Sara Ryan is a learning disabilities researcher. She is also a mother. She kept a blog about the joy that her son, Connor, who was affectionately called LB (Laughing Boy) brought into her family's life. Last year, Connor became unwell and was admitted to an assessment and treatment centre. 107 days later he drowned in the bath. He had epilepsy and Sara had noticed an increase in his seizures and alerted staff. But he was allowed to bathe unsupervised. Now her blog is about what Sara is learning since his death.
This is Sara talking about LB and the campaign for #justiceforLB.
Today's post on Sara's blog is about the memo that was circulated the day after Connor's death by the communications department of the health trust, to brief staff about Sara's blog and provide a summary of posts with the aim that it might "help in shaping a tailored media response". Sara obtained this memo today through a Freedom of Information request. It details how Sara's blog had been monitored by the comms team from as soon as they were aware of it in March 2013 shortly after his admission to the unit. It specifically mentions this post in May 2013 just over half way through Connor's admission, where Sara described her distress at realising that Connor had a seizure but not being able to convince the staff that this was the case. Last week Sara was told by the Chairman of the Board that there had been no monitoring of her blog.
Four years ago there were blog discussions in the UK about the ethics of monitoring social media. There was a particular case of a patient who had had a renal transplant, described here by Dan O'Connor. I made comments here, and in another blog (it was on posterous but hopefully has been rescued and is retrievable elsewhere) that I thought that health organisations should not monitor social media unless they had clear policies agreed by staff throughout the organisation on what they would do in various scenarios, including if a matter came to attention which needed clinical input. I think that Sara's post in May describing Connor's seizure is such a post.
If a health organisation is monitoring social media they should consider in whose interests they are undertaking this monitoring and how they will respond to posts like Sara's.
Connor's death was a tragedy. As the independent report into his death found, it was preventable. This should never happen again.
Link: An excellent post by Tim Turner on the data protection aspect of this social media monitoring.
Thursday, 9 October 2014
Wednesday, 8 October 2014
Learned that because doctors and medstudents don't wear uniform in UK, you can identify one from t'other by stethoscope position. Who knew?!
— AnneMarie Cunningham (@amcunningham) October 8, 2014
I'm quite fascinated by the culture around what different health professionals wear in hospital, and also what different health professionals wear around campus. In the UK, medical students do not wear uniforms on placements; they wear their own clothes. They no longer wear white coats. When I was a medical student I am sure we were identifiable on wards by our ill-fitting white coats, before anyone saw our university name badges.
Cardiff University medical students are given lanyards to hold their university IDs, and I heard recently that there may be an unwritten rule that this lanyard should not be worn around campus... or people might just think you were showing off.
Of course doctors in the UK don't wear white coats now either, so fitting vs not fitting white coats are not a way to quickly visually distinguish doctors from medical students. Instead, I learnt today that the position of your stethoscope is now an unwritten rule about your seniority in the medical profession. Some (doctors and students) think that only doctors should wear stethoscopes around their necks. Some have even suggested that the unwritten rule might be that you shouldn't wear a stethoscope around your neck until you are a little bit further up the ranks... maybe having passed professional exams! Even more curious, there is a rumour that this unofficial way of distinguishing medical students from doctors may be sabotaged by infection control guidance preventing ANYONE from wearing a stethoscope round their neck.
It's also worth noting that from a patient's perspective just knowing someone is a doctor is not enough.
@amcunningham Stethoscope meant DR, but emergency med, or general med, or cardiology, or haematology? When parked/oncology ward? Confusing.We need to remember to always say #hellomynameis and explain who we are and why we are talking to the patient on this occasion.
— Tricia Murphy-Black (@Pogster) October 8, 2014
So I was wondering... should it be easier to identify medical students? Should doctors and medical students wear uniforms too? How do patients visually distinguish medical students from doctors, as I'm sure they are pretty unlikely to know these rules, and does it matter? And has the significance of stethoscopes to doctors in the UK gone up as they've stopped wearing white coats?
Edit : Some doctors in the UK do wear uniform! @sally_bobs is a respiratory consultant in Chesterfield. All doctors and medical students in @royalhospital wear navy scrubs which indicate if they are consultants.
— HellomynameisSally (@sally_bobs) October 8, 2014
And ENT consultant, John McGarva, @IamChirurgicus, even designed his own which highlights his specialty.
@amcunningham @sally_bobs I unilaterally invented my own when moved to new build. Saves hassle but am yet to see copy pic.twitter.com/0qFpmJ8jk5More about the importance of the lanyard... some have colour coding to distinguish role. In this particular case they were brought in to help distinguish staff at the time of a cardiac arrest. But interestingly lanyards are seen as an infection control risk in some trusts as well.
— John McGarva (@IamChirurgicus) October 8, 2014
.@e_hothersall @amcunningham So do we (& colour coded): dark blue for cons, light blue ST3+, yellow CT1-2, green Fs pic.twitter.com/8TOFTDgSG1
— Philip Pearson (@respirologist) October 8, 2014
Saturday, 4 October 2014
Have you ever been told by a gym to check with your GP first if it is OK to exercise? Wondering how common this is.I asked this because it is reported that gyms ask many people, but particularly those with long-term conditions to get advice from a health professional before starting exercise. The wiki 'GANFYD' (Get a note from your doctor) even has a template letter for GPs to use when gyms seemingly insist on a letter from a GP to say that exercise is safe.
— AnneMarie Cunningham (@amcunningham) October 4, 2014
The above statement is taken from a leaflet published by ExerciseWorks. The leaflet starts by giving advice on how to start exercising but just over half way through is what seems like a disclaimer advising all who are new to exercise to check with a health professional before starting any new exercise activity.
When I asked @exerciseworks why they advised this, because I could find no basis for it, they said that it was 'industry standard' advice.
@amcunningham that's because that is the industry's guidance. I am not risk averse and covered in liability anyway by insurance...I could not establish where this industry standard advice is published but if it becomes available I will publish the link. (edit: thanks to +Lindsay Jordan for directing me to PAR-Q, and info on how its use is suggested by industry training. Note this does not suggest that all people increasing physical activity should see a health professional.) But I am concerned because this not fit with general advice from the NHS or from the Chief Medical Officers of Wales, Scotland, Northern Ireland and England on the safety of exercise. In their document "Start Active, Stay Active' they state that previously inactive people who increase their activity are unlikely to encounter significant risks.
— Exercise Works! (@exerciseworks) October 4, 2014
There is therefore no justification for the advice that all who are new to exercise, or even those with longterm conditions, should see a health professional before starting to increase their activity.
If you want to start exercising follow the advice on the NHS Choices website. Exercise in not risky, but inactivity is. If the fitness industry really is advising that you need to see a health professional before starting exercise they need to catch up with the NHS!
EDIT : The Faculty for Sports and Exercise Medicine discuss risk stratification for exercise in this document but this is not referred to in the CMO guidance. I will attempt to update as I find out more!
@amcunningham @FSEM_UK yes. CMO can't detail all the risk...inactivity is the issue. More support for LTC patients where risk is higher
— Niall Elliott (@dundeesportsmed) October 4, 2014