In early August 2013 I received a letter from my mental health team asking me to get in touch with them within 7 days or they would discharge me.
This letter left me quite frustrated, especially given that I had already been feeling quite let down by my current – new – mental health team. I did not feel that this team was working with me. I did not feel that they were listening to me. I did not feel that they were hearing what I needed.
As I sometimes do I began tweeting some of my thoughts on twitter, and used a hashtag to collate them together. I called this hashtag #dearmentalhealthprofessionals. I then asked other people what they would like to say under the hashtag.
I stressed that it was for both positive and negative feedback. It was about us working with professionals, everyone communicating together, to discover what works and what doesn’t.
The hashtag took off in a way that I never expected. Thousands of tweets were tweeted under it. People tweeted from around the world under the hashtag. People wrote blog posts about the hashtag. I never expected any of this. It was amazing. Victoria Betton kindly compiled two storifies which show tweets under the hashtag – and you can, of course, read them on twitter. It has been over 6 weeks and people are still using the hashtag and I hope that continues.
But what I was thinking might be helpful – in order to allow us to fully learn from the hashtag is a summary of the tweets. Not every tweet, but the main feedback that was raised, under each topic. If you noticed any tweet of yours was not included, this is not intentional. This is a summary of the main points raised. I spent quite a while putting this post together, and had to limit that in the end, but if you feel I missed any important point please do let me know, and I’ll be happy to edit the post.
Firstly, I want to consider:
I was naturally wary of starting the hashtag. I have seen how much good mental health professionals can – and do – do and I certainly did not want the hashtag to be seen as something negative. I wanted it to be seen as something that could help mental health professionals to help service users. I am very grateful that the majority of mental health professionals saw it in this way.
There’s probably no big surprise in this, but the main categories of tweets under the #dearmentalhealthprofessionals were as follows:
- Attention seeking;
- Communication issues – either feedback on listening to patients, or how to speak to them;
- Thoughts on diagnoses / labels
- Feedback on treatments, including medication, therapy and psychiatric hospital
- And while they may have often gotten lost in there…. lots of tweets of gratitude!
I hope that lots of mental health professionals will read this and learn from it. I don’t want anyone to get disheartened before they start reading any further, so let’s have a look at some of the tweets of gratitude first.
|Tweets of gratitude
- When I had a really good mental health professional, I felt like I wasn’t doing all this shit alone. Thank you.
- We appreciate the risks you’re exposed to in caring for our mental health. Thank you we’re grateful to you.
- Thank you for thinking me as a person and not as patient when i was in the general hospital.
- Some of you are doing an AMAZING job:-) Thank you!
- We may moan & gripe about the service, but many of us are grateful for your services & even saving our life!
- I’ve had amazing help from GPs, Psychiatrists, Nurses and Specialist Therapists. Thank you.
- Thank you for saving my life and continuing to help me to save my life.
- Thank you for each time you let me just sit and cry.
- Thank you for not being annoyed at me when I took my anger and frustrations out on you.
- It took a special person to drag me out of my depths…i still owe you!
- Thanks for giving me an outlet where person is forced to listen to me talk about myself for an hour each week.
- Infinitely thankful to those who helped.
- Thank you for having more hope for my recovery than I ever did.
- I’ve had amazing help from psychiatrists, psychologists, occupational therapist, social worker and CPN. Thanks.
- Thank you for providing a safety net when I needed it most. I appreciate your dedication to your profession.
- Thank you Communicare for being so good to me. Without the facility I wouldn’t be here today.
- Sometimes I just don’t have words to describe how much you helped. But you really, really did.
- Sometimes I will hug you because thank you isn’t enough.
- Thank you for refusing to let me die, and for hoping and believing for me until I could hold it for myself.
- Thanks for all you do. I often feel both you & patients are let down by a system that’s out of date & failing.
- Thank you for persisting when all I wanted to do was die. I’m glad I’m alive
- A short phone call to see how I am, when you know I’m struggling really does mean the world to me. Thank you.
- Thank you for being the first person who told me I could become a professional artist if I wanted.
- You saved my life. I’m so grateful.
- Some of you are amazing and saved my life. Thank you so very, very much.
- Without you, I wouldn’t be here, and wouldn’t have been able to even attempt my magazine project. Thank you.
- Thank you for helping me to see a clearer picture when I’ve been unable to see that life can be worth living.
- #DearDBTteam Thank you for your dedication & support to help change my life & recover from #bpd.
- It was you listening to and caring for me that inspired me to want to make a difference to others.
- The ones who helped me saved my life. The only way to thank you is to try do even half that good myself.
- Thanks to the good ones, you’re awesome.
- To the good staff: You saved my life, I’m grateful. You made tough decisions, but most were right. Thank you.
- To all the genuinely compassionate ones out there; thank you. You are a ray of sunshine in a dark place.
- Those of you who make patients feel worth your time and care – thank you. That’s a rare, rare skill.
- You was the only person who could reach me when I was in the loneliest part of my world.
Personally I love how long that list is – and I’m sure I missed many of them. It’s so easy to focus just on the negatives, but there are a lot of amazing mental health professionals, and that has to be recognised.
What I particularly loved was the tweets which thanked the mental health professionals who had saved their patient’s lives. To the professionals who did that, thank you from me too. You should be very proud of who you are and what you do!
To each individual for whom a mental health professional saved your life – I’m glad that they saved your life. I’m glad that you are still here. And I am very glad that you were part of this project.
One of the main reasons behind this project was to give a forum for honest feedback, either:
- Positive feedback so that people know what is working and
- Less positive feedback so that people know what needs to be improved on.
I loved how honest it was, so thank you to all who participated!
One of the topics which people gave feedback on was the term ‘just attention seeking’. Unfortunately it is not just among the general public that people use the term ‘just attention seeking’. It is sometimes used by mental health professionals also.
Personally, I think what’s important is always to look behind the action i.e. attention seeking, and to look at the reason for it – and there is always a reason.
- Largely attention seeking people are actually attention needing. Maybe they just can’t communicate that!
- Kindly take the term ‘just attention seeking’ out of your vocabulary.
- There is no such thing as someone ‘just attention seeking’. Attention seeking is normal. You do it every day,
- What is wrong with attention seeking? Is it a crime to want attention? Where is the big sin?
- Ban ‘attention-seeking’ & ‘manipulative’. People still need help, even if been taught awkward ways of asking.
- Before you suggest going to A&E is attention seeking, have you tried a trip to A&E? Little attention given.
- Asking for help is Hard, don’t make it harder by acting like I’m a nuisance/liar/attention-seeker.
- Don’t assume anything is done with manipulative or attention seeking intent unless you have absolute proof.
- It is not helpful if you accuse me of attention seeking.
- Attention seeking = seeking attention. People seek attention because they need attention. Therefore attention seeking = a real need
These raise some fantastic points, and I love the point about how normal attention seeking is, and how everybody does it.
After all, isn’t that what we are doing through the #DearMentalHealthProfessionals hashtag.
Many tweets related to communication, and it is clear that there are communication issues on both sides.
- I am Not incompetent because I have mental health issues. Please listen to me.
- Listen with your ears and your heart, not a pen and paper.
- You can’t be properly listening to me when you are too busy scribbling down everything I say.
- Don’t ask a question, listen to the answer then write down something else
- Listen & take people seriously. Just because someone’s coherent & composed, it doesn’t mean lack of suffering.
- Listen to what Im actually saying not what u think Im saying-not everyone with the same condition is the same
- Forget several pages of forms and paperwork first give me eye contact and talk to me.
- If you’ve made up your mind before your patient walks into the room, you’re doing it wrong…
- I know we only have an hour, You know we only have an hour – so don’t check the clock every time I pause.
- Don’t give up if people say you’re not listening – really hearing (getting) what someone says is hard.
- Seems to me saddest thing about #DearMentalHealthProfessionals is so many people feel they’re not listened to yet professionals think they’re listening.
- Please listen with an open mind and an open heart, and do not assume we need ‘fixing’.
- Please listen when I’m trying to answer questions. Be patient. It makes it harder when you keep interrupting.
- When I tell you something doesn’t work for me, believe me. I’m not just being difficult.
- Being allowed to email you is very, very helpful.
- When I’m quiet I’m not trying to be difficult, I just need more time & patience from you to draw me out.
Speaking with patients
- Speak to your clients everytime as if for the first time. Dont let the labels close dialogue down. Be creative!
- Don’t ask what’s wrong with someone – ask what happened to them.
- Don’t you dare tell me you understand when you’ve never had my illness.
- Don’t ask questions you feel u already know the answer to.
- Now in recovery I can see what you were saying when ill made sense but I needed it explained differently then.
- What happened today?’ Maybe it was nothing that day, but last year.
- When I tell you ‘I know this is irrational but…’ please don’t respond with ‘don’t be so irrational’.
- Don’t treat me as you would a child. I’m an educated. adult. Can’t we just talk?
- Wish you would ask me questions, so I know what kind of information you are looking for from me.
- ‘Sorry’ – saying that word kills no one, but heals everyone when it’s appropriate to be saying it.
- Please offer feedback when I tell you what is bothering me. it makes me feel weird when you just sit there.
- Please don’t talk to me like I’m six. Or stupid.
- Sometimes a hug means more than any words.
- Admit it if you’ve not got the resources to give me the help I need: better than pretending I don’t need help.
- Sometimes I don’t have the energy to talk. It doesn’t mean that I’m being negative, or not listening..
- Don’t call one of my behaviours ‘melodramatic’ and laugh when I mention it. I’m not here to justify
- Yes I am young, Yes I do have my whole life ahead of me. This statement alone is not helpful and patronising.
- Please recognise that asking me to talk about manic episodes is very difficult and embarrassing, go gently.
- Please don’t cancel our first appointment after your 6 week holiday by text message.
Some really great learning points, particularly emphasising the importance of good listening skills.
In fact, it’s a list that I think could be useful for all of us – mental health professional or not.
Something that often causes mixed opinions is the impact of a diagnosis and the use of labels to describe a person.
- I don’t mind having a label as long as it helps me access support. Don’t let any diagnosis be one of exclusion.
- Just because someone has/does not have a certain label does not mean they deserve help any more/less.
- You have ruined every part of my life with the labels you’ve given me. How do you think that’s been helpful?
- Providing me with accurate diagnosis enabled me to research, help plan my own recovery & find support groups.
- I have been avoiding your labels for the past few years. And I will NOT let you label me with your labels.
- Your label is how you define me. The label is part of me, but I am more than that.
- Withholding my diagnosis because you ‘don’t think it will help me’ is not a good enough reason.
- A person is a person, not just a diagnosis. Please see them for all that they are.
- Please don’t assume every action, phrase, hair colour, dress choice is a symptom. I am not just a diagnosis.
- Why do you assume whatever diagnosis I suggest is automatically wrong simply because I suggested it first?
- Why don’t you trust the previous psych’s diagnosis? Every time I see someone new, you insist on diagnosing me again!
- It’s not possible to claim benefits without a formal diagnosis; so if you see a condition in me, tell me.
A real mixed bag of opinions – showing just how individual we each are in our experiences.
For me, just like if I had a physical illness, if I have a mental illness it is important that that illness is identified and named, so that I can learn about it and learn to manage it - but it is very important that both I and others recognise that I am not just a person with that illness, and see me as all that I am.
That makes me think about the issue of mental health patients having insight into their condition – which unfortunately can sometimes be an issue.
- I have a heightened level of ‘insight’ unfortunately it is outside of your field of comprehension.
- What does having insight in to my condition or situation mean specifically?
- Doesn’t matter how long you’ve been working – patients will always know more than you about their condition.
- Don’t tell me to research my illness – then act suspicious when I know what I’m talking about at next appointment.
It’s time to get some feedback on the issue of ‘treatment’. This can take many form including medication, cognitive behavioural therapy (CBT), psychiatric hospital, therapy, and many others.
Firstly, to an issue which many had strong opinions on: Medication.
- Please don’t brush aside medication side effect concerns. They are uncomfortable and REAL.
- Anti depressants aren’t always the answer.
- Putting people on SSRIs isn’t the only kind of therapy there is.
- Please don’t be too quick to prescribe medication; it just masks the underlying issue.
- Thanks for not calling in my meds for a week. Rapid Epitol withdrawl was fun.
- Thank you for all the lovely pills that left me an ambivalent& emotionless now can I have more pills?
- Thank you for starting me back on Seroquel. I finally slept eight hours last night!
- Feel free to warn patients of the terrible side effects of some drugs before prescribing them like candy.
- Don’t tell me I shouldn’t be on the medication ‘you’ perscribed, which is working, for a change.
- Medication isn’t a cure-all and can seriously harm people without helping them at all. Find other treatments!
- When a patient discloses sexual abuse, provide therapy, not medication.
- When a mother of 5 living in poverty, no social supports is depressed, she does not need medication.
- Just because all your Community Mental Health Team can offer is medication or CBT does NOT mean it is the most effective treatment for me.
- Please don’t encourage me to ask questions about the medication you’re prescribing me only to be evasive when I do.
- Do not prescribe medication that increases suicidal thoughts & then not offer an appointment for 6 weeks.
A lot of really good points. I personally feel that there is not enough awareness that the initial side affects of anti-depressants can include increased thoughts of self-harm or suicide, so I am glad to see this raised.
What was felt on the issue of therapy?
- I had 2 years of DAILY psychotherapy to get me to a point of being well. It was expensive but I am worth it!
- Sometimes were not well enough to engage in therapy. Understand that,please.
- CBT is not the answer to everything
- Please offer more than 6 weeks of counselling/CBT on the NHS
A short list of points, but some that I am sure many will empathise with.
Most who lived with a mental health condition will have appointments at some point. What can we learn about how to provide the best appointments?
- It can be difficult getting up and walking away after an appointment without any time to prepare emotionally.
- Don’t ignore me being visibly distressed and leaving appointment in tears.
- I make it a point to be prompt to & keep my appointments. I need you to also do the same.
- Thank you to the psychiatrist who consistently let me stay longer than the allocated time because I needed it.
Very good points, although difficult to fulfill all of them.
I personally have experienced all of these. I found it very frustrating, and often upsetting, when my CPN was often late for appointments, but was also the type of person who found it really difficult to walk away at the end of appointments – meaning she was often late for her next appointment. I am very grateful, though, that she often did let our appointment run on late when I struggled to leave – many times getting very distressed at going away and ‘doing it all on my own again’.
I’m now with a different mental health team – the ones who inspired the hashtag – and I think I can honestly say that they have cancelled more appointments t han I have actually had with them, which gives me very little faith in them, and leaves me feeling quite uncared for.
Naturally, the issue of psychiatric hospital treatment is one which a lot of people spoke out on, and many had strong opinions regarding.
- When I left the ward after 9 months I cldnt make decisions NOT because of my PTSD but due to being on ward.
- Please ask me if I’d like to come for dinner, rather than bellowing “Suppa Time” along the length of the ward.
- Don’t use a patients leave request as blackmail to get them to do what you want.
- Don’t get annoyed when a patient interrupts your hour long gossip to ask for help. Wards are scary enough.
- Small things help in psych unit. Keeping food warm. Offering a cup of tea. Not slamming door.
- Thanks to the HCA who told me staff were routinely smoking weed to get through the night shift. Helpful to know.
- Don’t sit in your office gossiping, reading mags & surfing the net. Talk to your patients.
- Psychiatric units are not the answer to everything. In many cases,it makes things much worse.
- My sister wants to know why mental health wards are so boring for my 18 year old nephew? they are not therapeutic.
- Please don’t use hospitalisation as a threat, it’s not helpful and further stigmatises those who are there.
- Making me terrified that you’re going to commit me for suicide ideation does not promote sharing and openness.
- More corrosive than my illness was the passivity that came from being reduced to nothing on the ward.
- Thank you to my CPN’s lovely student nurse who came to psychiatric hosp and told me the things the nurses should have.
- Please don’t threaten me with being sectioned when I tell you I am ready to be discharged.
It’s saddening to hear so many negative experiences of psychiatric hospital – experiences that I doubt would happen very often in general hospital. I would be shocked by some of these if I myself hadn’t experienced very poor treatment in a psychiatric hospital. I really hope that something can be learned from this feedback, so that things can be improved for others when they are most in distress.
GPs clearly also play a very prominent role in mental health care.
- Why do two GPs in the same practise give opposite advice? Who am I supposed to trust when I am so vulnerable?
- A GP is as much a mental health professional as they are a physical health professional.
- Please work to educate your GP colleagues so they aren’t assholes about mental health issues.
- The GP he didn’t look at me or discuss anxiety & depression, he asked if I wanted meds & looked at his watch.
- A GP who’s good at dealing with MH issues is worth their weight in gold. I’ve known a few.
- My GP offered the first real help I’d received in 15 years of depression & several psychologists.
Mental health cannot be considered on its own. Physical health also plays a big part in it.
- It’s so important to consider physical health alongside mental health – two sides of the same coin.
- Could u take seriously any physical symptoms I have. It’s not ALL due to my PTSD eg it might really BE a UTI!
- You’re not God, but a patronizing prick who hasn’t a clue about t1 diabetes (oops, bit specific that one :p)
- As a person with physical disability & mental illnesses, it is crucial you view me as a whole person.
- Those of us who are physically sick and disabled can’t reliably get to every session of your group therapy. So offer something else instead of discharging us!
The last point on that list leads us to the issue of equality and diversity which can, of course, take many forms.
|Equality and diversity
- Trans people’s mental distress is not always due to being trans and will all be solved by GIC appointment.
- Yet having other mental health needs does not mean a trans person’s identity is not valid.
- When I mention my sexuality as an aside, don’t jump on that and blame it for all my mental health problems. My bisexuality has nothing to do with my bipolar disorder. They are not connected.
- Someone with phone phobia is NEVER going to call a helpline number to ask for help. Think of something else.
- Don’t be afraid to think outside the box. If a patient has phone anxiety, offer some text support instead
- Having a physical disability means your advice such as ‘more exercise’ may cause more harm than good.
Time to move on to looking at some feedback related to some specific mental health issues.
|Borderline personality disorder (BPD)
- 9 diagnostic criteria for #BPD in DSMIV = 256 permutations. I am an individual with INFINITE possibilities.
- Just because my diagnosis is #BPD, do not assume I necessarily act out/seek attention. There’s more to me than BPD.
- Don’t discharge an eating disorder patient based on weight only, weight is a symptom & not the main issue.
- There is so much more to recovery than weight gain; weight gain is just the first step in a long road.
- Using v. low BMI as criteria 4 accessing eating disorder services only reinforces the need 2 lose more weight
- Do not refuse treatment for an eating disorder (and laugh at the suggestion) because I’m not underweight.
- My self harm was an attempt to cope. I don’t pretend it was a healthy but I was trying my best to cope!
- Self harm behaviour doesn’t necessarily mean someone wants to die; it’s usually a coping mechanism.
- It’s generally pretty triggering to ask people for more details of self injury ‘techniques’
- Trying to kill self isn’t ‘cry for help’ but flight from unendurable pain
- When I tell you I’m feeling suicidal please don’t tell me to go home and have a cup of tea.
- Telling me ‘we can’t do anything for you with that attitude’ when I was suicidal was never going to help.
- Don’t tell me the only way I can get more help is by being actively suicidal.
- Do not accuse patients of attempting suicide to punish you and then discharge them. Seriously.
- If I summon the courage to tell you I’m feeling suicidal, don’t act like it’s no big thing.
- Don’t freak out if I tell you I’m feeling suicidal, that helps nobody.
- My nephew should have had help after trying to commit suicide rather than being sent home same day from ICU.
Many issues have been raised throughout the above.
Another issue felt by many is the lack of services and resources outside of Monday to Friday 9 – 5.
|Out of hours services
- Those with mental health problems CAN often do full time jobs, but still need professional help. More evening / weekend support please.
- Mental health problems don’t just happen Mon to Fri 9am to 5pm. There’s always so much worse out of hours.
In some cases 140 characters just wasn’t enough, and some did a blog post in response to the hashtag.
What we are essentially doing through the #dearmentalhealthprofessionals hashtag is finding a way to work together, and many were keen to emphasise this.
- I’m not expecting you to wave a magic wand & “cure” me. I want to help you help me. Please let me. Teamwork.
- ‘United we stand, divided we fall’. Working together is the only way to do this.
- Most of you do a hard job very well. But it takes teamwork to overcome mental health issues.Together, we can do this.
- I want to help you help me, but you have to let me participate in my own treatment. Seriously, it’s not hard.
- Please admit when you don’t know about something. Can’t know everything, you’re human. We can learn together.
- Basically, treat people the way that you expect to be treated, and we’ll get there together #teamwork
- When u take the time to listen & value me as a person just like you, that makes me know we can work together.
- I want to work with you to find the right treatment. Please let me do that.
Now we have given a lot of thought to the needs of mental health patients. But there’s two categories of individuals who we haven’t given much consideration to just yet.
Firstly, carers who play a crucial role in the lives of mental health patients, yet are often overlooked.
- Thank you for supporting me when I was caring for someone else. Carers also need cared for.
And since this is about mental health professionals, isn’t it time we gave some thought to their wellbeing?
|The mental health professionals & their wellbeing
- It is ok for me to see you as a real person with emotions too.
- You’ve always been overworked and undervalued, and it’s getting worse. Please recognise own burnout & depression.
- It saddens me when I see how overworked you are and how that makes you ill & demotivated.
- We understand that 1 in 4 of you will have Mental Health problems Your job leaves u open to intense mental health.
Finally, there are two important tweets that I would like to end this summary on.
|There is no ‘them and us’!There is no ‘them and us’. Mental health patients can become mental health professionals, and similarly mental health professionals can become mentally unwell.
|Thank you!Thank you to all how contributed to the #DearMentalHealthProfessionals hashtag.Thank you to all mental health professionals who saw the #DearMentalHealthProfessionals hashtag as something positive which we can all learn from.
Filed under: mental health awareness