PatientOpinion at ScotWeb2 2009: Mental Health Care Services Online
If there was one area I’m very aware and concerned about in health care, it would definitely be mental health care. I have had various of experiences dealing with mental health issues among students while I was a sub warden and I also have very good friends who suffer from with bipolar disorder and anxiety disorder.
(Disclaimer: The opinions in the introduction on mental illness are expressed by myself based on personal experiences and not based on professional opinions on the subject and does not reflect on everyone who has mental illness. Everyone experiences mental illness differently so these experience may not be the same as others.)
Mental Illness is All Around Us…
If there was one area I’m very aware and concerned about in health care, it would definitely be mental health care. I have had various of experiences dealing with mental health issues among students while I was a sub warden and I also have very good friends who suffer from with bipolar disorder and anxiety disorder. I have also experienced living with people with bulimia, anorexia (who also always used to cut herself to relieve the pain) and was on alot of anti-depressents at the tender age of 20. Its certainly made me more aware of how hard it is to live with a mental illness and what a daunting task everyday life could be for them.
Its Taboo…
Its certainly a subject that we still find very hard to talk about and there seems to be a really poor understanding of what people dealing with mental illnesses are going through. And it takes alot of time and understanding to fully comprehend or even imagine the extent of the impact of depression and pills will have on someone who has a mental illness.
So.. do you have a family or friend with mental illness? Do you think you suffer from mental illness i.e. clinical depression caused by the chemical imbalance in your brain?
These are questions that you’d hope you’d never have to confront with all your life but the truth is, alot of people do suffer from mental illnesses but are too afraid to talk about it as its still considered shameful and taboo to talk about or even admit to. And the problem with this is, when you are not admitting to your problem, you are refusing yourself the right to get help and access to the appropriate mental health care that can save your life.
Its just like any other illness that needs treatment….
People often feel that you can suffer from cancer, diabetes and other illnesses but people often neglect to understand that people who suffer from mental illnesses often possibly look just as healthy as the next person but suffers from serious bouts of depression or anxiety, depending on the type of mental illness.
My personal experience…
It has been quite an extraordinary journey for me these past few years as for some unknown reason which I now consider an invaluable life learning experience, my life seemed to cross paths with alot of people who suffer mental illnesses ranging from bipolar disorder, anxiety disorder to borderline personality disorder. And from being someone who was totally ignorant and unaware about mental illness, I’ve become someone who now understands a little if not alot on what people with mental illnesses go through in their everyday lives. Having mental illness seems like a really lonely path to be on because they feel nobody understands them or nobody can understand the pain they’re going through because its not visible to other people like other illnesses such as heart disease, cancer etc.
Some people may even perceive people with mental illness to be lazy because they might sleep all day but what’s unknown to people is this is mainly due to the pills they have to take that knocks them unconscious for hours to relieve the pain their suffering from and stabilize the chemical imbalance in their brain.
The truth…
The truth is most of the times, even the patient themselves do not understand what is going on and need some clarification on what changes are happening in their bodies, which is usually the aftermath of all the pills they are subjected to. Alot of feedback is needed on the side effects of pills that a patient is taking i.e. some may experience extreme weight gain or weight loss.
And since sometimes the patients are unable to deal with giving feedbacks themselves, family and friends could also seek help online through support groups or forums such as PatientOpinion to give feedback on their progress so the NHS can provide better services. Its definitely not easy to see a loved one suffering from something that is not physically treatable or visible to the normal person. Imagine seeing your loved one in pain and crying for no reason or experiencing an anxiety attack but you can’t do anything to help or react appropriately. That helplessness you feel to help is just a fragment of the pain that the patient feels when going through a difficult time…
PatientOpinion.co.uk presentation by James Munro
PatientOpinion.co.uk at ScotWeb2 2009 from Liz Azyan on Vimeo.
Web feedback for mental health care – Feedback, feedback, feedback…..
So, saying all that, it was great to hear what PatientOpinions was up to in terms of mental health care… its all about feedback, feedback and more feedback people! Delivering a service is hard enough so having instant feedback surely helps to rectify and improve services.
Patients have been giving feedback for a long time….
James started off by explaining that patients have long been giving feedback on the web where patients have been taking pictures of hospital lunches, toilets and all sorts of things. And now patients and staff are twittering, blogging and putting pictures up on flickr.
YOUR STORY CAN CHANGE THE NHS
But what PatientOpinion is doing now is not just providing feedback but taking those stories and taking it to the NHS and have them do something with it and produce change.
– James Munro
A mixed bag of patient opinions….
According to James, about half of the feedback are positive, another third is fairly mixed and a minority is quite strongly critical. PatientOpinion does have a pre-moderator for legal reasons and are able to publish 95% of what they get.
*Check out the examples of mental health services feedback in the slides. There are some positive and some critical feedbacks as well.
With the web, patients can now keep an eye on the services. We the citizens, can provide feedback in a safe way and we can ask service providers what they can do to make the services better.
-James Munro on how the web has changed the dynamics of the patient and service provider relationship.
Liz Azyan is interested in the ways new kinds of social data and technology introduce challenges and opportunities to society. Get involved with Liz’s latest project here.
Comments
Good post – and thanks for quoting me!
I was hoping to watch the video of myself to see what I’d said – but it seems to be private, even if you log into Vimeo.
Can you “unprivate” it, do you think?
James