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

Coronavirus UPDATE 26 March

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.

Collective advocacy meetings will not be taking place until further notice.  We’ll keep you updated about online opportunities to take part in collective advocacy in our newsletter which goes out once a month.  If you’re not on the email list for your newsletter and would like to be added to it, please contact [email protected]

Thank you for your patience during these challenging times.

AdvoCard

CORONAVIRUS UPDATE

We understand that this is a difficult time for many of you who use our service. We are trying to find ways to provide as much support as we can to those who need it.

From today, we will not be offering face to face appointments at our Leith Walk office. This will continue until further notice.

However, we will still be around if you need to call us and we will try to work with as many people over the phone as we can.

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]

Collective advocacy meetings will not be taking place until further notice.  We’ll keep you updated about online opportunities to take part in collective advocacy in our newsletter which goes out once a month.  If you’re not on the email list for your newsletter and would like to be added to it, please contact [email protected]

We can also still attend appointments if you have been detained in hospital or if you have an upcoming tribunal.

If you are worried and need our help we can still be contacted on 0131 554 5307

Coronavirus

We’re doing everything we can to minimise the risk of infection to everyone involved with our services.

You can help us by:

– letting us know if you’re unwell with cold or flu-like symptoms (continuous cough and/or high temperature);

– you’ve had an appointment with us recently or;

– you’ve got one coming up


This will help us keep all our visitors, employees, trainees and volunteers as safe and well-informed as we can.


We may offer alternatives to face-to-face appointments in the coming days, such as email, text and telephone appointments.


We appreciate your cooperation.


AdvoCard

Problematic Substance Use Collective Advocacy

AdvoCard facilitates a collective advocacy group for those with lived experience of problematic substance use (alcohol and drugs).  Being part of a peer-support, collective advocacy group is about sharing lived experiences, finding common issues and raising a louder voice together.  A collective voice can be stronger for campaigning and letting service providers and policy makers know what positive changes can be made.  And you could help make the journey better for everyone.

Our first meeting is on Tuesday, 31st March, 2020, 2 to 4pm, AdvoCard, 332 Leith Walk, EH6 5BR.

A date for the first meeting will be put in place over the next while.  Please contact John Muirhead, Collective Advocacy Development Worker, if you’d like to know more – [email protected] 07884 741 686

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:

Community Collective Advocacy: February Newsletter

This month:

  • Edinburgh Community Voices – Wednesday 5th February
  • Side Effects Conversations: Save the date – Wednesday 18th March 
  • Opportunity to influence iThrive Edinburgh
  • New Collective Advocacy Group
  • A&E | All & Equal – Emergency Card

Edinburgh Community Voices:  Wednesday 5th February

The next Edinburgh Community Voices meeting is on Wednesday 5th February, 2 – 4pm at AdvoCard, 332 Leith Walk.  Tea, coffee and biscuits are provided.
Edinburgh Community Voices is an open meeting for anyone who has lived experience to come along and discuss mental health and services in Edinburgh.  
We’d love more people to come along, especially new people who haven’t been before.  Everyone’s view is valid, you will be listened to and you could help someone in the future.
At the last meeting we discussed:

  • Side effects of mental health medication and the upcoming Side Effects Conversations meetings  
  • Issue of difficulties getting home at night from the Emergency Department at the Royal Infirmary of Edinburgh when Night Buses don’t take disabled or 60+ bus passes
  • How we can get more people involved in Edinburgh Community Voices

What we discuss at the February meeting is up to you.  
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: Save the date – Wednesday 18th March
This is the first Side Effects Conversations meeting, which we had to rearrange from last year.  
The meeting will be on the afternoon of  Wednesday 18th March.  We’re still finalising the details and will announce them online (on our website (www.advocard.org.uk), facebook and twitter), and in the next newsletter which will be going out in mid to late February.  
If you would like to register interest or be kept updated, please contact Becky – [email protected], 0131 554 5307.  

We may be planning future meetings for people who’re not able to make the meeting on 18th March.  If you’re not able to make this meeting but would be interested in coming to a meeting at another time, please get in touch.  
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:

iThrive Edinburgh

You might be interested in this opportunity from Health in Mind to shape the new iThrive Edinburgh Website:

*

Health in Mind has been funded by the Health and Social Care Alliance Scotland to create iThrive Edinburgh – an up-to-date, user-friendly, single point of access self-management and wellbeing website.

It will directly support the new Edinburgh Thrive welcome team and network, and the delivery of the Thrive Edinburgh mental health integration strategy/commissioning plan.

The iThrive Edinburgh website will provide information about local mental health and wellbeing services, Thrive information and self-help materials.

Julie Huggan, Health in Mind’s Online Information Development Worker, will be setting up a co-production working group to ensure that community members and experts by experience will have a lead role in shaping all aspects of iThrive Edinburgh design and content.

To learn more, please get in touch by emailing Julie – [email protected] 

As part of the iThrive Edinburgh’s development, we would love to hear your ideas and suggestions. Please fill in our online survey by clicking the link below.

https://www.surveymonkey.co.uk/r/ithrive-edinburgh


New Collective Advocacy Group 
** We had some interest in this group earlier in 2019.  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]


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. 

Board Director Opportunity

HELP CREATE OUR 2020 VISION!

About us
AdvoCard is a well-established independent advocacy charity primarily serving people with experience of mental ill health in Edinburgh. We provide opportunities for people at risk of marginalization and exclusion to participate more effectively in decisions that affect all aspects of their lives, through individual and collective advocacy.

Our activities focus on people who use mental health services in the community and in hospital, people who are in prison, and people with problematic substance misuse. Last year through our staff and volunteers we provided advocacy for 976 individuals, and as the need and demand grows so our services are developing. We have recently extended our service to work in the prison and have developed a specific service to respond to welfare reform.

About the role
Board members provide strategic support and guidance for our ongoing development, ensuring AdvoCard is solvent, well run and meeting its charitable objectives. We look for up to 50% of our Board members to include people with lived experience of the circumstances of the people we serve and who may have used our services.

About you
We are looking for new Board Directors who share our passion about the importance of advocacy in enabling people to have choice and control of decisions in or about their lives. You will bring knowledge, experience and skills to support our strategic development, growth and diversification. Knowledge and experience in charity and voluntary sector finance; HR; Business management; strategic and partnership development; commissioning and contracting; advocacy, social care and health services would be especially useful.

Commitment

  • Attendance and active participation at monthly Board meetings, currently held during the day
  • Attendance at our annual AGM

The total commitment is around 4 hours a month. In return we offer a highly rewarding role and all travel expenses.

Get in touch and make an application

We’d love to hear from you. For more information please download our application pack:

For an informal discussion contact Chris Mackie, Managing Director, [email protected] or on 0131 554 5307.

Read our consultation response to the Scottish Government Consultation on Advocacy Standards

AdvoCard is a user led independent advocacy service for individuals who identify as having a mental health condition. We are based in Edinburgh and provide advocacy support in 3 specific areas – hospital-based advocacy for those who are currently inpatients of the Royal Edinburgh hospital or have been detained on wards in other Edinburgh based hospitals, prison-based advocacy for inmates of HMP Edinburgh and community-based advocacy for those out-with these institutions. As part of our community team we provide a dedicated service for welfare reform and social security advocacy. This service has been in place for 6 years now and in the last year dealt with 725 referrals, a 577% increase in referrals from year one.

In order to prepare our response, we held several focus groups where individuals who have used the current Welfare Reform advocacy service at AdvoCard were asked to provide feedback on the draft advocacy standards.

In order to reach as many people as possible we held focus group meetings at our offices and at three different mental health services in Edinburgh.

In total we spoke to 65 people over the four groups. At each meeting, we discussed the proposed changes to the new benefits that are being devolved to Scotland and the type of support that people felt that they would need to help them through those changes. We then discussed the proposed standards in relation to the type of support that people felt that they would need. This response reflects the issues and concerns raised during these meetings along with observations that we have made as an organisation currently providing independent advocacy in social security.

Do you agree with the definition of advocacy?

AdvoCard agree with the definition of advocacy in these standards. When people refer to our social security service their main priority is to engage support to make sure that they are heard, that they are listened to and that they are given the chance to say exactly how their conditions affect them. In our focus groups there were no issues raised with the definition, with many of the people agreeing that this is an accurate reflection of what an advocacy worker should do.

It was also agreed that the distinction between advice and advocacy was an important factor. Many services often confuse advocacy with advice, particularly when it comes to support with social security and it is important that this distinction is made here to avoid confusion not only for those who may refer to the service but also for services that may seek to provide advocacy in the future.  

However, whilst we support the overarching definition of advocacy as laid out here, we do share the concerns of the SIAA that the definition refers to “advocacy” and “advocacy worker” rather than “independent advocacy” and “independent advocacy worker”. We feel that as the standards apply to the provision of “independent advocacy services” that the term should be used consistency throughout the standards to avoid confusion.     

Is anything missing from this definition and, if so, what?

We are concerned with the statement – You are entitled to the support of an advocacy worker if you have a disability and, because of your disability, you need help with the Scottish social security system.

Whilst it is appreciated that the Scottish Government do not intend to limit the definition of what the term disability means, many of the people who use our service and those who attended the focus groups do not identify their mental health conditions as a disability. This may result in them not being aware that they are entitled to use advocacy support. More clarity is need to address this.  

 Do you agree with the principle of “independence”?

Whilst we appreciate that the definition in the standards meets the definition as described in the Social Security Scotland Act, neither AdvoCard nor the people who have used our service, agree that adhering to this definition in the standards will provide the best possible service for those who will have cause to engage with Independent Advocacy.

At our focus groups we discussed what it means to be an Independent Advocacy Service working to SIAA standards and principles and what it would also mean as defined by the Social Security (Scotland) Act 2018. We explained to people that the definition of advocacy used here means that agencies that provide employment support, benefit advice, social support etc can all provide “independent” advocacy for the purposes of social security.

Most people were alarmed at this. Although it was explained that the terms of the Act did not require any service to be completely independent it was felt that the standards and principles should be used to tighten the definition of what it means to be independent. Many of the people present were involved in the campaign to have the right to access independent advocacy included in the Act and commented that this is not what they were campaigning for.  Some commented that they were concerned about conflict of interest and the likelihood of impartiality from advocacy workers.

 “It’s important that the person helping you is on your side and not just doing what their service decides is right for you.”

Currently, independent advocacy organisations work to SIAA’s ‘Principles, Standards and Code of Practice’, which defines an independent advocacy organisation as one that, “…. only provides independent advocacy. All the activities it undertakes are about providing, promoting, supporting and defending independent advocacy. Its independence means that it does not provide any other services and so it is structurally, financially and psychologically separate from other organisations and interests”.

For those who use our service the issue of being financially and psychologically separate is an important one. At our focus groups, concern was raised that organisations that provide other services will not be able to maintain independence no matter what guidelines and safety features are put in place. It was felt that the members of staff providing advocacy within that organisation would be affected by organisational culture, service requirements and maintaining relationships with other team members who provide other areas of support such as advice or employment support. Therefore, they may struggle to maintain their level of psychological independence from the organisation and may try to steer the direction of work with the person seeking advocacy towards one that fits with their organisational culture and benefits their organisational outcomes. There is also a danger that a person may have used the organisation for another purpose, such as advice, and been unhappy with the service so therefore feels that they cannot access the service for advocacy as they are too closely related.

Is anything missing from the standards and if so, what?

We support the SIAA call for a definition of independence that will ensure meaningful independence, rather than independence in name only. This requires a far more nuanced assessment of what makes a person or organisation independent than the current definition of, ‘a person other than the Scottish Ministers’.

Do you agree with the principle of “person centred”?

Yes, AdvoCard, and those who use our service, strongly support the principle of a person-centred approach to advocacy. The addition of a standard for a person-centred approach is seen as a welcome addition and an important factor in ensuring that any work carried out is always done at the express wishes of the person, regardless of organisational opinion. This was seen as particularly important in the area of benefit uptake and income maximisation. It has been suggested that by engaging with advocacy that the person may be supported to engage with the social security system and which will in turn aid benefit uptake and income maximisation. In many cases this may prove true, however, a person centred approach as described here must allow for circumstances where the person no longer wishes to engage with the social security system for their own personal reasons, regardless of their entitlement to claim a benefit, they may wish to withdraw a claim or chose simply not pursue their entitlement. A truly person-centred approach to advocacy will ensure that the persons wishes are respected and that the person is supported to do what is best for them.

Do you agree with the standards?

Yes, we agree with the standards as they are written.

Is anything missing from the standards and if so, what?

AdvoCard support SIAA’s concern that multiple sets of standards for independent advocacy, the SIAA standards, the Social Security standards and the Child Hearing standards, runs counter to a person-centred approach. Those who use our advocacy service also use our service for other reasons such as housing issues, children and family issues, problems with treatment and diagnosis etc. Having different organisations providing different types of advocacy working to different standards will be confusing for the individual and does little to place them at the heart of the process as claimed in the principles.

Do you agree with the principle of “accessible”?

We agree with principle of accessibility and, as an independent advocacy organisation already work to ensure that our service is accessible to all that need to use our service. We provide face to face advocacy through office-based appointments, home visits and external appointments at other agencies such as support groups etc. We also provide telephone-based appointments if necessary. With regards to additional services required, we have access to interpreters in sign language and foreign language interpreters, however these come with additional costs that are met through our own limited budget. In order to ensure continued accessibility, it is vital that the Scottish government commit to the provision of adequate funding to cover the additional costs of ensuring absolute accessibility.

Do you agree with the standards?

We do not believe that the last four standards under this principle relate to accessibility and feel that they would be much better situated elsewhere in the document, perhaps within the definition of advocacy, within the section on the principle of independence and within the section on the principle of quality assurance.

We also have concern about the principle that states, ‘If you tell your advocacy worker that you may be at risk of harm or that you want to harm yourself or someone else they will discuss this with you but may need to share this information with others without your consent’.  There is not enough information here to highlight under what circumstances an advocacy worker would decide to share information without consent. Deciding what constitutes risk of harm cannot be left to the advocacy worker alone and must be in line with current safeguarding guidelines.

This standard could be improved by a) the addition of a sentence stating that the advocacy worker will always speak with you before breaching your confidentiality and b) explicit use of the word safeguarding to describe these situations. It is critical that both independent advocates and people using independent advocacy know and understand that confidentiality will only ever be breached within the context of safeguarding.

Do you agree with having a principle of “trained”?

We agree that it is important that advocacy workers are trained in both advocacy and in social security legislation and guidance

Feedback from our focus groups showed agreement that advocacy workers should be trained and experienced in providing advocacy. They should also have a good working knowledge of the Social Security System and a good understanding of individual rights under the social security act. In addition to this, many also suggested that the advocacy worker should be trained and experienced in working with the specific group that they are providing advocacy for. For example, training in mental health conditions, autism, learning difficulties etc. There was also a suggestion that all workers should receive Applied Suicide Intervention Skills Training as there is a need to discuss suicide and self-harm at face to face benefit assessments. 

Some of the comments that we received were

“I need someone who knows the right questions to ask me. I don’t like talking about my illness so if you don’t ask I won’t tell you.”

“The (…advocacy worker…) needs to know what’s going on with the benefits or what help will they be?”

 “If they don’t know what my rights are how will I know?”

“They need to have mental health training, or learning disabilities if they are working with people with learning disabilities or how will they know how to work with us?”

Do you agree with the standards?

Whilst we do agree with the standards, we do not feel that principles 1 and 4 are specific enough

Whilst we agree with the intention, we feel that these principles do very little to detail the level of training and knowledge required and leave this to the interpretation of the service provider. This can result in disparities across services. These principles would be strengthened by including the level of training required.

Do you agree with having a principle of “quality assured”?

AdvoCard agree with quality assured as a principle. In order to ensure high quality services, it is important to have robust, transparent systems in place for monitoring and evaluating the service.

Do you agree with the standards?

Of all the standards we felt that the principles of quality assurance were the most problematic. Whilst we agree with the standards, we feel that the wording could be strengthened in several places to ensure consistency across services.

1 – Advocacy workers will keep accurate and up to date written records of action taken, progress made and outcomes achieved. – reference should be made to what is considered an outcome and what the written records will be used for.

2. Advocacy services will have systems for receiving, addressing and monitoring feedback and complaints and you will be told about these. – to ensure consistency there needs to be an agreed system for feedback and complaints that will be used

throughout all advocacy services involved in the provision of advocacy in the social security and reference must be made to this in the principle.

3. Feedback and complaints forms will be available in accessible formats, without having to be requested. – this does not go far enough. To ensure a high level of service advocacy services must proactively seek feedback through various forums.

4. Advocacy services will take all feedback and complaints seriously and will respond promptly. – “promptly” is open to interpretation, to ensure a high-quality service as standard, specific timescales must be given.