Dr Soane from Forth Valley over the phone, so no hospital but was arranged by Crosshouse hospital. Ayrshire and Arran are behind on their neurology outpatient appointments and have asked Forth Valley to cover them.
I have just got off the phone from Dr Soane who has got back in touch to let me know that there is no contract down in Ayrshire and Arran for the home oxygen and there is nothing he can do. He has spoken to the Neurologist in Glasgow who usually cover us and they have confirmed this to him. I've been apologised to by him and his understanding was iit would be available but I am at a loss on how to continue now.
I seemed to have pulled the unlucky straw at every turn, I waited near enough a decade to finally be believed and now it feels it was all a waste of time with I can't even get the treatment.
Hello Sarah,
I have been in touch with Dolby Vivisol who have the contract for supplying oxygen in Scotland, and the confirmed that it is available in the Argyll and Arran area, and they suggest that Dr Soane gives them a call if he is in any doubt. Dolby also confirmed that it covers the whole of Scotland for oxygen, and certainly for cluster headache. In the meantime, I would suggest that you ask your GP to refer you to Dr Alok Tyagi at the Queen Elizabeth Hospital in Glasgow, he is a headache neurologist and has a headache clinic. You need to tell your GP that they need to make a referral thru the 'Sci gateway' and mark it URGENT, you should be seen fairly quickly. I hope this helps, and please get back to us and let us know how things go.
Best wishes
Val
Hello Sarah,
I have been in touch with Dolby Vivisol who have the contract for supplying oxygen in Scotland, and the confirmed that it is available in the Argyll and Arran area, and they suggest that Dr Soane gives them a call if he is in any doubt. Dolby also confirmed that it covers the whole of Scotland for oxygen, and certainly for cluster headache. In the meantime, I would suggest that you ask your GP to refer you to Dr Alok Tyagi at the Queen Elizabeth Hospital in Glasgow, he is a headache neurologist and has a headache clinic. You need to tell your GP that they need to make a referral thru the 'Sci gateway' and mark it URGENT, you should be seen fairly quickly. I hope this helps, and please get back to us and let us know how things go.
Best wishes
Val
Hi, I know this is old but I'm still having the same issues with oxygen. I've been told there is no supplier of oxygen cylinders in Ayrshire and Arran, only home oxygen as a plug in machine? Is there anyone who can help me with this as I'm still getting nowhere, just apologise and told I'm asking for something not available. I've waited the time they said and still nothing
Hi SarahLouise.
Sorry you're having problems again. I'll find out what I can.
Hello Sarah,
I'm going to make enquiries with SIGN and with Dolby and get back to you. They are right that oxygen is prescribed by consultants in Scotland, but as for the rest I am very surprised. Will get back to you as soon as I hear something.
Val.
Thanks
Hello Sarah,
I have heard from Dolby and they tell me that there is only one neurologist in your area that can prescribe oxygen for cluster headache and that is Dr Oswald Jack. I suggest you ask you GP to refer you to Dr Jack who can provide the necessary SHOOF [home oxygen order form] to Dolby for cluster headache. There is also Dr Alok Tyagi at the Queen Elizabeth the Queen Mother Hospital in Glasgow, who is an authority on cluster headache and can also complete the necessary SHOOF form. So see your GP and ask to see one of these two gentleman who can submit the correct form tp Dolby to supply oxygen bottles for cluster headache. I hope this gets things sorted for you. Please let me know how you get on.
Best wishes
Val.
Thank you so much, I will speak to the GP and update you.