Mental health illnesses are not geographically specific, not by region or by country. Depression in the UK is the same as in Australia, Anxiety is the same in USA as it is in Poland. the social and biological paths that lead to these illnesses may vary but the result is the same, tens of thousands around the globe all at different points on their path.
Since my last break I have embraced my illness (what ever it is) and started to learn about it. Not the specifics of each illness more how people are handling their illness. To try to get a better idea I conducted a quick 10 question survey, the survey is flawed before the trolls come out and is only to confirm a theory I had. It was posted on mental health forums and Social media, I got a sample of 66 replies. Here is how I break it down
Q1. How long have you lived with a mental health Problem
Okay I first wanted to ascertain how long my subjects has been dealing with mental health issues, a the results surprised me in two ways, firstly I suppose I expected a higher number the higher the timescale. Admittedly those suffering over 10 years do make up the largest group but I expected the 5 and 10 year figures to be reversed. So from my first question I learned two things:
1) That due to the large number of subjects stating that they have had a mental illness for over 10 years confirms that we are dealing with a branch of medicine that requires care over an extended period of time (or my sample selection just happened to have been done more by this sector of the MH populus.
2) Not one person stated that they had been recently diagnosed with a mental health illness in the last month. and only 6% in the last year. Now we know that the numbers of people being diagnosed is getting higher and yet these figures do not seem to reflect that, why?
Q2. When you first sought medical help did you find the information given:
What I was looking for with this question was how much information about mental illness was being given. Now allowing for the high number that we know have had mental illness over 10 years and accepting that information is supposed to be more available now,it was still concerning to see that those who felt they received very complete and reassuring information if a bit complex was 11% compared to those who said they were given no real information or just given medication and come back in a week or so 66%. Now I will stress that the purpose of this is not to in any way put blame on the NHS or other medical providers, I just want you to see a hole that’s forming and then read my suggestion. Again just taking the fact that information given was a bit vague or no real information is over 50% of the survey I think it highlights a lack of information from day one.
Q3.In the initial weeks after you sought help did you feel:
To me this is the scariest of all the questions I asked and the results are hard to believe but easy to understand. 6% felt fully supported, 8% felt they had some support and phone numbers, 52% felt a bit lost and alone and 29% felt totally isolated. So for the first few weeks after being diagnosed with a mental illness 81% of those surveyed felt lost, alone or isolated. Yes I know there are many variables not factored into this survey which might explain this away but lets not explain things away, let these figures stand a while because if you have suffered mental health problems I’m better you’re not that surprised. I intend this article to be ridiculed and ripped apart but it will serve a purpose and if I help with a spark then I will be happy
Q4. Did/do you use the internet to find out more about your illness and mental health?
This question was asked to see if people were self-seeking the information regarding their illness, Dr Google is always open for business and there is a lot of information about mental illness right there at a click of a button in fact, there can be a little bit too much information on mental illness, we have all read the piece of paper inside the medication packet and thought “are these to kill me or cure me”. As you can see 39% resorted to finding out information about their illness from the internet A LOT. 29% sometimes, 15% a little and 17% never. So I think it is same to assume that those who felt they did not get any information after diagnosis went online and who can blame them, I did.
Q5. Do you use social media sites to communicate with other sufferers and those who support mental health?
So I have identified that people are getting information about their illness from online but what about support? Knowing you have an illness is one thing but having support through it is just as important but here I was surprised. 60% said that they rarely or never used social media or mental health support groups for help. In actual numbers that is 39 people, now they may have a very good support network at home or they may not feel comfortable talking about their illness online with strangers. Or they may not be aware that such support networks exist. My gut (I am not a scientist so gut feeling is allowed) tells me that most of these people don’t use these site because the are afraid enough already and don’t want anymore pressure.
Q6. Do you use forums for mental health sites to seek answers to your illness/symptoms?
I have the pleasure of being a member of several forums http://www.patient.info being one of the busiest of these with hundreds of posts daily from people seeking help and reassurance about mental health issues. So imagine my surprise when only 12% said they used forums all the time, then it occurred to me and no offence to my 12% that high use and never should be treated as outside parameters. That leaves 56% who sometimes or not very often use them, this seems a likely figure. the 32% who never use them are they 60% that don’t use social media? are they aware of these forums? are they comfortable writing about thoughts and feelings that could be mocked or ridiculed. I know I am a tad unique in that I spill out all my heart and soul but I do accept that I am one of a few who are ‘truly’ open. Then maybe they have no need for forums, again maybe they have a good support network.
Q7. Do you go on social media/forums to offer advice and support to other sufferers?
As I have mentioned I do not just blog about my illness I also go on forums to offer support and encouragement to those that need it. I do not offer medical advice as I am not trained but I have enough empathy and first hand experience to try to lift someones spirit and offer ways that they might help themselves. This survey was in part inspired by this. I also have quite a nice little Twitter community based around mental health where I learn and help (sometimes get told to get stuffed lol) others. So I was happy to see that 39% sometimes or often do likewise. for the 61% who do not I also understand but for me it’s the 39% that is important here. 26 people who give their time to help others.
Q8. Have you had any medical training/ counselling skills
Now here is the question I most wanted to see the answers to and you will see a bit later why. but I think in itself it tells a big story all on its own. 83% say that they have no formal training but offer support from experience. That is a lot of people willing to help other with just their experience of living with mental illness to guide them. Now please do not get me wrong I am in no way advocating that just having experience of mental illness in any way gives you a better understanding of mental illness than those who have studied it. What I am saying is that there are a lot of people who help because they understand what someone is going through.
Q9. I would be interested in learning more about mental health and how to help others
Here is why the answer to number 8 got me excited, 93% of those surveyed (guessing the five who said no are the five who already have the knowledge already) said that they would be interested in learning more about mental health and helping others. That’s a lot of people wanting to help. It also helps me because all these nine questions kind of back up an idea I have been rattling around my brain for the past few weeks.
A Little Idea
I am not going to write a chapter and verse here, only a simple outline. Firstly the simple survey identifies that people do not seem to be getting information at the time of diagnosis so what if we had a unbrella ‘organisation’ that would be a name, site and basically links to the best forums, sites of information etc that can be given to every doctor, nurse, therapist, etc, etc. So that people newly diagnosed are not only getting the ‘best’ forums, ‘best’ information but also info such as hashtags that will get them the attention they need to get noticed on twitter and other sites. links to blogs etc. This was every website gets the referrals but the GPs and medical profession get a single name to give out.
How hard would it be to set up an online learning system that would be able to give those sufferers who are willing to help others basic training such as MHFA, ASIST. Yes I know these courses are run and you can do them if you fork out the £120 quid for each but we have seen from the stats above that there are a lot of people who already help others and a lot more interested to learn. Forget for a moment these people are patients think of them as volunteers who might be able to use their experience and a bit of training to help people. i’m sure most forums would happily accept people who are able to make their forum safer and more informed.
Now I’m pushing my luck but if you are aware of the First Responder program run by the NHS, also the PCSO system run by the police, is it to much of a leap to train volunteer MHCR Mental Health Community Responders, who would be available to assist in the field. Take the 40% of police time dealing with mental health issues, or those with mental health issues who find themselves in trouble with the police and need an advocate to help them. Those people who need someone because they find themselves in hospital and also need a reassuring voice to speak on their behalf. Okay maybe im reaching for the sky here but if any of this makes sense and with millions of every possible kind of person who could make it happen on social media, where is the harm in giving it some thought.