Experiences of Side Effects of Mental Health Medication: Peer Research Report

We are happy to publish the report from our Peer Research into Experiences of Side Effects of Mental Health Medication.

You can read it here:

Here is the large print version:

We have put a summary of the results below.

We would like to say a big thank you to everyone who responded to the research and to the peer researchers.

This is not the end of this piece of work. We plan to hold an event at some point in the future with people with lived experience of mental health issues to discuss the results, what action they think needs to be taken and what our next steps should be.

We are still working on the report from the research into experiences of treatment and support for physical health issues and we will get this out as soon as possible.

If you have any questions or want to be kept up to date about this work, please contact Becky – [email protected], 0131 554 5307.

Summary

We heard from 22 people. 

They told us about a wide range of side effects that they had experienced.

They told us that the side effects had an impact in different areas of their lives.  These included but were not limited to a negative impact on:

  • Physical health
  • Mood and mental health
  • Self-esteem
  • Ability to work
  • Relationships and social life
  • Ability to exercise / levels of physical activity

People had different experiences when it came to how much support they received to help them with the side effects.  Some people did receive support but many did not. 

Some people felt that they were given the information they needed about potential side effects, however some people felt that they were not given enough information and some people were not given any information.

Some people told us that they were listened to, some people told us that they were listened to in part and some people told us that they were not listened to at all. 

In answer to our questions about support and information given and being listened to, some people told us that it depends on the doctor – they had had good experiences with some doctors and bad experiences with others. 

These are the things that people would have liked to have been done differently:

  • To have had more information
  • A longer appointment time when the medication was prescribed
  • More support from the doctor
  • A support group with other people who had experienced side effects
  • To have been listened to
  • To have had their concerns and their side effects taken more seriously
  • There to have been more understanding of the impact
  • The likely impact of the medication to have been taken into account when the medication was prescribed
  • Options other than medication, including counselling
  • To see a counsellor or psychologist first before being offered medication
  • Not to have been given medication
  • Option of different medication
  • To have received an accurate diagnosis in the first place

When we asked if there were any wider changes that could be made to address the issue of medication side effects, these are the ideas that people gave us:

  • More research into medication with fewer side effects
  • More alternatives to medication
  • Increased investment in talking therapies
  • People to be given more information about side effects
  • More support given to people to help them deal with side effects
  • When someone is given medication when they are receiving treatment for their mental health in hospital, include side effects in their Patient Care Plan
  • Minimum dose prescribed for shortest time
  • A check-in with the GP to review the benefits of the medication against the side effects
  • The NHS no longer prescribing drugs which are likely to have a negative impact on a person’s wellbeing and self-esteem
  • More acknowledgment of impact of side effects
  • More understanding and sympathy
  • Training for non-mental health doctors and nurses

Emergency Card

We are excited to tell you about the 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. You can download it by clicking on the link below.

If you would like an Emergency Card or have any questions, please contact Becky – [email protected], 0131 554 5307, AdvoCard, 332 Leith Walk, Edinburgh, EH6 5BR.  

We are working on a version of the card that you can print from home.  This will be released here on our website when it is ready. If you would like to be sent a copy be email, please contact Becky as above.

Background to the Emergency Card

In 2015 – 2016 AdvoCard Community Collective Advocacy 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.

December Newsletter

2018 12 December Newsletter

Click on the link above for the December 2018 Newsletter / What’s On from Edinburgh Community Voices and AdvoCard.

Please note that we are extending the deadline for responses for our Peer Research Project on Experiences of Physical Health Care and Side Effects of Psychiatric Medication.  This is to give more people the chance to take part.  The new deadline is end of day Wednesday 12th December.  For more information, see pages 1 and 2 of the newsletter.  
 
We hope you find the Newsletter useful – it has updates on the AdvoCard Collective Advocacy projects and lots of information about support group meetings and other events in Edinburgh. If we have included information about your project or event, please check that we have printed the correct information…and let us know if we need to change anything.
Please get in touch if there is anything you would like us to include on a regular basis or if you would like to write something for a future edition.

The next main Edinburgh Community Voices meeting will take place 

  • on Wednesday 5 December
  • between 2pm and 4pm
  • at AdvoCard
    332 Leith Walk, EH6 5BR
  • free tea, coffee and biscuits and some good conversation
  • All welcome 
Please note that the first Edinburgh Community Voices meeting in 2019 will be on Wednesday 9 January (as AdvoCard will be closed on Wednesday 2 January)
 
Edinburgh Community Voices meetings are open to anyone with lived experience of mental health issues.  If you have not been to and Edinburgh Community Voices meeting before and would like to come along you can call or email to ask us about what we do at the meetings.

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, Wednesday 12th December.

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.