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:
- 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.
- To put ourselves in the shoes of our patients and develop a greater level of empathy so to become better clinicians.
- 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.
- 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!
- 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.
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
