NHS

I telephone my care co ordination centre to be told there is no one here you can either ring 111 or go to your nearest urgent care centre.

I naturally choose 111 as I could do that from my bed - preserving energy is key when breathless and tight chested with asthma. The questions they were never ending and the best one have you been seated for any long periods of time. I confused the call handler. I am a wheelchair user. This should have been a self explanatory answer but no I got asked again have a been seated for long periods of time. yes I am a wheelchair user. I am now on the seek primary care within 12 hours list but believe a nurse is to ring me within an hour. All to get some reassurance I am ok to continue as I am doing. I just could not justify popping to emergency care when my blue inhaler is working. will the media stop telling me to only go to emergency care in an emergency it makes me so nervous about seeking medical advice.

[Pebbles1012]

Hi Julie,

I’m sorry to hear about your experience.

I too am a serious asthma sufferer but also a specialist nurse in the nhs ( not for asthma)

I would suggest you talk to your specialist nursing team and draw up a management plan.

That will help you know what you can safely do at home and will also guide you hen your asthma is worsening and you should go to hospital,

If you ever feel your asthma is not controlled then never worry about getting yourself to a & e.

Having a plan in advance is very empowering and will stop you having these experiences with nhs people who don’t know you or your asthma.

Hope you feel better soon

[Hidden in reply to Pebbles1012]

Once it gets to 9am I am going to ring care cordination centre back and ask for the community matron to contact me. I am still waiting to see a new respiratory consultant as for some reason now after every visit you are placed back on a waiting list.

[Chloe2057 in reply to Pebbles1012]

Great advice. However NHS staff in East Anglia DO NOT follow these guidelines! They are also gagged regarding Pesticide Issues. Happy to talk in private but nothing on paper! This is whilst l am being treated with drugs of last resort under”Glyphosate Poisoning Guidelines produced by NICE! Staggering!

[emmasue]

I know how you feel. Accessing care is so difficult. I was bad at the weekend but didn't want to go through the 111 rigmarole so just sat on the sofa all day. My asthma nurse told me off on Tuesday for not doing something about it but the times I DO do something about it, I get treated like a time waster. I hate having asthma because it makes me incapable of daily activity but health care workers don't think I am so bad. I don't know what to do to change the situation. 😢

[Hidden in reply to emmasue]

It is reassuring for me that I am not alone in this. Thank you for replying.

[emmasue in reply to Hidden]

I have just emailed Asthma UK to ask if they are doing anything about this issue. I am interested in their reply.

[Hidden in reply to emmasue]

Hi Emma,

Just to let you know we've got your message so will take it a look at it next week.

Dita

[emmasue in reply to Hidden]

Thanks so much.

[Hidden]

Hi Julie

Sorry you had a bad experience with services. I hate when they make you feel guilty about being sick.

Do what is right for you whatever the media say, it is just stirring up politics. You have patient’s rights and the NHS has a duty of care. X

[Hidden in reply to Hidden]

Thank you for replying asthma at night is so scary.

[Hidden in reply to Hidden]

Yes it is..nocturnal asthma can be treated..time to see the doctor/specialist again 🌸

I have to take 2 puffs of Ventolin and two puffs of Atrovent, it used to be 2 puffs of Ventolin and 2 puffs of Seretide..Anyway it was a good tip for me it prolonges the effect of the Ventolin..

Sometimes I have to use my nebuliser at night. I try not to lose control of my asthma but if I am sick it gets difficult..

I take the Asthma UK test and it gives me an objective result, tells me I am slipping..it is another job I know being vigilant..take care Julie x

[Hidden in reply to Hidden]

For some reason every time you see a consultant at Sheffield you get put on yet another waiting list for a follow up appointment- i know i am also back on the waiting list further breathing tests too. I expect it will be 2018 before I get anywhere near the too of the list and the local asthma nurse is a joke. she refuses to do or prescribe anything the consultant says.

[Hidden in reply to Hidden]

Oh my..normally in London the consultant wrote to the GP and he prescribed. I booked in for a follow-up appointment at the reception before I left because their correspondence was a joke sometimes the letter arrived after the appointment!

There is a problem in every country Switzerland public health system is non-existent. I found a good lung specialist but the consultant is in Lyons in France because I have a rare disease. Although I do attend the Swiss hospital we never get reports nor the lung specialist nor I!

Anyway good luck, put your foot down x

[Chloe2057]

Fantastic response agree 100% with everything you have said. We now own a BNF (Doctors what we should perhaps prescribe book) and use an older really knowledgeable pharmacist. I personally ❤️ my Vet and have been known to call him for advice! He is excellent, straight, honest, trustworthy and not GAGGED by the NHS! My husband says he has never had ONE piece of advice from 111 they may send Ambulance, when Ambulance paperwork is checked l appear to be MO FARAH and l am sent home after 4 hours where l have frequently collapsed and needed ITU! 💕 Chloe