Palliative Care Input

Hi all - hope you are all as well as can be!

My asthma has been deteriorating at a fair rate of knots recently, and affecting everything I do - I have been using a wheelchair at times, and am considering applying for a Blue Badge (when I go home to Devon I drive, but not in London!). My attacks are still severe and frequent, but it's the nagging breathlessness at the slightest exertion that is getting me down. Even a gentle stroll to the shop for a pint of milk is getting difficult...

So, my question to you: has anyone on here, or someone you know, had palliative care input for asthma symptoms? I realise that palliative care in its true sense (i.e end of life) is (hopefully) a fair way off in the future, but these professionals are used to dealing with symptoms such as breathlessness and have access to less-than-routine treatments etc and may have some suggestions as to how I can ease this. My consultant doesn't seem to be able to do much about it and am wondering if it is possible to speak to a palliative care nurse on request?

Any suggestions appreciated!

Emz x

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Hi,

I think palliative care is probably the wrong people to speak to as this really si end of life care but also more pain management and breathless associated wiuth end of life rather than asthma.

I read your profile and your meds section and there are still a few things that can be tried to get symptoms under control and have meds swapped about a bit. It does take alot of tinkering sometimes with meds to get the right combo. after 7 years of hospital admissions with little time inbetween each admission i am finally getting somewhere and have jsut spent the longest time out of hospital in that seven years and it is 3 months!!!!

Also do you see a specialist at a tertiary centre like RBH or heartlands? Might be worth getting a referral there if you finding your really bad.

Ol

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Just to back up what Olive said really, palliative care really really wouldn't be appropriate, however there are a few differet sections that may help you. For instance you could ask your consultant for a referal to the community nurses, they can give you support advice, and provide home care. Do you have an asthma nurse? these are a life line and can often help prevent large dips and help you out when your begining to feel rough.

Are you under a specialist centre? If your not It would be a really good idea to get a referal, they never run out of ideas, and won't give up on a patient. Maybe if your not already under one you could ask your consultant. The main ones are London Brompton and Birmingham Heartlands, however there are a few others.... (I just don't know where or what there called!)

As for applying for a blue badge, if your struggling and fit the criteria of holding a blue badge, deffinetly apply, hopefully it would significantly help you getting out and about. However I really don't think you should just accept how you feel, your consultant should be doing everything he/she can for you to improve your asthma, and being so symptomatic shouldn't be accepted!

Good luck!

Ally

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Thanks for your very helpful replies - I wasn't sure what else to term the input I need, but the idea of community nurses seems a very good idea. I am under a respiratory nurse - she is absolutely fantastic, I am very lucky - and see a consultant at Guy's Hospital here in London. Would a consultant at, say, the Brompton be able to do anymore than the prof I am seeing? My current cons is mostly allergy-focussed (I have largely non-allergic asthma though) although he is at the forefront of trials for Xolair in non-allergic asthmatics, and he is very keen to get me on the trial as I am apparantly the ""perfect candidate"" in that I have severe, difficult non-allergic asthma.

Would it be appropriate to ask to a referral to a specialist tertiary centre? Or would the ball be iin his court so to speak?

Thanks again for your help, all ideas greatly appreciated!

Emma x