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.

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

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:



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.


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,

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: 


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

AGM report

Thanks to all those who attended and participated in our recent AGM. We also said goodbye to our outgoing Chairperson, Dianna Manson. We thank you for all your hard work and dedication, and wish you all the best for the future.

Our AGM report – which was distributed at the meeting – is available here for download:

Our Strategy Document is also available here: