Stripy Lightbulb - E-learning on ME/CFS - Sally Callow

Sly Saint

Sly Saint

Senior Member (Voting Rights)
This seems to be the result of the crowd funding a while back see thread:

https://www.s4me.info/threads/crowd...with-a-duty-of-care-towards-me-patients.5623/

Stripy Lightbulb CIC’s Managing Director, Sally Callow, is herself an M.E./C.F.S. patient and has 12 years of personal experience of the condition, she has also been an M.E./C.F.S. advocate with her organisation ME Foggy Dog (also now a social enterprise) since 2014.
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Stripy Lightbulb CIC is a registered Community Interest Company that works for the benefit of the M.E./C.F.S. community. We are unique and are taking a fresh approach to tackle the global health crisis.
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What can you expect from the course?
Stripy Lightbulb CIC’s training is an original concept, there is no equivalent worldwide. We are a unique social enterprise that has been created by a person with M.E./C.F.S. for the benefit of the M.E./C.F.S. community.

  • What is M.E./C.F.S? (Including history, context, wider social/economic/political issues):
    • Symptoms;
    • Differences in severity;
    • Diagnosis;
    • Treatment;
  • How you can support M.E./C.F.S. patients;
  • What suitable adjustments can be made?
  • What level of support is appropriate?
  • Why non-disclosure is important;
  • The course contains industry-specific modules;
  • The courses are CPD accredited.
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https://www.stripylightbulb.com/

eta:
More information:
Our e-learning platform launches in March 2018. We will be measuring our impact with course evaluation forms, improvements in support for patients, word of mouth referrals, the amount of surplus we are able to give to ME/CFS research at the end of each tax year, and feedback received from customers and patients.

What help did you have to start your social enterprise?

I am fortunate to have experienced LinkedIn connections to refer to with anything I’m stuck on, Social Enterprise UK and Action Hampshire have been very helpful with creating the framework of the business. I was also a member of the 2017/18 School of Entrepreneurs cohort but had to drop out after 3 months due to the level of energy required to attend the monthly all-day training days. I did learn valuable skills from the 3 sessions I managed to attend though, I also benefitted from part of the grant awarded to me.

How did you decide on what legal form would work best for your business?

I wanted to move away from a charity model, which is what has been used within the ME/CFS community for decades, to see if a business model would work better in terms of creating surplus to go to ME/CFS research. A CIC allows me to work for the benefit of the ME/CFS community, pay myself a reasonable wage, and have a board of directors to keep everything on track.

What’s the best thing about being a social entrepreneur?

The knowledge that you are working for the benefit of a community to bring about change.

What has been your biggest challenge when setting up and running your social enterprise?

Money. Everything costs money! I successfully crowdfunded £2k to cover start-up costs and without that, I would be stuck. There are so many new social enterprises all competing for the same pot of money. I am hoping to be self-funding once the e-learning goes live. I am hoping to avoid having to rely on grants/funding to keep Stripy Lightbulb CIC going.
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http://www.bqlive.co.uk/healthcare-...eur-index-nominee-stripy-lightbulb-cic-34902/

 
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Looking at the website I am still not sure we have that much more information to adequately evaluate what they offer than when the crowd funding was discussed in the thread that @Sly Saint links to above.

We said before it was an interesting idea, it still is; we also asked why it does not appear to link in with the charities and groups already working in this field, it still seems not to; and we said that we needed to have more information for us to be confident of content, which also still seems to be the case.

Glancing at the website there is nothing that I immediately wanted to take issue with, but a number of times I wanted to ask what is the evidence for this statement, is this an over simplification, is this going beyond what we can currently justify?

At present the site is a good at easy access to some main bullet points, but does it have the depth of information and analysis behind it to make that useful start really worth while. It may do but there is no clear indication that it does.

I am left feeling it could in theory be a useful contribution to awareness and training, but worrying about the dangers of focusing on the experience and views of primarily one person. I would be much happier in there were formal links with such as the MEA or to a broader patient community representation in their management structure or oversight system. Historically this is very much an issue for ME where it is not uncommon for individuals to become over evangelical about their own personal 'insights' or for them to have an ideological axe to grind.

My personal experience is that though I might have confidence in my own knowledge, when it is tested by the broader discussion of such as our threads here at S4ME, there are gaps and biases that I was completely unaware of. There is nothing on Stripy Lightbulb site that suggests they have any mechanism for getting broad or balanced assesment or evaluation of their content.
 
I’m sceptical about the value of feedback questionnaires from experience of training evaluation at my old employer and from CFS/me clinic.

ETA. I mean in the sense that training providers tend to use of on the spot “happy sheets”. I recognise the value in evaluation using anonymised surveys some time after the activity. From my old career I know that surveys of how employees feel about various aspects of working in an organisation can be informative So I support the idea of patient surveys too.
 
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Blog
Admit It So That We Can Progress
Aug 21st 2019 Sally Callow

Many of the current problems experienced by the global M.E/C.F.S community are exacerbated by the many medical professionals who might recognise they have behaved appallingly to patients, quite possibly even harmed them, but are too ashamed or embarrassed to admit they got it wrong. As is said in this #StandUpForGigi video.

One medical profession that has recently acknowledged their mistakes and has taken the initiative to do better is physiotherapy, or at least, four physiotherapists have had a lightbulb moment and opted to change their profession for the better. They have formed Physios4ME online and their objective is-

We aim to educate and start conversation to stimulate new ideas in line with a biomedical approach so we can improve physiotherapy treatment for people with ME

It can’t be stressed enough that this is a fresh approach, many physiotherapists work with M.E/C.F.S patients using the NICE guidelines which are focussed on Graded Exercise Therapy and Cognitive Behavioural Therapy (neither of which work for the majority of M.E patients). Many physiotherapists do not recognise M.E/C.F.S to be a neurological condition, even though it was categorised as such by the World Health Organisation in 1969.
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@PhysiosforME

rest of blog here:
https://www.stripylightbulb.com/2019/08/21/admit-it-so-that-we-can-progress/#more-544


anyone have any info on what is included in the training course?
Take a look and sign up today.

Stripylightbulb.com
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Sly Saint said:
Blog
Admit It So That We Can Progress
Aug 21st 2019 Sally Callow


@PhysiosforME

rest of blog here:
https://www.stripylightbulb.com/2019/08/21/admit-it-so-that-we-can-progress/#more-544


anyone have any info on what is included in the training course?
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We have a big meeting coming up with our professional body in a couple of weeks so preparation for that is taking up all our time. We are keen to look at this and the course from the Workwell Foundation in more detail as soon as we can.
 
Don't assuM.E - Educational Talk and Film Screening about M.E/C.F.S
March 11 2020

We are enjoying an amazing start to 2020 after our Managing Director Sally won the Directory of Social Change 'Influencer' award for her work for the M.E/C.F.S community. We now want to highlight the need for education and social change locally.

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Please do come along to our event to learn about how M.E/C.F.S impacts patients and how you can support them within your working environment.

Schedule (Approx):

12.00 - Attendees start arriving

12.15 - Sally talks about what M.E/C.F.S is and why there is a need for education.

12.30 - Film screening of Voices From The Shadows.

13.00 - Q & A with Sally.

13.30 - Event closes

Attendees of the event will be given the opportunity to buy our e-training courses with a 10% discount (off total cost) for a limited time (until Friday 13th March 23.59). Speak to Sally or other Stripy Lightbulb CIC team members at the event for details. As a social enterprise, 50% of our surplus goes to M.E research. By buying our courses you are 'buying social'.

If you are unable to come along but would like to know more about the illness, please take a look at http://voicesfromtheshadowsfilm.co.uk/. It will open your eyes as to the current situation for M.E/C.F.S patients and the need for education.

Thank you to Outside-In for allowing us to use their facilities, we are very grateful.
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Good to see VfTS being used.

@Natalie

eta:
https://www.eventbrite.co.uk/e/dont...ilm-screening-about-mecfs-tickets-96625572689
 
short video of Sally Callows introduction:



(apart from general background info, mostly talked about 'mildly affected' patients ie those still able to work)
 
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