OUCH(UK) Organisation for the Understanding of Cluster Headache

Donate

Advice Line

0800 6696 824

Refused oxygen Scotland.

6 posts / 0 new
Last post
#1 Wed, 27/03/2024 - 16:12
SarahLouisex
SarahLouisex's picture
Offline
Last seen: 1 week 7 hours ago
Joined: 27/03/2024 - 16:01

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?

Thu, 28/03/2024 - 14:37
Colin Allen Vic...
Offline
Last seen: 19 hours 40 min ago
Joined: 21/03/2012 - 15:19

Hi Louise,

                 One of the advice line team will be along shortly to give you suitable advice. Good luck!

                 

Colin Allen

Vice Chairman

Thu, 28/03/2024 - 14:57
Val
Offline
Last seen: 11 hours 24 min ago
Joined: 21/03/2012 - 15:16

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

Fri, 12/04/2024 - 16:10
SarahLouisex
SarahLouisex's picture
Offline
Last seen: 1 week 7 hours ago
Joined: 27/03/2024 - 16:01

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.

Mon, 22/04/2024 - 13:03
Val
Offline
Last seen: 11 hours 24 min ago
Joined: 21/03/2012 - 15:16

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

Mon, 22/04/2024 - 17:52
Val
Offline
Last seen: 11 hours 24 min ago
Joined: 21/03/2012 - 15:16

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

Login to add comments

Share This

© OUCH(uk) 2024 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368