Updates

AdvoCard Community Collective Advocacy – September Newsletter

Due to staff illness, we are unfortunately unable to provide a full newsletter this month.  

We’ve put together a shorter newsletter with information about AdvoCard activities and things that we’re involved with.  

You can read it here:

In this newsletter: 

  • Edinburgh Community Voices – September meeting
  • Consultation on Advocacy Standards in Social Security
  • New AdvoCard Problematic Use Service
  • AdvoCard’s Kiltwalk 2019 Fundraisers
  • Edinburgh Crisis Centre and Crisis Support In Edinburgh – Engagement Event 
  • Peer Research:  Experiences of Side Effects of Mental Health Medication / Experiences of Treatment and Support for Physical Health Issues
  • A&E | All & Equal – Emergency Card

Problematic Substance Use Service

AdvoCard are pleased to announce our new problematic substance use advocacy service. This service is for those people living in Edinburgh who have/had problematic substance use (PSU) issues. This new service is for those that are having difficulty having their voice heard, expressing their views and navigating services.

For more details, or to make a referral, you can give us a call on 0131 554 5307 or see here for more details. www.advocard.org.uk

August 2019 Newsletter

Here is the August 2019 Newsletter / What’s On from Edinburgh Community Voices and AdvoCard:

We hope you find the August 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 for the next edition.  

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 Edinburgh Community Voices meeting will take place:

  • on Wednesday 7 August
  • between 2pm and 4pm
  • at AdvoCard
    332 Leith Walk, EH6 5BR 
  • free tea, coffee and biscuits and some good conversation
  • All welcome 

Edinburgh Community Voices meetings are usually on the first Wednesday of each month and are open to anyone with lived experience of mental health issues. 
If you have not been to an Edinburgh Community Voices meeting before and would like to come along you can call the AdvoCard office on 0131 554 5307 or email us at [email protected] to ask us about the meetings and what we do in collective advocacy.

There is a link to a collective advocacy Peer Research report in the Newsletter; it can be hard to access the links from the Newsletter itself due to formatting, so here is the link to that report if you want to read it:  http://www.advocard.org.uk/2019/07/experiences-of-treatment-and-support-for-physical-health-issues-peer-research-report

There are also links to a Welfare Reform Report in the August Newsletter; as we said before, it can be hard to access the links from the Newsletter itself due to formatting so here are the links to those documents if you want to read them: 
Executive summary: www.bit.ly/DBCexecsummary
Full report: www.bit.ly/DBC_report

Accessible report: http://bit.ly/DBCreportAccessible 
Large print: http://bit.ly/DBCreportLargePrint
We also thought that some of our Newsletter readers might find information on low-cost counselling services useful. If you want to find out more please click on the link: https://edspace.org.uk/information-and-advice/free-and-low-cost-counselling-in-edinburgh/

warm regards
Patricia and Becky

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

Consultation on advocacy standards in social security

The Scottish Government have posted a consultation on the proposed standards that advocacy services will have to work to to provide advocacy in the new Social Security Scotland system. You can have your say here. https://consult.gov.scot/social-security/social-security-advocacy-service-standards/

AdvoCard will be holding focus groups to provide a response to this. If you would like to be involved please get in touch with Arlene on [email protected] / 01315545307

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.

Mind Our Rights! A collective advocacy Mental Health Awareness Week event

on: Wednesday, 15 May 2019 from 13:00 to 16:30 (BST)
at: The Hive, Royal Edinburgh Hospital, Morningside Place,
Edinburgh

This year, Mental Health Awareness Week has a theme of Body Image – how we think and feel about our bodies.  


Edinburgh Community Voices, LEARN and REH Patients Council are hosting a collective advocacy event bringing in-patients, service users, survivors, people with lived experience and mental health health professionals together to discuss: how can people who experience poor mental health ensure that their rights are recognised, respected and realised in relation to their bodies and the processes of care, treatment and recovery.

You can find out more about the event and book a place via this Eventbrite link: 

https://www.eventbrite.co.uk/e/mind-our-rights-mentalphysical-health-and-human-rights-connect-through-conversation-tickets-60404752240?aff=ebdssbdestsearch 

Places are limited so please book if you wish to attend | Sandwich lunch provided for all attendees at 1pm

Please share with your networks as appropriate


Thank you

Edinburgh Community Voices in collaboration with LEARN & REH Patients Council