Help getting oxygen at home
Help getting oxygen at home
Hello,
As most of you have, it's been a journey achieving a diagnosis and coming to terms with it.
My symptoms are chronic and triggered by so many things which has resulted in me ending up having to give up my career.
My symptoms have developed to include my arm being impacted which I believe is called arm ataxia a rare side effect of this rare disease.
I have to go to a&e to access oxygen as I'm told I need too much to have this at home despite a&e consultants saying I should have it at home as it's more cost effective to the NHS to have at home although at a slower flow.
I have sumitriptan but this just doesn't touch it.
I was diagnosed privately after being concerned I had a brain tumour. Having finished work paying privately isn't an option anymore so I'm stuck in a 78 week NHS wait to see what the neurological team can offer. I can't have a lot of medication due to having diverticular disease which a lot triggers and can make me bleed. The consultants wrote to my GP to try and persuade them to offer me oxygen but they insist this has to come from the neurologist. Can anyone offer any guidance on this please?
the a&e consultants I saw last week say they haven't seen symptoms as bad as mine before and I have a complex set of of conflicting issues. I have 2 young children one with ADHD and it is difficult to manage at times.
Thank you
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I obtained Home Oxygen once the consultant had sent my GP his written reccommendations. The GP needs to complete a Home Oxygen Order Form (HOOF) which prescribes the Oxygen. I suggest you request one static cylinder and two portable cylinders that can go with you in a vehicle or if you are away from home. Your private consultation may not be on the GP records as private consultations are not linked into the NHS system, I would take a copy of your consultation write up to the GP to update your records. I will admit this took over a year and two visits to hospital via ambulance to get the GP to approve. I asked the GP to justify the cost of the ambulances & hospital staff compared to the cost of home Oxygen, surprisingly it was approved within 48 hours and delivered.
Thank you, they have the information from the private consultant, I emailed it to them myself. So it's on my records.
useful to know what to request when I'm able to, thanks. The a&e consultants suggested. HOOF form on their letter to the GP. See what happens next time I see one of them.
I believe this does also depend on whether you are in England / Wales or Scotland. In Scotland oxygen has to be prescribed by the neurologist (consultant) whereas I think in England and Wales this can be done by your GP.
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A partially completed HOOF form is available on our drop-down menu.
Get Support: Downloads: HOOF Here.
Plus a demand valve Here.
Many of our members have oxygen in their homes, travelling to A&E is not viable.
Your consultant should be a Neurologist who specialises in headache and TAC disorders. If you give our Advice line a call, we can help find a Neurologist near you.
Hi I am sorry to hear of your situation and I hope I can provide some positive advice.
I was at the hospital recently with the neurologist seeking a demand valve and they stated that in England the respiratory nurses sort out oxygen prescriptions.
My experience has been the process for getting oxygen is over complicated and hence not understood by all within the NHS. This has in the past led to me being turned down.
The main thing to ensure is that your house is safe for oxygen use, as this is a significant hazard. The nurses do this with a home visit. If that is not an issue then I would expect everything else can be sorted
AS for how much oxygen you need, 15l.min is the flow rate advised. there are machines for home use that generate this for you so no need to have lots of cylinders.