Community Collective Advocacy Peer Research: Experiences of Physical Health Care and Side Effects of Psychiatric / Mental Health Medication

People often tell us about two important issues: experiences of physical health care when you have a mental health diagnosis or lived experience of mental health issues; and side effects of psychiatric medication

We are carrying out research to get these experiences down on paper, to identify any common issues and to gather your views about what needs to be done to improve the care people receive for their physical health issues and to address the issue of medication side effects.

The aim of this research isn’t to make a judgment about physical health care in Edinburgh or the pros and cons of medication.  People have different views on these issues and what we want to do is represent those views.

Please note: this is for people who live in Edinburgh and who have lived experience of mental health issues or have used mental health services.

*This is peer research – that means that people with lived experience of mental health issues have planned the research, and we have two peer researchers who both have lived experience who are working with us to carry out the research.*

How to take part

We’ve found that it can be really powerful to be able to relate people’s experiences and views in their own words.  We’ve put together two questionnaires (one for each issue) so that you can help us to do this.

You can fill in one of the questionnaires, or both, whichever is relevant for you.  There are different ways that you can fill in the questionnaires:

  • Online
  • On your computer
  • By hand
  • With the help of one of the peer researchers or an AdvoCard worker

If you would like help to fill in your form, please let us know by the end of October so we can arrange a time to meet with you.

Here are the word document copies of the questionnaires (please click on the questionnaire that you want to download):

Peer Research – Word Doc Questionnaire (Treatment and Support)

Peer Research – Word Doc Questionnaire (Side effects)

Large Print Word Doc Questionnaire (Treatment and Support)

Large Print Word Doc Questionnaire (Side effects)

These are the links which will take you to the online questionnaires –

Physical Health Support and Treatment: https://www.smartsurvey.co.uk/s/IZRGU/

Side Effects of Psychiatric / Mental Health Medication:   https://www.smartsurvey.co.uk/s/BAA60/

This information sheet will tell you more about filling in the questionnaire online:  

Peer Research Information Sheet – Online 

Large Print Information Sheet – Online Questionnaire 

The deadline for filling in the questionnaire online or sending us your completed questionnaire is end of day, Monday 19th November.

If you would like us to send you a printed copy of the questionnaire, would like help to fill in the questionnaire or have any questions, please contact Becky – [email protected], 0131 554 5307.


Volunteer with AdvoCard

AdvoCard will be running our 8 week training course this September for potential Volunteer Advocacy Workers. This consists of 2 full Saturdays and 6 Wednesday evenings 6-9pm. We are looking for people with a non-judgmental attitude and an open mind. You need to have availability to attend appointments here with people at Leith Walk and also be available to conduct home visits across Edinburgh with people who are unable to leave their homes; home visits are always conducted with two volunteers. We also need volunteers to have availability a couple of times a week at least for between 2-4 hours per week (or more if possible.)

You can apply through our website http://www.advocard.org.uk/volunteering/

If you want to discuss things further, please phone Paul the Volunteer Coordinator at AdvoCard here on 0131 554 5307 and he will be happy to have a chat with you or you can pop in if you would prefer to arrange to see Paul here at Leith Walk.
We will be running the next course towards the end of September this year and we will be interviewing potential candidates over the next few weeks once we have enough candidates.

A&E | All & Equal – Focus Group – We Need Your Views!

Thursday 19th July, 2 -4 pm, AdvoCard, 332 Leith Walk

In 2015 – 2016 we ran a peer research project 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.

Together with the Emergency Department at RIE and the Navigator Project, we are developing a discreet card which you could keep in your wallet and fill in with things that you would want to get across to staff if you found yourself needing to go to the Emergency Department, to help you speak up, express your needs and wishes and be heard.  You could hand it to the staff at the Emergency Department to read, or you could have it to look at it before you speak to staff so that you feel more confident.

We are holding a focus group meeting to get your views on the card and what it looks like – Thursday 19th July, 2 – 4pm at AdvoCard, 332 Leith Walk.  This meeting is open to anyone who has lived experience of mental health issues.

If you’d like to attend, please contact Becky – [email protected], 0131 554 5307.

If you have any questions, or would like a copy of the A&E | All & Equal report, please contact Becky as above.

Social Security (Scotland) Act to include right to access advocacy


Over the past year, AdvoCard, along with SIAA, DAS, The Health and Social Care Alliance (ALLIANCE) and the Scottish Council for Voluntary organisations (SCVO) have been engaging with people who use our services, other organisations in the Third Sector, MSPs and the Minister for Social Security to raise awareness of the need for access to advocacy services for everyone who will have cause to access the new system.

Although initially resistant, thanks to all our continued efforts, the Government are now aware of the role that advocacy can play and the need to have access to advocacy services included in the Bill.

At the Stage 1 debate the Social Security Committee recommended that the Scottish Government consider including access to independent advocacy as a principle of the Social Security Bill and as a right in the legislation. Unfortunately this was not acted upon. However, Stage 2 saw further developments as the minister tabled her own amendment to the bill providing a right to access to independent advocacy services for people with mental illness, personality disorder or a learning disability as defined under the Mental Health (Care and Treatment) Act 2003. It was made clear at this point that this would be a starting point and that the aim was to widen access at Stage 3 after consultation with stakeholders.

This has now taken place and the Minister replaced the initial amendment with her new amendment at the stage 3 debate. This amendment states that every individual who, owing to a disability, requires an advocates help, will have the right to access independent advocacy services for support to engage with the new social security system.

This means that everyone who self identifies as having a disability due to a physical condition, long term health condition, mental health condition, learning disability or any other reason will have a right to access independent advocacy services if they need support to engage with the new Social Security system in Scotland.

While this is not the universal access we would have like to have seen this is a huge step forward for people who need help accessing social security and could not have been achieved without your support. Thank you to all who took the time to engage with our campaign over the past year and who emailed their MSP asking for support.

We will continue to engage with the Scottish Government around the provision of the advocacy services. Keep an eye on our facebook page for updates on this.