Karen Posted December 16, 2008 Share Posted December 16, 2008 The following request has been submitted by Stephanie Blott... Hi, My name's Stephanie and I wondered if you may be able to help me. I'm working with the Department of Health to launch a national media campaign to raise awareness of stroke. The campaign will be launched in February 2009 and and will consist of various TV, radio, Internet and newspaper adverts. To help support the campaign and publicise its message, I am looking for stroke survivors who would be happy to talk to journalists about their experience. I was deeply touched by the enormous depth of bravery shown by all of you who have posted your stories on behindthegray.com and I think the general public will be too, thus helping to raise awareness of stroke. I very much look forward to hearing from you. Best wishes, Stephanie stephanieblott@luther.co.uk 0207 6189174 Quote Link to comment Share on other sites More sharing options...
charty Posted December 17, 2008 Share Posted December 17, 2008 Hi Karen I have replyed to Stephanie, in case she wants to get in touch Caroline Quote Link to comment Share on other sites More sharing options...
Vivien Posted December 17, 2008 Share Posted December 17, 2008 Is an SAH a stroke? Quote Link to comment Share on other sites More sharing options...
Karen Posted December 17, 2008 Author Share Posted December 17, 2008 Thanks Caroline! x Vivien, yes a SAH is a haemorrhagic stroke ...... click on the following page link http://news.bbc.co.uk/1/hi/health/medic ... 764071.stm Love K x Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted December 17, 2008 Share Posted December 17, 2008 I replied too- I sent her an email yesterday. Laura xx Quote Link to comment Share on other sites More sharing options...
Skippy Posted December 18, 2008 Share Posted December 18, 2008 Hey there Me too - replied to her yesterday Sami xxx Quote Link to comment Share on other sites More sharing options...
Karen Posted December 19, 2008 Author Share Posted December 19, 2008 Thanks for letting me know who's volunteered. I have been given assurances by Stephanie, that whoever takes part, will be treated with the absolute respect and dignity that they deserve. Quote Link to comment Share on other sites More sharing options...
lynn Posted December 19, 2008 Share Posted December 19, 2008 I replied as well Luv Lynn xx Quote Link to comment Share on other sites More sharing options...
michelle C Posted December 19, 2008 Share Posted December 19, 2008 Hi i have just seen this and i have replied to Caroline. Michelle xxxxxxxxxxxxxxxxxxxx Quote Link to comment Share on other sites More sharing options...
Lauren D Posted December 29, 2008 Share Posted December 29, 2008 Hi Karen I've also sent a reply and would be only too glad to assist. Doing the voluntary work with the BSF has been of enormous help in my recovery and I am probably much more confident in some areas now than I would've been prior the SAH. Can you add to my name that I had SAH July 2004 coiled and 2nd coiling April 2006? Best wishes Lauren Quote Link to comment Share on other sites More sharing options...
prudence Posted December 29, 2008 Share Posted December 29, 2008 I have just sent an e mail as well,just hope this will help other people. Quote Link to comment Share on other sites More sharing options...
Guest sarah c Posted January 6, 2009 Share Posted January 6, 2009 Hi Karen, I have replied by email to Stephanie, I think it is a very good idea to have alot more awareness of Strokes.xx Quote Link to comment Share on other sites More sharing options...
Guest yasmin Posted January 13, 2009 Share Posted January 13, 2009 Karen I have had an email from Stephanie with a questionaire to complete on strokes I'm not sure if it applies to me though? have you seen the questionaire? Yasmin x Quote Link to comment Share on other sites More sharing options...
Karen Posted January 14, 2009 Author Share Posted January 14, 2009 Hi Yasmin, No, I haven't seen it ...... but have a feeling that for some people, the questions may not apply. If you would like to email me a copy Yasmin, then I'll have a look.... xx Quote Link to comment Share on other sites More sharing options...
Lauren D Posted January 14, 2009 Share Posted January 14, 2009 Hi Yasmin I've had one and completed it. The NHS are promoting the FAST campaign - FACE ARM SPEECH Time to call 999 - so that people recognise stroke symptoms. I've included my symptoms which were classic sudden onset headache in the brain when I felt the annie burst and I went weak all over and found it hard to talk, neck pain, sick etc. etc. so I've no idea how they will reconcile that with this campaign as it's more about the other type of stroke. But we'll see because it would be good if they can raise awareness of SAH along the way. There was an article in yesterday's Mail about it in the Health Section. Best wishes Lauren n Quote Link to comment Share on other sites More sharing options...
Karen Posted January 14, 2009 Author Share Posted January 14, 2009 Hi Lauren, I've just read the article on the Daily Mail website, many thanks ...... so here's the page link if anybody wants to have a read http://www.dailymail.co.uk/health/chat/ ... signs.html I agree Lauren, it's great to raise awareness of stroke, but it never seems to include a stroke that's been caused by a bleed or hi-light the classic symptoms of severe headache and neck stiffness etc ...... if you ask most people what causes a stroke, they will say blood clot ..... they're surprised to learn that a stroke can also be caused by a bleed.... like many people on this website are also shocked to discover that their SAH is a type of stroke..... Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted January 14, 2009 Share Posted January 14, 2009 Hi all, I had a questionnaire to complete too and told Stephanie that the FAST campaign would not have helped because of our symptoms but that an SAH is a type of stroke and they need to promote that too! Hope they do Laura xx Quote Link to comment Share on other sites More sharing options...
Lauren D Posted January 15, 2009 Share Posted January 15, 2009 Hi all I've spoken with Stephanie and she said they want to include SAHers in this although I'm not sure how we can possibly fit in with the FAST campaign and am rather expecting that we will not get ourselves heard for this reason. My sister the practice nurse told me that SAH wasn't a stroke was adamant I should've been over it within about 6 weeks and the rest was a put on (in spite of second coiling 18 mo later!) so it's particularly close to my heart that this campaign should include us, also for people to realise how devastating it is, how long it takes to recover, and that it's not so infrequent and the longer term consequences of not being treated asap mean there is still a very high mortality rate of 50:50 which is much higher here than in any other European country. Anyhow I'm meeting up with the BSF team tonight at Emirates and see if I can find out any more. The agency seems very good to all purposes but they have to follow the NHS brief. If anyone hears from Stephanie further can you post on here? Lauren Quote Link to comment Share on other sites More sharing options...
Karen Posted January 15, 2009 Author Share Posted January 15, 2009 Will do, Lauren xx Quote Link to comment Share on other sites More sharing options...
perrycornish Posted January 15, 2009 Share Posted January 15, 2009 Karen, Lauren, Laura and all, I have been pondering quite a lot this week and had oddly enough today, come to the conclusion that we should not even try to push too hard to be included in the FAST campaign, but that we should as a group of survivors, raise awareness ourselves of 'how it really is' we could approach a drug company ( don't hit me!) to sponsor a well written and good looking leaflet/booklet. In fact most drug companies would I know prefer to be involved at the start of something ( they do not like to be asked to be involved at perhaps the half way mark, I say the drug companies as that is most certainly where the money is! I was, for a short period of my working life, a practice Manager in a large general practice, ( short because it was not my cup of tea if I am honest and they ( the drug companies) were more than willing to spend if it got their name up front! So evidence put together by us as a result of questionnaires, devised by us perhaps ? Is that an idea worth persuing so that our opinions are right up there and included in any booklet which would in turn be issued ( through hospitals etc. to patients and their carers on discharge. A lot of ideas have come forward and who else but us has the experience. As Scott said some time ago, we are now thre 50% who do survive and now need to educate the health professionals. Those are my thoughts to date, what do we all think, especially Scott and Karen ? I will not take hump if you tell me to wise up, I just am not that sort of person. If you think I'm rambling tell me and I will try to clarify!! Let's give it to 'em strongly! Quote Link to comment Share on other sites More sharing options...
rince Posted January 16, 2009 Share Posted January 16, 2009 Hi Perry, I think the idea of a drug company could be a winner, I personally don't have any axe to grind against large corporations. If we approached the "right" company, one that supplies coils or clips, they could help us in more than just production of a leaflet. As they would have contacts with the neuro-centres they could help with the dissemination to the patient as well as into GP surgeries. Part of me doesn't want it to be as rigid as a printed leaflet tho, I want it to be more dynamic and up to date, an adjunct to this website maybe? The other part of me thinks that people won't pay much attention to a website as they would something they can pass on immediately. I don't really know. I've started on this as a project and hope to have something to show you all next week. Scott Quote Link to comment Share on other sites More sharing options...
Karen Posted January 16, 2009 Author Share Posted January 16, 2009 Thanks Perry and Scott, Well, I agree with you both ..... Funding of a leaflet, would be an issue, as BTG isn't a charitable organisation and is literally run on shoe-string funding from the members voluntary donations and dedicated volunteers ... I'm not sure, whether we would get sponsorship from these type of companies ...... charitable status, is something that I have looked at, but know that it would involve a lot more work for me, people, time and red tape ..... I do know, that many other brain/stroke/SAH websites won't provide a link to us, because we're not a charity... there are pro's and con's ..... as the bigger the organisation, then then the longer it seems to take to implement new ideas and I think that some other stroke websites, are a pretty good example of this .... Hopefully, with all of us, putting our heads together ..... we can perhaps come up with something .... I know that I want to expand things on the website ..... so, any suggestions, then I'm more than happy to hear them .... xx Quote Link to comment Share on other sites More sharing options...
Guest yasmin Posted January 16, 2009 Share Posted January 16, 2009 Hi There if there's anything I can do to help let me know, I have already suggested a questionaire for members to complete and am sure that with the industry I am in I would be able to get some help putting it together, as Karen says though its a lot of work and most of the big companies won't want to know I have already spoken to Headway in the past and it all boils down to funding! The people to go to are probably the ones running the stroke awareness campaign at the moment? not really sure though Good luck Yasmin xxxx Quote Link to comment Share on other sites More sharing options...
Karen Posted January 16, 2009 Author Share Posted January 16, 2009 Hi Yasmin, I haven't forgotten about your suggestion of a questionnaire ..... I just need a few minutes to be able to sit down and write out some questions/get focused and see what needs tackling .... as soon as I start, then I will contact you and others that have offered to participate and perhaps we can get the ball rolling and get some ideas down on paper .... if we're going to do it, then all of the angles need to be covered, awareness and the recovery issues, so I would like to get it right the first time .... if that's possible! There are also some good posts/info on the SAH Discussion about recovery issues, info that needs trawling through, pulling together and compiling ..... Lesley (Shanti) has also been in contact with me about that and she said that she was willing to help .....Andy Howland, has also been in contact with me. We need to know what the key recovery issues have been for individual members..... but, this is probably a separate subject to raising awareness of stroke ...... and at the minute, I just haven't had the time to tackle them. However, with the help of the new Moderators on the MB's, I'm hoping that it will free up some of my time from the MB's and website, but need to make sure that everything is running smoothly here and I can take some time off from the MB's to tackle new projects...... and that, will probably take a good couple of weeks..... Keep posting your thoughts guys...... xx Quote Link to comment Share on other sites More sharing options...
perrycornish Posted January 16, 2009 Share Posted January 16, 2009 Scott, it looks as though we ( with you at the grindstone end) could be headed for a mini lift off, after all the donkey work comes in the finding out things Karen, you are so right about setting up as a charity being an awful lot of hard work and red tape. Also charities like Heart and Stroke, Headway etc, have their own major concerns and quite rightly would want to target their own specifics! My vote is still with independence, as we then will have one goal, the raising of awareness and outcomes in SAH. The very thing which Scott has pointed out, quite rightly,that is what is missing to date, on that I think we all agree. Not necessarily as a criticism of how we fared as individuals, but more about the wide variations in care and recognition that are so obvious as we read through various experiences.Karen, Keith and Chris all have enough to do , don't I know it, I have just passed on my website to someone else, and boy am I relieved.No more am I actually tied to my computer ( know the feeling Karen? ) Scott has said he is willing as have others I too would not go back to work ( at least it is pretty unlikely, I'll be 70 soon but I still have a brain cell or two which actually communicate with the other ones ! I am sure that everyone agrees we need a cohesive, united front though and something half way coherent to give to possible funders. Tough Roads ahead! But then we all know what a tough road is like I agree Yasmin that if as you are in Market Research, your organisation could play an important early part in finding the levels of awareness which would be very valuable! Scott I too am quite happy to work with large organisations, it won't be a first for me and to an extent I do know how they tick. Karen it looks as though there is a great deal of willingness, so you should be able to sit back and just throw in the odd comment and maybe keep all the team on track lol Karen, you posted at the same time as my poor elderly brain was plodding along! I agree with you, but reckon you need to let others do the donkey work, you have enough on your plate! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.