Do you want to improve your wellbeing with asthma? Do you want to tell the NHS about your experiences and help improve asthma care?

The NHS are creating a new treatment resource to help improve your self-management of asthma and take control of your mental and physical wellbeing.

*Interested to help?

We would like to hear from your experiences living with asthma - any ideas and experiences you wish to share will help us understand the key issues, and will be incorporated into the development of this new resource, which will benefit other patients.

Message us to find out more about the resource!

34 Replies

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  • This sounds really interesting, whereabouts are you going to be running the project?

  • Hi sophienhs - great to hear from you! We have focus groups running throughout June in Central London (by Euston Station) and will have support groups nearby as well.

  • This does sound very interesting.

  • I have lots of experiences with asthma :( would really like to help! Can we get access to the resource when it's done as well?

  • Hi natasha12, yes the resource will be available through the NHS from the end of March 2017. It would be great to hear from your experiences and any ideas you might have whilst it is still in development!

  • Yes,I'm very interested in this ..but only if it's covering more areas. .I would find trying to travel to London too stressful...perhaps if there is enough interest from South Coast Areas..you perhaps might consider coming to Brighton? With Thanks..😊

  • Hi corazzon, I understand travelling to London can be very stressful! We would still value hearing your views via email or telephone to ensure we are meeting the needs of people with asthma.

    If you'd like to message me your contact details, we can always contact you to gain your feedback on the development of this resource as it updates (we would contact you approximately once a month). If you did this you'd be welcome to ‘opt out’ of contact at any time, but this way you'd still be contributing to the development of this new resource and would gain skills and experience in improving NHS services. We may also set up an online focus group soon to discuss this topic which you would also be very welcome to take part in.

    If you wanted to help in these ways, you would have an opportunity to join the project team (made up of about 10 psychologists, mental health therapists, asthma nurses, and doctors, who would all happily act as a referee for your CV or keep you updated on future similar projects that might interest you) as a service user representative and would be given opportunities to attend relevant training sessions and events.

    Many thanks,

    Kate

  • Yes I would

  • Hi I live in Bristol. My local surgery has provided me with excellent care since my f I rest

    First asthma attack end of last November. Having access to a great asthma nurse of 20years eexperience has really helped. Only one cristism there is no literature/leaflets for the doctors surgery. Would it be possible to sent them some The rack where it should be is empty for months. Dr surgery bradgate surgery ardent on walk brentry bristol bs106rl. I have been involved with asthma uk to help them develop their forum and prompt self management of asthma if you want to contact me further please do so.

  • Yes, I would like to be involved, though I also would find it very difficult to travel to London. Having Asthma for over 50 years, I hope I can be of help.

  • I would be interested, but cannot travel to London. I live not far from Birmingham though. I have had asthma since I was two, but I lived in America until I was 22. I have been in the UK ever since (I am nearly 40 now). I think the GP care has improved over time. I am under the asthma nurse (via the respitory consultant) at the hospital following a hospitalisation three years ago. She is brilliant but the only annoying thing is that she cannot refer me on (to the ENT in this case) because it has to be done through the GP and the GP refuses to do it. So she (through the consultant) is not able to treat me how she feels that she needs to because she does not have access to the specialists she thinks I need to see.

    My biggest worry is emergency care, either through A&E or through the out-of-hours service. On several occasions in the past year or so, I have been to A&E or the out-of-hours and have been told that my asthma is not too bad. Part of the problem is that I have a good peak flow normally (around 600) so a bad peak flow for me seems normal. Once, I was so bad I was actually blacking out, but because my peak flow was 450 the nurse and doctor said that I wasn't too bad. I at least had access to a nebuliser that time and my breathing settled a bit. On another occasion, I went to the out-of-hours. The doctor gave me a nebuliser which didn't help. She was concerned that I wasn't improving and sent me to A&E. In A&E I was told that my asthma wasn't too bad and that I should just use my Ventolin with a spacer regularly and sent home. I spent the rest of the weekend in bed because any activity left me so breathless that I couldn't function. On another occasion, I went to the out-of-hours with a bad chest infection that wouldn't clear. I had finished the antibiotics and I was struggling to breath. He basically asked me what he wanted him to do as he felt that I had already been treated sufficiently. He actually said that I couldn't be too bad because I had managed to walk in on my own (despite gasping for breath). It was a bank holiday so I had to wait two days to see my GP in order to receive extra steroids and an expectorant cough medicine. I had to spend that time in bed again.

    I guess I feel that emergency care does not recognise the seriousness of asthma nor the range of symptoms and expressions of the condition. I hope that in the future, I would receive treatment if I needed it instead of being told that I the best I can hope for is to suffer a breathless few days until I can see my GP.

  • Hi emmasue, you've raised some very important points. This feedback is really helpful to hear so that we can learn how to improve the care we offer. We are running focus groups in London and online which will discuss how to improve patients' experience of the care they receive, including which areas in the care pathway risk causing a patient anxiety, like you say, and how to avoid this in the future. I will send you more information about this project in a message. Thank you very much for raising these issues and commenting on the post.

  • Dear Micky, as I said, look up "Strelnikova exercise to reduce attacks" on the Internet. Keep on practicing the short sharp inspirations breathing through the nose, If you persevere this should make nose breathing much more attractive. The exercise itself is good for fitness generally and should help you get off the asthma medication with its bad longterm effects. Cheers, Richard Friedel s3e0101@mail.lrz-muenchen.de

  • I'm always interested in any new developments but like others am too far away from London for any face to face discussions. I'm happy to chat over the phone or by e-mail though; drop me a PM if you want my contact details.

  • Hi Minushabens, that's great and there are plenty of ways you can help over the phone or by email! I'll send you a message now with more details about the project and you can let me know if you are still interested to help.

  • I would be interested in helping but I am no where near London. Will this be expanding to other areas of the the country and NHS trusts? Differing A&E experiences would be something I would like to raise.

  • Hi Beth_19, yes! This project is being led by Central and North-West NHS Foundation Trust and Imperial College Hospitals. The treatment resource will begin in London, but will expand nationally. Differing A&E experiences is a very important point to raise - we will value listening to and learning from your experiences.

  • Thank you. If you could let us know when it is expanding northwards, that would be great.

  • Hi, I would be interested as I normally get treated in UCLH and only live a short distance from Euston. I have had amazing care in A & E . My problem is when I am getting bad my doctor panics and throws everything at me and I feel I am not being listened to and they just want me out. I sometimes have an attack with little or no warning. Or I can have a week or 2 before I drop badly. I hope I can be of some help.

  • Hi fallon12, you can definitely be of some help! I will send you a message with more details.

  • are you doing anything in Scotland?

  • Hi Alliecat, this project is being developed in London, but we would value hearing your feedback and learning from your experiences which you can always share over phone/email. If the treatment resource is successful it always has the possibility of reaching Scotland!

  • I too would be interested in helping but like others, cannot easily get to London. I have had asthma for nearly 60 years, the past 3 being worse.

  • This is a great idea, but is there any possibility that this is going to happen elsewhere in the country so that asthmatics in other areas can benefit?

  • I have just filled out the questionnaire but unfortunately I was not eligible as I have COPD as well as asthma.

  • I am interested in helping out and can travel to London if necessary. You can contact me through my profile. Look forward to hearing from you

  • Happy to help - been under care of specialists for years and have difficult to control asthma / cough variant asthma - contact me through profile

  • had a good chat with Kate the assistant physiologist and looks like I could be involved.

  • not going to meeting as I can't go that distance in one day. I was hoping to stay with my sister but she got another lodger now. Will now be involved on line.

  • Dear Kate, I would like to be involved (50 plus years of asthma and my son (19) is a severe asthmatic). I could probably get into London to any meetings. What do I have to do next? Many thanks.

  • Hi angievere, it would be great if you can join the project meetings in London! I will send you a message now with more details. Best wishes, Kate

  • Hi I would love to involved too as have suffered from asthma for around 30 years. I am nowhere near London though but if it can be through email or phone that would be great. x

  • If you have asthma and also experience anxiety or low mood, come along to our focus group discussion on Tuesday 21st June in Central London and help design a new treatment resource that is integrating physical and mental health support for people with asthma!

    We'd really like to listen to your experiences to learn how we can improve the care we're offering...

    Do feel welcome to message/email me for any further details about the focus group or project.

    Best wishes,

    Kate

    Central and North-West London NHS Foundation Trust

    Tel: 0207 612 1665

    Email: k.lindleybaron-cohen@nhs.net

    Website: cnwl.nhs.uk

  • I am a newbie to asthma, though I suspect I have had it all my life, mildly, perhaps n part never diagnosed because I don't wheeze. I would be willing to contribute from my perspective (why no action plans locally, for instance? ) I cannot travel to London, not just stressful but also expensive, so it would have to be phone/email. I am struggling while I am learning and my experiences around that could be the main focus of my contribution. I have also brought up a daughter whose asthma I managed from very small.

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