SUFAs - have your say!

If you're one of our Speak up for Asthma volunteers you'll have received an invite to take part in today's online debate with our Chief Executive, Neil Churchill.

Neil will be on the forum all day, to lead a discussion on key questions facing the charity. Some of the questions for debate include:

* What are the most pressing policy issues facing people with asthma and how can we get them taken on-board by government – both before and after the next election?

* How can we step up our act locally to improve the quality of primary care? Either through direct action by Asthma UK or policy changes that improve patient choice?

* What priorities should Asthma UK have for the next two years? For example, what more should we be doing about allergy?

* How can Asthma UK improve its membership offering? If you are members already, what do you think of it? If you are not members, why hasn’t it interested you?

To have your say simply reply to this thread. You'll need to register for an account to take part, if you haven't done so already. Click the 'Register now' button on the left hand side of his page and enter a few details. Once you've completed your registration you'll be taken back to this debate. We look forward to hearing your views!

27 Replies

  • I think AUK should have the ability to be able to help people on low incomes buy portable neblisers like the little baby omron. I have recently been in a position where I was able to help 2 very dear friends one of these, it has transformed their lives. I realise this only applies to those at the wrong of the asthma scale but the CF trust offer grants, I would nice to think with the backing of their consultants and perhaps proof of low income more people with asthma at the wrong end could get out and about.

    I would also like to see members rewarded and awarded for the things they do to raise money, to get through tough times, to help others, who have been an inspriation. I see gala dinners advertised they are way beyond what most of us can afford but it would be nice if a little more money on each ticket and it probably won't be much, to allow people like Cathy and Steve to have a little treat to say thank you again the CF trust have their ""breathing for life awards""

    I know these seem a bit off the beaten track for AUK but I am in awe of some people with the way they just get on with it no whinging, helping and supporting others its time AUK said thank you, properly


  • Hi Bex.

    A small grant or hardship fund and finding new ways to thank volunteers are both good ideas. Cash is in short supply right now so I can't promise we can do new things straight away but we are certainly keen to offer more support when we can and we will look into this. A related question is whether there are some products that Asthma UK could buy and sell on at cost, which might lower the price. And thank yous don't need to cost money, or much money in the case of Gala Dinner tickets. Having some volunteers there would also help us get the message across that asthma is serious and the charity needs to be supported.

  • Thank you for your reply Neil, here is a thought how about add £5 onto the ticket price of gala dinners to pay for the food and approach big companies to ask them to sponsor an award. I know asthma is not a ""trendy charity"" all too often it is seen as a blue inhaler illness. As I type this within my protocol I am using a nebuliser at least every 2 hours, this year was the 1st year in 4 that my boys all 3 of them born in October had me home for their birthdays. When I asked my youngest if he was pleased with his present he said he was just happy I was home, that is in no small measure down to the RBH. I would also like to see some of the people who work tirelessly for us rewarded. The ANS at the RBH who has seen me go through every emotion possible and has been my rock I don't know how she does it, I know I am not the easiest patient in the world I hate change but the relationship built up with her and my Consultant has made such a difference to me. I want to shout from the rooftops how good they are. I want to see them rewarded for the time and effort they put in. But I don't know how except to thank them each and every admission.

    I also have people on here who have kept me smiling with daft texts, cards and little presents during long and difficult admissions. We need to make people realise asthma can be really seriously disabling for some people. Just look at the thread about Jasmine someone who ""only"" had mild asthma but who suddenly and tragically died in september.

    I get so annoyed when I hear the heart foundation spent 4 million changing their logo, the RLNI who could stop fund raising today and keep going for the next 20 years. We need to look at how we get our message across, maybe asking business to support a television ad campaign or a poster campaign we need to rub peoples noses in the fact that people die every day from asthma more people die of asthma each day than of CF, more people die of asthma each day than die of individual cancers (obviously cancers grouped together scews the numbers) yet people still think 2 puffs on a blue inhaler and it will all go away.


    sorry Neil you have caught me on 2 of my pet rants igornace and awards

  • Oh and please get the TV companies to actually talk to people with asthma on how it looks and feels to have a big attack so when they crop up on casualty etc I am not left cringing.

  • Ignorance and awards are important subjects! On awards, we did run a travel award scheme this year for people to attend the main European respiratory conference (in Vienna, paid for by MSD). This meant that ANSs and PhD students working on asthma could attend a conference they otherwise would have missed. We have been talking about awards for healthcare professionals and maybe in 2010 we will have one to announce. Thanks for the encouragement to pursue this. On ignorance - that's a big subject and one we work hard on. It's also a major concern of our Users and Carers Forum and as you say of mums who have lost children to asthma without reaslising it could be serious. Talking to TV drama companies is a good idea. And maybe if a TV show portrays asthma badly we can organise an email protest, so the broadcaster will notice. We can't afford an advertising campaign unless a business pays for it (which is worth exploring, certainly as we pull out of recession) but there are cost effective ways of getting our message across, through newspapers and TV, GP surgeries and hospitals and increasingly through Facebook and sites like this. We recognise the need to work harder and imaginately on this.

  • Hi Neil,

    Bex has made some important points regarding the severe end of the asthma spectrum and the importance of getting the message across that asthma can kill. Going to the other end of the spectrum, one of my main ""hobby horses"" is impressing on people that an asthma diagnosis does not mean that they have to restrict their lives or miss out on activities and hobbies. All too often I come across people that are either afraid to try physical activity because of their asthma, or ""accept"" a poor level of asthma control, with daily symptoms and interruptions to activities, because they feel that is what asthma ""is"". As well as getting the message across that asthma can be serious, we really need to also push the point that most asthma can be very well controlled with the right medication and positive approach.

    <dismounts from hobby horse> ;-)


  • It's a difficult balancing act. We do need everyone to take asthma seriously, and I'm conscious that a big proportion of the (few) people who die every year have what appears to be mild asthma. But the focus you suggest cathbear is exactly what we have been doing in schools through the follow up work to Missing Out, published on WAD. This reflects the fact that many young people told us they were barred from sport at school because they had asthma. Most recently members of our Youth Forum and other young people got this message across at events in school showcased in parliament. We do want people to know that for most people asthma should be no barrier to a full and active life. I think there is a big opportunity coming in 2012 with the Olympics when, we hope, some of our gold medal contenders will have asthma. The message I guess is take it seriously, but don't let it hold you back.

  • Maybe asthma UK should focus on people at the more severe end of the scale, looking at the achievements of people with severe asthma to highlight this, rather than looking at olympic gold medalists.

    Edited to say:

    And in reply to Bex's thing about TV companies- Monday's episode of doctors was a bit of a farce- i for one don't roll around the floor when i'm having an asthma attack!

  • I remember watching Ben Foggle on extreme dreams and thinking he should try to take a group of atopic brittles for a walk across the park :)

  • We do need to do more for people with severe asthma and are talking to people about that at the moment. However we do need to serve the wide asthma population too. As I said before, a big proportion of asthma deaths each year are among people with mild asthma, and their families rightly expect us to do more to prevent this. And the majority of people with asthma tell us that they are poorly controlled, which partly explains the high number of emergency asthma hospital admissions that occur each year.

    Re: ambassadors, I agree. Paula Radcliffe and Paul Scholes are helpful ambassadors but the best role models are the young people and adults with asthma who battle with the condition, have ups and downs and achieve fantastic things on their own terms - many of whom, of course, are SUFAs

  • one other area that needs adressing is to ensure there are more tertiary centres for people with difficult asthma. Here in Devon it is the RBH, Southampton or Heartlands all of which are to quote an aviva advery ""long old poke"" we often here on the local news about mr x who is 70 having to go to London for treatment I have never seen on the news that an asthmatic has to travel for hours to get specialist treatment. I am currently treated by the RBH there is the hope that a new consult at Derriford will take up the specialist centre for difficult asthmatics I am hoping to see him soon but it is looking like it will shared care not the specialist centre the southwest needs.


    sorry to grumble on things keep randomly popping into my mind...

  • one other area that needs adressing is to ensure there are more tertiary centres for people with difficult asthma. Here in Devon it is the RBH, Southampton or Heartlands all of which are to quote an aviva advery ""long old poke"" we often here on the local news about mr x who is 70 having to go to London for treatment I have never seen on the news that an asthmatic has to travel for hours to get specialist treatment. I am currently treated by the RBH there is the hope that a new consult at Derriford will take up the specialist centre for difficult asthmatics I am hoping to see him soon but it is looking like it will shared care not the specialist centre the southwest needs.


    sorry to grumble on things keep randomly popping into my mind...

  • Hvaing read this I agree with alot of what has been said. I think although sports people with asthma are great role models they do not reflect how life day to day with asthma. You dont see them taking inhalers etc and no one really understands how it effects them.

    The number of people who think asthma is just a blue inhaler and a couple of puffs will sort everything is astonishing. I think this needs to be adressed. You dont want to go scaring people about how severe asthma can be but at the same time the image that asthma is jsut a blue inhaler thing need to be changed.

    For me personally I dont think either spectrum of asthma should be focused on but i think there needs to be better education about asthma if possible. I think particulary those who have recently been diagnosed with asthma.

    Although the forum here at AUK is great and offered me a huge amount of support over the years there are alot of asthamitcs at the severe end of the scale and I think this may lead to misconceptions amoung those who ahve recently been diagnosed with asthma and their thinking that because they ahve asthma it is a life sentance which for some people with asthma it unfortunatly is.

    I have brittle asthma and have done things I would never have done and often surprised myself at doing and often maybe using case studies like that may help.

    i think I ahve waffled a bit.


  • Sorry jsut want to say I agree witht he whole issue of how asthma is portrayed on the TV in programmes.

    I think they need to do a little more research into asthma before showing people having asthma attacks and how they treat them on the TV. I have often been left with my blood boiling after watching programmes such as Doctors, Holby City and Casualty who have all shown someone having an asthma attack and none of them have portrayed it in the right way and how it is.

    I think alot of people will actually take note of how the attack is treated and may even recall it in a real life situation which is very dangerous.

    Alot of what peopel learn now is from TV and is not aleays accurate.


  • AUK has done fantastic work in schools and with children and young people - this does filter back and we hear success stories, particularly from people on these message boards about how good schools can be (there are still some ""black holes"" but I'm sure these will be dealt with in the fullness of time!) - so this important work clearly needs to continue. I'm also keen to target education at adults, too - they will be the parents looking after the children with asthma (and hence need the education re: meds, activities, etc to perpetuate what the children are learning), but they are also the asthma sufferers who tend to ""put up and shut up"" about their asthma symptoms. I'm not sure of the best way to target this group is perhaps obvious to say ""via health care consultations"", but again, these are the very people who don't often (if ever!) attend for routine health care, or even for other health care consultations. Tricky one.

  • Thank you Neil for listening. One final thing that has just come up as I am talking to my son, my children plan things around making sure someone is at home with Mum all but the youngest are out of the young carers schemes. One son deferred a place at uni to be at home for me I think more support for carers young and old would be good and they deserve rewards too.

    Sorry for the constant posts I am a mine of untapped information and also strapped to the bed by the family as chest is not so great so I have lots of thinking time.

    Kindest Regards

    Bex (not Neil thank you Ginny for picking that one up goodness only knows what was going through my mind)

  • Hi - sorry just had to pop into a meeting.

    Re tertiary centres, I agree this is something we need to look into. I don't think the specialists agree about what services a 'good severe asthma service' should offer and how many there should be per population area. This is definitely something we are looking at in conjunction with specialist doctors and the Severe Asthma Nurses network. I would agree that people need easier access closer to home and also think there is more scope for telemedicine, particulary seeing consultants.

    Re educating parents, one of the ideas we have had is to develop a category of membership for parents. We are conscious that parents have particular questions and concerns and maybe we could address them more specifically in our information and communications - and possibly find new ways to facilitate peer support of the kind provided on this Forum. What do you think?

    Re TV programmes I am picking up some widespread concern. I think I should write to a few broadcasters quoting some of your comments and asking for a response.

    And finally carers, and young carers. I completely agree that more support and recognition is needed. I hope this will be considered in the current reforms of care and support which are being considered, and certainly I hope individual budgets might give families more control and more options about how that care is provided.

  • How about educate the medical profession, not all asthmatics wheeze. other posts on this hot topic.

  • Looking at the 'Upcoming Absence Review' discussion could more be done to assist people at work and educating employers?

    I've gone through a LOT of stress trying to sort things out at work, although there's probably quite a few jobs I couldn't do I feel I can do my current job with a bit of support and have put forward ideas that weren't going to cost £s.I suspect many others are in the same position as me.

    I've worked with people that have commented that 'asthma isn't life threatening' (why have I been to Casualty 3 times in last year - one visit ended up in a ressuss unit when I developed anaphylaxis as well!)

    DDA have helped me as have the Disability Officer at my local JobCentre but it's hard to find out about these things and it's obvious people are going through so much stress.

  • I agree with woody som - educating medical profession and doing some research in to not all asthmatics wheeze and perhaps looking at why or medical reasons for this.

    See post on no wheeze in some asthmatics.


  • How about some hard hitting campaigns to get more awareness of auk, more publicity for the charity, not many people have heard of Asthma uk. A tv advert like some charities do? We need to change peoples perceptions of asthma its not just a childhood disease or a few puffs of a inhaler. This obviously costs money but it would also make more money for the charity in the long run. More Poster ads for hospitals, doctors surgeries etc, I'm always seeing them for the british lung foundation but never for AUK. Support groups like the blf's breath easy groups, teaching ways on how to deal with asthma, treatments etc.

  • Good points here.

    Plumie - I understand your point about wheezing/ non wheezing and promise to look into it in more detail. I know it has come up in our research team. I will report back.

    Lucy007 - I do recognise that employment is a key area. We have assisted people who have made complaints that disability benefit fitness for work interviews have been badly conducted and this has resulted in positive change. If we had the money (ie I hope at a future point) we might introduce an advocacy officer here who could help people make complaints or appeals. However, I don't know about the Upcoming Absence Review - can you tell me more?

    Clare22 - We did a DRTV campaign a couple of years ago that worked pretty well but these things do cost more to run initially than they raise in revenue (as you say, the revenue comes in future years) and money has been too tight this year to go down that route. Posters are easier and we do have some (there is one in my local surgery) but maybe we need a fresh mailing, as I'm not sure how long they stay up for. Your point about awareness is well made and shared by our Users and Carers Forum.


  • Haven't had time to add anything here until today, so here are my points, in no particular order!

    Picking up on Cathbear's point about achievable control, I think there can be a real problem with low expectations of what is achievable (for most people, not all) which might be leading people to put up with symptoms limiting their lives. There does seem to be a move recently to define asthma more in terms of control rather than severity but there are still too many people experiencing suboptimal care and control as evidenced by the recent asthma admissions data reported on this site (cf this recent article from Mayo Clinic ""Toward the optimal control of asthma"" - l - space added). Perhaps Asthma UK could produce some kind of patient information sheet describing what constitutes optimal control and what one should expect from an asthma consultation or review, including what questions might be useful to ask?

    Regarding improving the quality of local primary care, something to consider might be to list those PCTs without a respiratory lead and then ask the membership to write to their MPs and PCT leadership about this. I read recently that one third of PCTs reportedly have no respiratory lead, which is concerning, especially as many are scrutinising asthma prescribing - e

    On the issue of allergy and asthma, Asthma UK does promote awareness that asthma in many people, especially children, is an allergic condition and can co-exist with other disorders such as allergic rhinitis, eczema etc. Many patients are not sure when they should ask for referral for specialist advice for these related conditions and are not aware that more integrated allergy management can mean better asthma control, so perhaps specific advice about this would be helpful. There is a problem in the UK with access to specialist allergy services, something which Asthma UK has highlighted, and it is good to see Asthma UK supporting efforts to improve this situation.

    Something that has struck me recently is talking to people who have assumed that Asthma UK is only for people with severe asthma and who are not aware that 'mild to moderate' asthma can also, occasionally, be deadly. It would be ideal if every GP surgery encouraged their asthma patients to contact Asthma UK for more information but I'm not sure how one goes about achieving this!

  • Just a quick contribution...

    One of my church friend's sister died last week. He said today it was from asthma. As far as I am aware, she wasn't severe but the attack was very accute and sadly fatal. My friend is very shocked by it all. This really brought it home to me how mild asthmatics can and do die. I have lost many friends to asthma. Most were severe / brittle but this one has shaken me again, even though I didn't know his sister.

    AUK really need to do a massive campaign to reach all aspects of media and everyone in the UK to emphasise that asthma can be devastating. People need to know it isn't just a little blue inhaler!


  • I'd like a lot more assistance for those of us who end up with Occupational Asthma. I went into work a 'normal healthy' person and left with hypersensitivity. The advice I got from the respiratory specialist was 'keep taking the steriods and find another job. You'll probably get slowly better over time (10 years!) and apply for Industrial Injury Benefit'. My income dropped from a full-time salary of £33,000 to £120 per month IIB. The job centre could not offer me re-training, their advice was that I was now unemployable and should start my own business. Other countries offer a lot more support, including payment of your previous salary for a couple of years while you adjust to living with a chronic illness and re-train.

  • I have found the comments on this thread really helpful - we must have this kind of conversation more often.

    Re occupational asthma, we launched a campaign last year called Business Against Asthma which we targeted at SMEs in industries linked to occupational asthma risks. It has started small but we have some local successes and will be hoping it grows. We also have the Health and Safety Executive visiting us Friday for their asthma board meeting, and I will pass on your comments and questions.

    Re asthma deaths, we are starting up a support group for people who have been bereaved by asthma. Am happy to supply details or answer any individual messages, for those who might have an interest. Please do pass the news on.

  • Regarding spreading the message(s) about asthma as widely as possible, I think making Asthma Magazine available to non-members (by subscription) is a good move. It would be good to see it available in public venues such as libraries, council offices, gyms & leisure centres and GP surgeries.

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