What do you need? – Coronavirus (COVID-19) and the Lockdown

(AdvoCard Community Collective Advocacy)

UPDATE: Deadline extended to Sunday 2nd August

We are aware that many people are facing extra challenges and difficulties just now with the coronavirus (COVID-19) pandemic, the lockdown and everything else that is going on. 

At a time like this, it is even more important than usual that the views of people in Edinburgh with lived experience of mental health issues are represented and heard when services and support are being planned.

We want to hear from you about:

  • how you have been affected by the situation
  • what you need – for you mental and physical health, and your wellbeing
  • whether or not there are accessible services in place that meet your needs

We would also like to hear if there is anything happening now that you would like to see continue in the future.  

And we would like to hear if you have any ideas for changes that could be made that would improve life for people with mental health issues in Edinburgh just now.

You can respond to our questions in a variety of ways.  

  • You can download the questionnaire and return it by email to [email protected] or by post to Collective Advocacy, AdvoCard, 332 Leith Walk, Edinburgh, EH6 5BR. The Large Print file has size 16 font, making it more accessible for anyone with a visual impairment. It also has larger spaces for handwriting if you feel that you would need a larger space. (We’re not able to upload Word document versions of the questionnaires to the website just now, we hope to do so soon. Please email [email protected] if you would like one sent to you.)
  • You can ring us on 0131 554 5307 or email [email protected] and ask for a paper questionnaire to be posted to you.
  • If you would need somebody to fill in the questionnaire for you, please contact us to let us know.  We hope to be set up soon to help you with this over the phone.  Or alternatively you could ask somebody else to help you with this.  If you have any accessibility requirements not met in the methods outlined above, then please also get in touch. We’re all working from home, so we don’t have the same options we would normally have, but we will see what we can do! You can contact us on 0131 554 5307 or email [email protected]

Please return your completed questionnaire by Sunday 2nd August.   

As this is an ongoing situation, we plan to provide more opportunities for you to respond later in the year.

If you have any questions or would like to be kept updated about this work, please email [email protected] or ring 0131 554 5307 and ask for Becky. (Becky is working from home just now, but will ring you back.)  

Please also get in touch if you would like to join the collective advocacy newsletter mailing list.

What will we do with what you tell us?

We will put together a summary of the responses and put this up on our website – www.advocard.org.uk.  (At some point in the future we might create a website specifically for this project.). 

We will also pass your views onto service planners and providers whenever we have the opportunity.  

The Scottish Government Equalities and Human Rights Committee have launched an inquiry into the impact of the Covid-19 pandemic on equalities and human rights – we will be submitting a response to this inquiry and will include your views in our response.

Everything that will be published will be anonymised – that means that nobody’s name and no personally identifiable information will be included.  (We are not asking for names, and if anyone does give a name it will be treated as confidential information and not included.)

Community Collective Advocacy – April Newsletter

Our newsletter is quite different this month.  We’ve had to make (temporary) changes to how we operate our services at AdvoCard, so in this newsletter we will be letting you know how we are doing things just now in light of the current situation. 
We understand that this will be a difficult time for many of you.  Although we’ve had to make changes, we are still here and we are trying to find ways to provide as much support as we can to those who need it, both with individual advocacy and collective advocacy.
If we make any further changes, then we will update you on our website (www.advocard.org.uk) and in this newsletter.  

AdvoCard Community Collective Advocacy


There will be no April Edinburgh Community Voices meeting.  We are not able to hold collective advocacy meetings at this time.  However, at a time when mental health and wellbeing services have been affected by the present situation, and the situation itself creates extra challenges for people with lived experience of mental health issues, there has never been a more vital role for collective advocacy in supporting you to have your voice heard in shaping the treatment and support that you receive.
We had already started work to better include people who, for a variety of reasons, aren’t able to make it to meetings.  This gives us a good starting place to work from, and we are currently working from home on a plan for how to go from here.  We’ll keep you updated in this newsletter about how you can take part in collective advocacy.  We know that not everybody is online just now, so we are looking into ways to include people who can’t get online.  
If you know of anyone who would like to receive the newsletter but would not be able to receive it by email, including people who might be on our email list but normally access the internet outside of the home, please ask them to ring us on on 0131 554 5307.  (The call will be diverted to one of our workers or we’ll pick up your voicemail message.)

AdvoCard Individual Advocacy 

Our offices at the Royal Edinburgh Hospital and 332 Leith Walk are now closed and all our staff are working from home. Please call 0131 537 6004 if you want advocacy in the Royal Edinburgh Hospital. For all other community issues call 0131 554 5307 (Leith Walk). Your call will either be diverted to one of our workers or we’ll pick up your voicemail message as soon as we can.

We’re doing our best to keep up to date with the rapidly evolving guidance and practice around the Mental Health Act, Guardianship and Adult Protection.

For those of you who need support to complete a benefit form or to draft a reconsideration, Arlene can offer a telephone appointment with you on 07920207569 or can offer support by email at [email protected]

For our Problematic Substance Use service please call Scott on 07918127366 or email: [email protected] to find out more or to make a phone appointment.

Problematic Substance Use Collective Advocacy

Hi, I’m John and I’d like to tell you about a new service in our collective advocacy in problematic substance use.  It’s a collective voice for those who have lived experience in drugs and alcohol recovery.  And we want to create a space for people to come together to:

– have a chance to work with others with lived experience- make a difference for others- have your voice heard on issues important to you
The plan is to meet as a group, but we will have to delay that for the time being.However, we would still like to hear from you.  If you’d like to be part of the conversation just now, please answer the following 2 questions and send them to John at Advocard ([email protected], 07884 741 686).
1. In your recovery from drug and alcohol use, list the main issues you have faced (such as stigma, delays in receiving support, feel isolated, etc.).2. Would you like to help create a group of people with a similar lived experience and steer it forward?

Or, if you want to find out more, you can contact me on the above email and mobile.
Thanks

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

Wednesday 18th March, 2 – 4pm

Volunteer Edinburgh, 222 Leith Walk, EH6 5EQ

Lots of people have told us about the issue of mental health medication side effects and the impact of side effects on their lives.

We are holding a meeting to hear your views about what needs to be done to address this issue.  

If you’d like to attend, please contact Becky at AdvoCard to book a space – 0131 554 5307, [email protected]

Spaces are limited  so please get in touch as soon as possible if you’d like to be there.

If you are not able to make the meeting, we are hoping to hold more Side Effects Conversations meetings in the future – please get in touch to let us know if you would be interested in coming to another meeting.

 We’re aware that some people find it difficult to get to meetings or may not feel comfortable talking about issues like this in front of other people. We want to include as many people in the conversation as possible.

If you would like to take part but a meeting is not for you, please contact Becky as above and we’ll see what we can do to include you in the conversation in another way, for instance getting your views by email.

(Please note: this meeting is for people in Edinburgh who have lived experience of mental health issues.)

 

Background

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:

Experiences of Treatment and Support for Physical Health Issues: Peer Research Report

We are happy to publish the report from our Peer Research into Experiences of Treatment and Support for Physical Health Issues.  

You can read the report here:

A large print version will be produced shortly.

A summary of the report is below.

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

If you would like to be involved in what Edinburgh Community Voices do next with this work, please contact Becky – [email protected], 0131 554 5307.

You can find the report from our peer research into Experiences of Side Effects of Mental Health Medication here:

http://www.advocard.org.uk/2019/06/experiences-of-side-effects-of-mental-health-medication-peer-research-report/

Summary

We heard from 14 people.

They told us about a range of conditions and symptoms they sought help or received treatment for.

A range of professionals were involved in their care or treatment, including GPs, nurses, consultants, physiotherapists and occupational therapists.  For some people, mental health professionals were involved as well as physical health professionals at some point in their care.

Things people were happy with included:

  • Being listened to, believed, treated with respect and taken seriously
  • Being treated with compassion / staff being kind and caring
  • Adjustments being made to make it easier to attend appointments
  • Tests organised quickly
  • Thorough investigations into symptoms
  • Physical health professionals and mental health professionals being in regular contact

Things people were not happy with included:

  • Their physical health being ignored
  • The impact of their physical health issues not being recognised
  • Delay in referral for tests
  • Delay in diagnosis
  • Issues with how GP appointments are arranged
  • Issues with how GP appointments are carried out
  • No discussions of side effects of physical health medication
  • Required adjustments not being made
  • Lack of communication between physical health professionals and mental health professionals 
  • Physical health needs not being met for inpatients in the Royal Edinburgh Hospital 

Most of the things that people told us made it easier to get help were related to appointments with their GP, either because they find it easy to get an appointment, because of how their GP carries out appointments or things their GP does, or because of other services their GP practice provides. 

Some people felt that they were treated differently in a bad way.  Some felt that they were treated differently and that this was in a good way, they got the extra help or adjustments that they needed.  Some people felt that they were not treated differently and that this not right, that there were adjustments that should have been made.  Others felt that they were not treated differently and that this was good because their mental health diagnosis did not affect the standard of service they received and they were not stigmatised against. 

Some people did feel listened to, some people felt listened to in part and some people did not feel listened to at all.

These are the things that people told us would have made their care better for them:

  • A home visit by an occupational therapist to assess their physical health needs
  • Greater integration and interdisciplinary working between NHS departments
  • Offering acupuncture and massage
  • Their whole life looked at not just their physical health
  • A key worker
  • Physical health services not discriminating on the basis of mental illness
  • Alternative treatment options offered
  • More recognition of impact of physical health medication side effects
  • Having had more social support, e.g. a friend to help them when unwell

These are the wider changes they identified which could be made to improve the care that people with lived experience of mental health issues receive for physical health issues.

  • Listen to, believe and help us
  • Don’t dismiss physical health
  • More funding for improving physical healthcare for people with mental health issues
  • Encourage people with mental health issues to take part in screening programmes (e.g. cancer screening)
  • A mobile triage service within Community Mental Health Services
  • Don’t prevent people from joining the Pain Management Programme because of a severe mental health diagnosis
  • One key person responsible for prescribing pain and psychiatric medication
  • Greater team working between GP, physio, psychiatry, psychology, neurological services, with key lead
  • Believe that the pain is real and not all in someone’s head
  • A key worker, volunteer or advocate
  • More training on mental health for medical staff in general hospitals
  • More consistency and awareness of staff, both mental health and physical health

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.