AdvoCard Community Collective Advocacy: January Newsletter

The newsletter is out earlier than usual this month because of the holidays.  In the newsletter this month:

  • Edinburgh Community Voices – Wednesday 8th January
  • Side Effects Conversations
  • New Collective Advocacy Group
  • Research – Lived experience of psychosis: experience of medical profession and clinical diagnostic label  
  • A&E | All & Equal – Emergency Card 

Edinburgh Community Voices – Wednesday 8th January
January’s Edinburgh Community Voices meeting is on the second Wednesday of the month because the first Wednesday is New Year’s Day.
Edinburgh Community Voices is an open meeting for anyone who has lived experience to come along and discuss mental health and services in Edinburgh.  Tea, coffee and biscuits are provided.  If you’ve not been before and would like to find out more, you can give us a ring on 0131 554 5307 or email [email protected].  

Side Effects Conversations – Let’s Get Side Effects on the Agenda

We unfortunately had to postpone the meeting that was scheduled for 12th November due to staff illness.  We’ll rearrange the meeting for some time next year and will keep you updated.


Towards the end of 2018, Edinburgh Community Voices carried out some peer research to hear from people about their experiences of side effects of mental health medication and treatment and support for physical health issues.

We carried out this peer research to hear from people about their experiences, to get these down on paper, to identify any common issues, and to hear from them about what they think needs to be done to address the issues raised.

We published the reports from the peer research in the summer.

You can read the reports, and find out more, here:

Experiences of Side Effects of  Mental Health Medication:

Experiences of Treatment and Support for Physical Health Issues:

New Collective Advocacy Group ** We had some interest in this group earlier in the year.  We still plan to set it up but haven’t been able to do anything yet due to staff illness. If you’re interested or have ideas please do get in touch and we’ll post updates when we have them.**Do you take part in a planning group (of any kind), steering group, management committee or board, or have you taken part in a group like this in the past? Would you be interested in joining a collective advocacy group to talk about your experiences and discuss how groups like these can better involve people with lived experience of mental health issues?
We haven’t yet decided on a meeting day, time or location.
We know it may be difficult for some people to come to a new group, so we would look to find ways to involve anyone who is not able to make it to meetings, for instance getting your views by email or over the phone.If you are interested, or to find out more, please contact Becky –  0131 554 5307, [email protected]

Research – Lived experience of psychosis: experience of medical profession and clinical diagnostic label
You might be interested in taking part in this research.  The researchers are particularly keen to hear from people who have taken part in collective advocacy.  
One of the researchers, Kat Steggles, told us this:

‘I am a student at the University of Edinburgh and for my final year dissertation I am exploring the lived experience of psychosis. Specifically, I would like to interview individuals who have, at some point, had a clinical diagnosis of schizophrenia and to discuss their relationship with their diagnosis and experience within the mental health system.

As someone who has both personal experience with mental health challenges, and an active member of the CAPS mental health collective advocacy charity in Edinburgh, I am passionate about raising awareness of the individual’s voice, in order to inform health policies and improve future service users’ experience.’

Information about taking part in the research is attached.  You can contact Kat directly ([email protected]) if you are interested in taking part or have any questions.  Or you can contact us and we can ask questions on your behalf – contact [email protected]

A&E | All & Equal – Emergency Card

Would you like to have an Emergency Card?

An Emergency Card can help you get across your needs and wishes to the nurses, doctors and other staff if you ever need to go to the Emergency Department (A&E).

On the card there is space for you to write three things that you would want staff to know and three things that matter to you about your care. You can fill in the card by yourself or with help from somebody else. It can be folded to credit card size so that it can fit in your wallet and be there if you need to use it.

The Emergency Card was created for people with lived experience of mental health issues. However, it doesn’t say anything about mental health on it, you don’t have to write anything about your mental health on it and anyone can use it.

We have put together some guidance to help you decide if you would like to have an Emergency Card and to give you some ideas for things to include. If you would like an Emergency Card and a copy of the guidance, or have any questions, please contact Becky –   0131 554 5307, [email protected]

Background to the Emergency Card

In 2015 – 2016 we ran a peer research project called A&E | All & Equal where we heard from people with lived experience of mental health issues about experiences they had had at the Emergency Departments at the Royal Infirmary of Edinburgh (RIE) and St John’s Hospital, Livingston. One of the issues that came up was that when you’re in distress or are feeling anxious, it can be difficult to communicate with the staff in the Emergency Department, for instance if you have any wishes, needs or other information that you want staff to listen to and take into account. We developed the Emergency Card together with people with lived experience of mental health issues, the Emergency Department (A&E) at the Royal Infirmary of Edinburgh and the Navigator Project.  

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Best wishes, 
Becky and Patricia