Mash Mission and MPs: A recipe for giving voice.

If you’re on Facebook or Twitter we hope that you have already heard of us. We are a group of eight MSc students from Newcastle University who spent five consecutive days in May, during our last ever week of lectures, eating nothing but pureed food and drinking thickened fluids.

We did this for the following reasons:

1. To raise money for our fantastic SLT-run after-stroke group, Speakeasy; which, like so many of these invaluable groups, receives no funding. Most members of Speakeasy had experienced diet modification following their stroke. Our initial goal was £500.
2. To put ourselves in the shoes of our patients and develop a greater level of empathy so to become better clinicians.
3. To *give voice* in Stroke Awareness Month by raising awareness of dysphagia, stroke and speech and language therapy

As somebody who values outcome measures, for the first time in my life it delights me to admit that I don’t know which of the above was the most successful.

1.  At the time of writing we had raised a whopping £1,175! The speakeasy members, organisers and us students would like to thank everybody who helped us to reach this amount. The money raised will go towards paying members transport fees to group and hopefully contribute to funding the first ever Speakeasy overnight UK trip, which we estimate will cost about £6000. Speakeasy usually relies on one of the SLTs jumping in the North Sea to raise money so hopefully this was some welcome relief for Kathryn!
2.  I would argue that without personally experiencing the restrictions of a modified diet it is impossible to truly comprehend the impact that this has for a patient and their partners/care-givers. We did this in the comfort of our own homes while feeling (initially) physically and mentally healthy. The patient hospital experience will be very different still. Although I tried to eat three meals a day, I was rarely able to finish meals and was sometimes sick following a meal. In five days I lost five pounds, and like other members found my energy and mood decline quickly over this short period: I lost interest in food and having previously described myself as someone who ‘lives to eat’ as opposed to ‘eating to live’, I felt a part of my identity and passion had been lost. In order to try and avoid what I have just described please see the food enjoyment recommendations below.

3. We gained a lot of attention by posting about our campaign and sharing pictures of our food on social media. Discussion was generated about recent, best-evidence in dysphagia.

Some of us rated our meals for aesthetics, taste and quantity eaten. Social media meant that we could expect instant reactions for our posts, and tips were shared online by SLTs, parents and other students that may not otherwise have been shared. E.g., I posted a picture of my juxtaposing bubbly-flat stage 2 beer and within minutes received a tip to ‘add drink to powder slowly: Resource ThickenUp clear is best’ within a couple more minutes another SLT commented ‘also, whisk first to ‘debubble’’. I tried again using the above advice and quicker than you could say ‘thickened beer gets a 3/10 for taste’, I was enjoying my takeaway and, well, drinking my improved beer.

Mash Mission offered valuable opportunities for discussion: one clinician felt able to discuss discrepancies between paediatric and adult dysphagia service provision in her area in that community services are not funded for the former, though needed. The more people engage in these important discussions, the more likely we are as a community of speech and language therapy professionals to generate change.

                Salmon with creamed cabbage and rosti               Me eating a mashed McDonald's

A mashing visit with Ian Mearns, MP

For Stroke awareness month we invited our local MP, Ian Mearns, to visit Speakeasy. Following advice from Derek Munn in the RCSLT national student day, we ensured that we had a clear agenda. Members of the group were invited to bring in their family members for the two hour informal visit and Mr Mearns was sent information regarding Giving Voice and Speakeasy in advance.

Our aims were for Mr Mearns to:

•        Support the Giving Voice Campaign by championing speech and language therapy as a profession amongst colleagues.
•         Become more aware of Speakeasy and of the diversity of communication problems facing people following stroke and the impact this has on the person and their family.
•          Hear views of group members regarding service provision following stroke and what is needed now.

The visit was a great success, all group members and family members had the chance to express their feelings. Mr Mearns stressed that MPs are only able to visit groups if invited: if you are thinking of inviting your local MP to a group you volunteer with, do; They want to be invited!

Each group member was given a pile of flashcards containing certain services, e.g. ‘speech and language therapy’, ‘occupational therapy’. Everybody was asked to rate the service they had received by placing their flashcards on appropriately coloured card: green for good, red for bad. This generated relaxed discussion of important topics and allowed for comparison of experiences at the end of the session. It was also very visual and so easy to deduce at a glance which topics were coming up again and again. Mr Mearns, went around members of the group to chat during this activity; ensuring everybody got their point across.

One topic that emerged was that members and their families felt they needed more psychological support following stroke. Another was that they would have liked Speakeasy to run significantly more often than once a week as for some this was the only group that they visit, or the only environment that they felt able to communicate for now. Mr Mearns took on board the feedback and was able to offer contact details of local services for individual queries. We are hoping to continue working with him for the benefit of Speakeasy and for the Giving Voice Campaign. As well as kindly giving a donation for Mash Mission, Mr Mearns volunteered that he could see himself running a speech and language therapy campaign in the next year; so watch this space!

Food for thought

The Mash Mission is delighted to be voted 'Campaigners of the Month' by the RCSLT’s Speech and Language Therapists' Giving Voice campaign. Many thanks to Aimee Waterworth and Jenn Wood for coming up with this exciting and innovative way to simultaneously fundraise, give voice and increase awareness.

We found that the diet far easier to swallow when around other people who were also on a modified diet: It is less embarrassing if a friend is mashing their food to smithereens alongside you and there is less food envy putting you off your pureed fish pie as your partner chows down on a steak. As far as we could see the concept of a ‘dysphagia club’ doesn’t yet exist in the UK but a group where people on modified diets could share their tips and eat meals out together is one to look into.

Whilst the Mash Mission is over for this year we have already had requests to make it an annual, national, event to raise money and awareness; we would love to hear your views on this and if you would like to be involved. The Facebook and Twitter accounts are still open and though we are hoping to stay clear of pureed food for a while, we would love those sites to continue to generate discussions around dysphagia, modified diets and best evidence.

                                  Some of the lovely speakeasy members, mash mission team and Ian

Follow us on Twitter: @mashmission

Like us on Facebook: https://www.facebook.com/TheMashMission?fref=ts

Useful blog: Dysphagia café: http://dysphagiacafe.com/

Nutricia have some great free recipes for blended food:  http://nutilis.com/recipes/all/category/breakfast these are all available in hardcopy should SLTs wish to contact their local rep.

Reference

Blaise, M. (2009). Mealtime Experiences of Hospitalized Older Patients Requiring a Puree Consistency Diet. University of Montreal: Montreal, QC.

Healthcare Social Media: the return of #Twittergate

Whether you love, hate, or are apathetic towards social media, you will probably agree that it is changing the way in which information is shared and accessed. Healthcare professionals and students alike have cottoned on to the fact that as fun as it is to share funny prank videos and send intragramed (I know – I hate myself too for the anthimeria) photos of their sandwich, social media is a potentially powerful tool which can help further themselves, their profession and patients, e.g. 60% of doctors say social media improves quality of care delivered to patients (hyperlink). Social media has become a well established member of new society; slowly, often reluctantly, academics and professionals join the ranks of millions by signing up and adding their profile pictures to social media sites as they accept social media is in it for the long run.  

For the past week the subject of social media in healthcare (or #HCSM) has fascinated me and I need to tell you why - this ‘need to tell’ probably stems from the social media culture to which I have grown accustom.

A week ago today I was participating in one of my new favourite pastimes; browsing through one of my frequented hashtags, #slpeeps, (the ‘speech and language people’) to see if anyone had posted any current research/videos/resources or had anything interesting to say on Twitter. For the astute amongst you yes this was a Sunday night, and no, I wouldn’t disagree with you considered me worthy of pathos and labelled me 'pathetic'.

It soon became apparent that a new #twittergate row had occurred that day among a few speech and language therapists the other side of the world. I was intrigued, my partner for some reason couldn’t care less. #Twittergate, for those of you who don’t know,  refers back to an argument in October over whether a student had the right to ‘live tweet’ in an academic conference: since the material was not yet published the argument was that it shouldn’t be broadcast to the world (link here).

Back to last week - it seems a speech and language therapist had attended a conference of about a 120 delegates, of the two speech and language therapists there she was the only one live tweeting. Controversy broke out among ‘concerned’ speech and language therapists regarding the ethics of live tweeting at a conference: the speaker’s rights, problems with accuracy and acknowledgment.

Tweeter a: It is disingenuous to say that attribution for words or thoughts is clear in live tweets

And later: Issues with live tweeting are respect for reputations, quality of info, moral rights

Tweeter b: It is quite naive of presenters at any conference to think that tweeters need permission to post something out of context

Tweeter c: I'm going to sanction & encourage [live tweeting] @ my next talk in May

As someone who had never come across live tweeting before (I had only seen a few of the Tweeting Therapist’s live tweets that morning) I could empathise with both sides of the argument. On seeing some of the live tweets that morning I had become excited that I was able to access information from a conference I wasn’t attending the other side of the world and by the fact that the tweeter was not a student SLT but, a fully-fledged SLT; making the information feel a bit more golden-nugget-like. Critical appraisal is integral to my Language Pathology MSc (I am about to begin the final term), I also have an interest in evidence based medicine & practice: of course I wouldn’t take live tweets as gospel, I understand that 140 characters can’t encompass everything that a person has said and can risk being biased or inaccurate however I felt I trusted the source enough to enjoy being fed some information and would follow up any information that interested me by researching myself.  

Perhaps it was trust in my own ability to critically evaluate tweets that lured me into a false sense of security that everybody could and would do the same. I was taken by surprise as I flicked through the intense discussion surrounding the ethics of live tweeting: how and why would anyone be upset with someone for so generously taking the time to share information with us? As I read more from both sides I started to kick myself for not considering the presenter’s perspective: what if someone was to tweet from a lecture that contained unpublished material and some evil academic came along and stole a thesis idea? What if a tweeter had some awful history with a presenter and wanted to tarnish their name? Seriously though I suddenly pictured every lecturer, speech and language therapist, teacher, doctor, nurse, my mam and everyone I had ever heard utter the word shouting it: ‘CONFIDENTIALITY!’ Pretty soon I felt uncomfortable about the idea of live tweeting, being from a profession where the notion of confidentiality is so fundamental I guess this isn’t surprising or such a bad thing to consider, however I wanted to get with the times and love it and felt bad for the criticisms that the Tweeting Therapist had experienced.

My own complete ignorance of live tweeting highlighted to me that discomfort about live tweeting was inevitable as it is part of such a new culture: we are not being able to draw from historical social etiquette on how to behave in these circumstances. I added my two pennies worth and sent a tweet to the original Tweeting Therapist saying that it would be helpful for guidelines to be written on Live Tweeting (by the Royal College of Speech and Language Therapists (RCSLT) or, in this case The American Speech-Language and Hearing Association (ASHA)).  A reply quickly shot back:

Tweeting Therapist: are there clear guidelines on what you talk about when you leave a conf?

She really did have a point. At what point had I begun to think that we lived in a society which prohibited freedom of speech; where guidelines needed to be prescribed for what is appropriate reiteration of information? Other people, including her had argued that the information presented in conferences could be talked about or put in a blog following the conference without this kind of controversy; how, they asked, was tweeting any different or worthy of any more condemnation than those forms of information sharing? Tweets were potentially permanent yes, but if I verbally reiterated something I had learnt in a conference then that fact too could potentially be retained by the listener for an indefinite period.

I went to bed unjustifiably excited by the debate and wanting to find out more to be able to form an opinion. It just so happened that Evidence Live, a ([n] excellent) two day conference on evidence based healthcare, was happening the next day (I found that out via a twitter post). The next two days I spent pretty much glued to my phone following the majority of live tweets from the conference, I was so interested and grateful that people were taking the time to tweet: not only personal views, in fact, rarely personal views, instead tweets comprised quotes from speakers, links to papers cited, slides and pictures from the conference, most tweets were very well referenced and some humour shone through too, which added a sense of intimacy. Although it wasn’t as good as being there it definitely felt like the next best thing. The quality of the live tweets, by professionals and students that I knew had an interest in quality data, meant I felt comfortable about the sources (this of course could be abused).

The fact that there were lots of people tweeting meant that information was more easily verified and reliability more easily judged than if fewer people were tweeting creating an argument for the more the merrier. Further, I was able to directly contact participants via tweets and ask them questions, this is something that could never have happened before social media or the live tweeting age. In total 367 participants generated 1,796 tweets meaning an average of 43 tweets per hour reached participants leading to 7.2 million impressions here's the stats. Conclusion: the information from that conference potentially reached A LOT of people, live tweeting from other conferences would have potential to do the same. As The @UKCochranecentr note in their excellent blog on How Social Media has Transformed Academic Conferences, on its second day #evidencelive was trending on Twitter, reaching almost 30,000 accounts by 10.30 that morning.

I was a live tweeting convert, I could see the arguments against it but as far as I was concerned the benefits far outweighed the cons when done correctly. I wasn’t alone; Evidence Live could be seen as the benchmark

Tweeter b: For #SLPeeps not yet in twitter if you want to see how conference tweeting works have a look at #EvidenceLive for medicos ways #Twittergate

Tweeter a: #evidencelive good eg of live tweeting; attribution are clear in the tweets; often tweets are clearly personal opinion

In the day between Evidence Live finishing and the (fantastic) RCSLT Student Study Day taking place I posted a message to the RCSLT's facebook page asking what their stance was on live tweeting. Receiving no response within the short timeframe that ensued I decided that unless we were specifically asked not to live tweet from the student day then I would give Live Tweeting a bash and I would use the tweets I had seen at EvidenceLive as my blueprint. 

I needn’t have worried about the RCSLT’s view towards live tweeting; as we entered the room the hashtag #SLTstudentday was on the opening presentation slide and the chair of the council of speech and language therapists took a photo of the room to put on twitter, we were encouraged to tweet away and my anxieties dispelled, further the benefits of social media carried were discussed in a few talks, one student tweeted

Student 1: so many iphones & ipads, great interactive day

While  

@RCSLT tweeted: Our student day is in full swing! Great participation from our delegates, we're enjoying your twittering! #sltstudentday

Example of one of the pictures I tweeted from RCSLT Student Day

Live tweeting was actually invigorating and I felt more engaged with the talks as a result: I was constantly trying to listen for information that I thought would be the most relevant for students or NQPs that were unable to attend, meaning I remained switched on for longer periods than I think I otherwise could have. I felt that I was doing something useful; not just for my own learning but for others' too. 

Despte best efforts, I did feel myself become slightly bias in that I didn’t want to tweet negative information about the job market without adding in a positive;

e.g. I tweeted:  Things might be more positive for NQP band 5s than they have been in recent years but higher banded jobs effected – Derek Munn

Rather than: band 7 and 8 speech and language therapists becoming disbanded during cuts

Also, I found that as tweets only allow for so few characters I had a tendency to tweet negative information using positive language, as this requires fewer characters e.g.  instead of tweeting ‘he isn’t going to bed before 10’ I would choose to tweet ‘he is going to bed after 10’ to save characters. In some instances this slight linguistic amendment could change the meaning of what is being said, future tweeters and readers should beware of this.

We bought T-shirts to support the @GivingVoice Campaign, then we told the world :)

Live tweeting is an extremely valuable tool that professionals, academics and students can use to their own advantage and to help others. With more NHS services likely to be commissioned in the future it is possible that with other social media tools, live tweeting from conferences will have some influence over what politicians, private companies, and the public see and so should be utilised to its full advantage. If the fact that ‘for every £1 invested in speech and language therapy for children with SLI generates a return of £6.43 in enhanced lifetime earnings’ (RCSLT Matrix report, 2010) was quoted in a conference and lots of speech and language therapists tweeted about it at the same time reaching potentially 7 million people, perhaps more people would be interested in the need for the service to be commissioned.

Guidelines on live tweeting would be helpful so that speech and language therapists can go forth and tweet with confidence in future events where maybe there isn’t such an obvious passion for social media involvement and so that presenters know what to expect when they present their data. The Cochrane collaboration gave some guidelines before their 21^st anniversary symposium and could be used as a guide in the meantime.

Twitter has certainly blurred the lines between private and public, between the role of a speaker and the role of a journalist, however we should use our newfound elevated status of semi-journalist professional to our advantage and to the advantage of the healthcare profession by sharing as much relevant information as possible with colleagues and the public, including in the form of live tweets.

I feel that a lot of the arguments against live tweeting place much of the responsibility on the tweeter when in real life spoken conversation there is far more emphasis on a shared responsibility of giving and receiving information, my opinion is that this should also apply to social media: put simply a reader shouldn’t believe everything they read.

This discussion will no doubt become more complex in following weeks with the implementation of GMC guidelines that if a doctor identifies themselves as such on social media sites then they must also identify themselves by name; therefore losing anonymity when tweeting. This will come into place on 22^nd April 2013. It remains to be seen if the same sort of guidance will be deemed appropriate for Allied Health Professionals.

@NHSsm have weekly chats Weds 8-9pm on how the NHS can use social media to benefit patients and staff

Look out for an #SLPchat in May around the issue of #Twittergate: Live tweeting in conferences.