Updates

Welcome to our new interim CEO

Rebecca Barr

Rebecca has come to AdvoCard after a long career in social care in both the third and statutory sectors. She will be working with us on an interim basis to help steer the organisation through the many changes that this “new normal” brings. Over the next few months Rebecca will be looking at ways that we can improve the service that we offer and will be providing support and guidance to staff as we adjust to a new model of working.

She says “I am delighted to be joining AdvoCard as interim CEO and look forward to meeting as many people as possible over the next few weeks as I learn more about the great advocacy services provided. This continues to be a difficult period as Covid restrictions remain in place but I know how committed our staff are to doing their very best for everyone who needs them.

Rebecca is supported by our two Advocacy Managers Ben Baldock, who manages the hospital based and prison advocacy teams, and Arlene Astley, who manages the community advocacy teams. Ben and Arlene came into post in June and together manage the day to day operations of AdvoCard.

Mind Our Rights Report now Live.

The Mind Our Rights! event was devised in the context of Mental Health Awareness Week 2019, which had a focus on Body Image, Human Rights, and Mental Health. The aim of the event was to bring 50 service users, survivors and people with lived experience and mental health professionals from various fields to come together to discuss human rights and key issues relating to mental health, physical health and body image.

The Scottish Government has stated that Human Rights are fundamental to the principles of mental health care and treatment; it is the role of mental health advocacy to support people with mental health issues to access their Human Rights and advocate for these rights to be met effectively and appropriately by national and local government and the services they fund.

Mental health advocacy groups in Edinburgh and Lothian have become increasingly aware through their work with patients, people supported by services and people with lived experience – our advocacy partners – that there is an ever-increasing gap between national/local government policy, strategy and the declared positive intentions of providers and the experience of people with mental health conditions/issues.  Our advocacy partners are calling for

  • the delivery of a genuine, consistent and coherent human rights approach within both statutory and third sector mental health service provision – this is currently failing.
  • greater and more secure funding for support services for people with mental health issues that are provided by small, local third sector organisations and grassroots projects; these are currently under threat from shrinking local authority budgets combined with integrated joint board efficiency improvement measures and strategies
  • Human Rights as set out in the UNCRPD must be realised for all people with mental health issues 

Report by Patricia Anne Rodger | Community Collective Advocacy Development Worker at AdvoCard with support from Anne O’Donnell of LEARN/CAPS Independent Advocacy and Simon Porter of REH Patients Council and our advocacy partners

Rights Based Care Partnership Symposium

AdvoCard are taking part in the Rights Based Care Partnership Symposium which is taking place online on Thursday 8th October.

Our Community Collective Advocacy Development Workers Becky Leach and Patricia Rodger will both be presenting their recent collective advocacy work, while our Advocacy Manager Arlene Astley will be giving the summing up talk, looking at what we have learned from the day and how that can be taken forward and incorporated into the work of the Health and Social Care Partnership going forward.

Patricia will be launching the Mind our Rights report along with Simon Porter of the Patients Council and Anne O’Donnell of Learn. You can read the full report here

Becky will also be talking about rights based care in the community, specifically referring to our peer research on people’s experiences of side effects of mental health medication, treatment and support for physical health issues, and people’s experiences in the Emergency Department (A&E | All & Equal).

The full reports can be read here

Since we published the A&E | All & Equal report in 2016, we’ve been working together with people with lived experience of mental health issues and the Emergency Department at the Royal Infirmary of Edinburgh to deal with some of the issues that came up in the peer research and improve things for people with mental health issues when they use the Emergency Department.

To mark What Matters to You? Day (earlier this year), Sara Robinson from the Emergency Department wrote a blog post about our collaborative work: https://www.edinburghemergencymedicine.com/blog/2020/6/8/what-matters-to-you

All these reports were made possible through the contribution of Edinburgh Community Voices collective advocacy group. We are currently running online Edinburgh Community Voices collective advocacy meetings. These meetings are for anybody who lives in Edinburgh and who has lived experience of mental health issues. At the moment we are meeting on the first Wednesday of every month, 2 – 3.15pm, we will also be adding a second monthly meeting on a different day for those who cannot attend Wednesday groups.

Please contact Becky if you’re interested in taking part – [email protected]

AdvoCard Community Collective Advocacy – August Newsletter

(If you’d like to receive the newsletter by email, please email [email protected])

In the newsletter this month:  

We’re getting started with Online Edinburgh Community Voices Meetings.  

We have extended the deadline for our survey into the impact of the Coronavirus (COVID-19) pandemic and what you need from services – thank you to everyone who’s responded so far. We’d love to hear from more people so we can best represent the views of people with lived experience of mental health issues in Edinburgh. Please get your responses to us by Sunday 16th August

We have an update on the Scottish Mental Health Law Review.

The Edinburgh Health and Social Care Partnership have a Survey out.

Information about all of these is below, plus information about our A&E | All & Equal project and the Emergency Card.

Edinburgh Community Voices – Online Meetings

We’re still not able to hold face to face group meetings because of the current restrictions.  However, we are able to hold online Edinburgh Community Voices meetings and would like to hold the first meeting this month.  We haven’t set a date for the meeting yet because we want to find a day/time that suits you.  If you have any questions, we’d be happy to answer them.  If you’d like to take part, please contact Becky (0131 554 5307, [email protected]).   


We know that not everybody is able to take part in online meetings.  If you would find it difficult to take part in an online meeting, but would still like to be involved in Edinburgh Community Voices in some way, let us know (contact Becky as above). For instance, we could have a chat on the phone and get your views that way.  

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

We are aware that many people are facing extra challenges and difficulties just now with the coronavirus (COVID-19) pandemic, the restrictions and everything else that is going on. Although some of the restrictions have been lifted, there are still some things that you are not able to do, and many services are still not operating in the way that they were before.

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 your mental and physical health, and for your wellbeing
  • whether or not there are accessible services and support 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, including an online questionnaire, by email and by post.  

For more information please go to – http://www.advocard.org.uk/2020/05/what-do-you-need/  Or you can email [email protected], or ring 0131 554 5307 and ask for Becky. (Becky is working from home just now, but will call you back.)
Please return your completed questionnaire by Sunday 16th August.

Please share this with anyone you think may be interested.

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.  

We will also pass your views onto service planners and providers.  

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.

Scottish Mental Health Law Review 

One of our collective advocacy workers, Becky Leach, is taking part in the Capacity and Supported Decision Making Advisory Group of the Scottish Mental Health Law Review. Please feel free to get in touch with Becky if you’d like to hear more about what she’s doing (0131 554 5307, [email protected]).

The summary of the responses to the recent Scottish Mental Health Law Review consultation was published in July. You can see them here – https://cms.mentalhealthlawreview.scot/wp-content/uploads/2020/07/Summary-of-Responses-to-the-Consultation-for-the-Scottish-Mental-Health-Law-Review.pdf

There’s more about what’s happening with the Scottish Mental Health Law Review, and the Advisory Groups, in the latest newsletter here – https://www.mentalhealthlawreview.scot/workstreams/smhlr-newsletter-july/

Edinburgh Health and Social Care Partnership – Survey

The Edinburgh Health and Social Care Partnership are carrying out a survey.  We have put more information, which we have been sent, below.  The deadline is soon and it’s only accessible online.  However, if you would find it difficult to fill in the survey online, or if you would like some more time, we would be happy to pass on your views to the Edinburgh Health and Social Care Partnership separately (contact Becky – 0131 554 5307, [email protected]). 

If you would like to discuss Health and Social Care in Edinburgh, what’s important to you and what you’d like to tell the Edinburgh Health and Social Care Partnership, at our upcoming Edinburgh Community Voices online meeting, then that’s something you can do as well.  

*

The Edinburgh Pact

 The Edinburgh Health and Social Care Partnership, responsible for delivering community and bed-based health and social care services for adults in Edinburgh, want to build thriving communities in Edinburgh and embrace the opportunity to create a different type of relationship with residents, communities and organisations across the city.

 It’s why they are starting a conversation to build the Edinburgh Pact. The Edinburgh Pact will be an agreement between the Partnership and everyone who lives and works in Edinburgh. And the first step is to listen and learn what health and social care means to you.

How can I get involved?  

The Partnership want to hear from everyone in their short survey – from dedicated groups of volunteers and people using health and social care services, to people providing key services across the City and our committed Third Sector colleagues. 

 Please take a few minutes and let us know what health and social care means to you so that we can make sure it’s a service created by the community, for the community in Edinburgh. The survey closes on 12 August and is a designed to be an open and accessible to everyone.   – https://consultationhub.edinburgh.gov.uk/hsc/edinburgh-pact/

 You can also find more information on the EHSCP website – https://www.edinburghhsc.scot/the-partnership/the-edinburgh-pact/

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.

Thank You to AdvoCard’s Volunteer Advocacy Workers

Hi there,

My name is Paul McInneny and I am the Volunteer Coordinator for AdvoCard.

I would like to take some time out in Volunteer’s Week to personally thank every one of our amazing Volunteer Advocacy Workers (VAWs.)

Our VAWs are an integral part of our service and allow us to deliver greater reach and support in our service provision.

With their involvement, we are able to provide Advocacy Support to anyone in Edinburgh who is a user of Mental Health Services. We can assist them with a much greater range of issues that affect their day to day lives than just those that fall under our core funding.

We have a diverse group of people from many backgrounds. From people with lived experience, retired professionals, people in work, people on benefits and people at College or University. All bring unique perspectives, learning and shared experiences to our service.

Whether it is going to a GP appointment with someone because their GP doesn’t listen to them, attending a Psychiatrist appointment to take notes so that they can remember everything that was said, helping them draft a complaint to the Council because of how they have been treated or attending a Children’s Hearing with a parent to make sure their voice was heard amongst the professionals. Our Volunteers provide a Community based Advocacy Support Service that is much in need and delivered with care, dedication and enthusiasm.

Due to Covid 19, they are currently unable to provide this service but this has not stopped them from continuing to be interested in how our service is adapting and as a resource for consulting about how we move our service forward in difficult times.

They are a great bunch of people that I thoroughly enjoy working with. As I started off my career with AdvoCard as one of the volunteer team, I can honestly say that they are as important members of staff as any of my paid colleagues. Indeed 8 of my current colleagues started off as AdvoCard Volunteers so we take them very seriously!

You guys are great! I can’t wait until we can all work and meet up again!

Thank you!

Paul McInneny,

Volunteer Coordinator,

(Former Volunteer Advocacy Worker.)

Read our submission to the Review of Mental Health Law in Scotland

Submitted on 29th May 2020

This response has been drawn from the views and experiences of Independent Advocacy workers working with individuals who are subject to compulsory measures under the Act. We had hoped to consult with the individuals themselves but due to restrictions currently in place, timescales did not allow. We hope to have an opportunity to submit responses from individuals who have been subject to the Act at a later date in the process.

The Mental Health (Care and Treatment) (Scotland) Act 2003 (“the Act”) came into force in 2005 – how well does it work at the moment? Are there certain things that hinder the Act from working effectively? What would improve things?

The Act brought with it many improvements over what existed previously, its focus on the rights and inclusion of individuals, were very welcomed, as was the addition of a statutory right to independent advocacy, and a focus on participation at all stages. The principles and safeguards that were included were a massive step forward and aimed to provide support and care in the most informal way possible, putting the individuals wishes, and those of their carer’s, at the centre of the process. It has provided a robust system of response to people who may require care and support, often at very difficult, traumatic and distressing times in their lives. But, it allows for some of our most basic human rights to be limited, sometimes for years, and therefore carries a significant burden of responsibility to be proportionate, fair and accountable. Therefore, there is a need to update not just the Act itself but also how the principles of the Act are applied in practice.

In order for some of the rights that were included in the Act to be realised, and have true meaning, there should be more parity amongst all those involved in the decision making process. For example, true participation should include elements of influence and control over the decisions that are affecting someone, not simply just being able to be heard. Including these principles and rights in the day to day application of the Act, is one of the challenges that individuals and practitioners face. In more recent times the principles seem to have been overshadowed by the criteria, and often are only tested during tribunal proceedings.

Participation

We have seen large variations in practice over time, and rather than ensuring equal treatment, the Act depends on good practitioners, clinicians, and conveners to apply consistency. For example, it is often a tribunal convenor who sets the tone for proceedings, and can have a major role in how things progress and how much people participate.

Lack of funding has also had a detrimental impact on the functioning of the Act. Over time, we have seen the pressures on services continually increase resulting in a reduction in service. We see professionals being unable to attend tribunal hearings, which still go ahead, and at times this has affected patient appeals, more than applications. It is particularly felt around 2-year review tribunals where extension & variation of Community Treatment Orders is sought.

We have also experienced a reduced availability of clinicians over time, to include patients and their independent advocacy workers in the care planning processes. There is a danger of this barrier leading to people becoming apathetic towards involvement in the process and disengaging with the process. This is more likely when their will and preferences are overridden, sometimes including their Advance Statements, with little in the way of external accountability, other than notifying a third party.

These pressures have also impacted on independent advocacy services, and our availability over time has been affected. Like many other services we see an increase in referrals year on year, with no increase in funding. Referrals to independent advocacy under the act, can be very variable, and often rely on the practices of individual workers. In addition, many independent advocacy services are having to prioritise statutory work over informal work, which was never the intention of the Millan committee, who envisaged access to independent advocacy to include informal care.

The current arrangements include a duty to ‘secure the availability’, and ‘take appropriate steps to ensure…the opportunity of making use of’ independent advocacy services. We feel that this is open to wide interpretation and we would like to see a simpler duty to refer in any future act, along with provisions for independent advocacy to those receiving informal care.

Supported Decision Making

The Act allows for substituted decision makers to override someone’s will and preferences and is done from a best interest standpoint. At times, we see very valid personal preferences being substituted with little or no standards in place around the best interest decision. There is an impetus for wholescale systemic change away from substitute decision making systems. We would like to see the Act brought into alignment with the UNCRPD, specifically around support to exercise legal capacity.

Independent advocacy is ideally placed with regard to enhancing the supported decision making process. Independent advocacy workers will commonly spend time supporting people to understand their choices, gain information, and make independent decisions, to try and reduce barriers that may exist around them.

Although we would like to see a more formal approach to supported decision making in any future acts, we feel that it should not be limited to an independent advocacy relationship. Evidencing the support around decisions by all practitioners, should be included as part of the principles or criteria when considering interventions.

Diagnostic focus

Independent advocacy partners often feedback to us that the Act seems to be diagnostically led, and focussed on symptoms. At times, this can feel parallel to the reason why the compulsion, or intervention, is being sought, which is often focussed on someone’s functioning. It can add to some people’s distress and experience of trauma when subject to the Act. It may also lead to an over reliance on medical evidence, or opposing medical evidence, which can lead to increasing power imbalances, and does impact on therapeutic relationships. At times, when practitioners are having to give evidence around risks, we often see quite historic risks being discussed in the context of diagnosis, which could arguably be unrelated to the current circumstance and need for intervention.

In other countries care can be overseen by different types of clinicians, not solely medical practitioners, a move to using responsible clinicians may also support a more biopsychosocial approach to care.

At worst, we have seen people excluded from support because they do not fit any diagnostic criteria, despite having considerable mental distress, who have gone on to complete suicide. It is vital that the focus of a future Act is shifted away from diagnosis and moved towards assessing individual capacity to function safely, and the need for intervention around this.

Reciprocity

The Act provides for support and treatment, but at times this is heavily contingent on

resources. Pharmacological treatments are always available under the Act, but we would like to see options around non-pharmacological treatment choices included. We see considerable resource issues when it comes to care packages, support services, housing availability, and access to psychological services. The principle of reciprocity is seriously undermined at times, and there is currently no ability under the Act to enforce it.

Lack of funding in services often results in decisions being made based on what services are available rather than meeting individual need. This can result in compulsory admissions being prolonged due to problems finding suitable support services to discharge to or individuals being discharged without adequate support.

Recorded matters can only go so far in furthering these issues, and we repeatedly see recorded matters about resources return to tribunals unmet, sometimes over years. There is no provision for recorded matters for individuals subject to Compulsion orders, which further impacts on reciprocity for these individuals. The tribunal is unable to take further action on this, and often everyone is stuck with no resolution.

We would like to see any future acts include provisions to fulfil this principle, potentially to include a new appeal if resources are not available, akin to an excessive security appeal. This would allow individuals who are genuinely ‘stuck’ due to resources to have orders made, and to be enforced, or otherwise have further legal recourse.

MHO availability

We have seen increasing demands placed on MHO’s over time, with considerable pressure coming from the Adults with Incapacity Act, due to private Guardianships. This has understandably had an impact on their ability to fulfil their duties as they have done previously.

There is a trend for lower rates of MHO consent for Emergency Detention Certificates throughout the timeline of the Act, and a general overall trend over the past 10 years of decreased MHO availability. This can be particularly noticeable during the first few weeks of a STDC, and it is not uncommon for a newly allocated MHO to meet someone for the first time in relation to a STDC appeal.

Are there groups of people whose particular needs are not well served by the current legislation? What would improve things?

Some groups may benefit from further safeguards, and particularly those who are subject to detention for long periods of time. This can have significant impacts on someone’s normal social functioning and ability to participate in society. We see good practices, in well funded units, which are able to provide longer term occupational, and recreational therapies, focussed on the individual’s wishes, which includes vocational activity. Unfortunately, we see other areas, with less funding where this is not possible.

Commonly in this group the use of compulsion may only be reviewed by the tribunal every 2 years. It would be helpful to see additional safeguarding criteria included at these stages. One of the principles in the Adults with Incapacity Act s1(5), places an onus on those exercising functions, to encourage the adult to exercise whatever skills they may have, and to develop new ones. We feel that this could be further developed to include other groups, and to be strengthened to a level where it can be legally tested.

We were encouraged when appeals against conditions of Medium Security commenced, as a number of our independent advocacy partners had been frustrated at the lack of remedy for their circumstances. We continue to see similar frustrations currently in people who are subject to conditions of lower security, again with no remedy or recourse to appeal.

Individuals subject to both the Act, and the Criminal Procedures (Scotland) Act, have at times questioned whether they are having a fair hearing. This is particularly relevant when an examination of facts is considered, due to an assessment of someone’s ability to participate in proceedings. This does not happen under the civil applications, where a curator is appointed, and the individual is still able to participate, and be heard during proceedings. We would like to see increased involvement of the individual and independent advocacy in these settings.

We continue to see individuals who are impacted by restrictions, but who are informal. In the worst cases it has been argued that deprivations on liberty have not been backed by a legal framework. This is not just reserved for people living in care settings, but can extend to people living at home subject to measures in their own homes

The Act has a set of legal tests to justify making someone subject to compulsion. Would you suggest any changes to these?

The difference in criteria between people on civil orders, and those on compulsion orders, needs to be reviewed. The lower level of proof is arguably discriminatory and it seems that unifying the criteria for both situations would resolve this. Where there is an option for a Sheriff to grant a Guardianship Order as part of their disposal, there is not one for a Compulsory Treatment Order, this could provide a more appropriate, less restrictive option, on disposal.

In relation to Restriction Orders, the issue of the unlimited timescale can seem overly restrictive in some cases. On the face of it, it seems as though the CORO is less restrictive than those subject to custodial sentences, who may go before a parole board and be released on licence. For some of those subject to COROs it can be difficult to understand how the restrictions remain as necessary, especially when people have lived in the community for many years without offending and where the passage of time since the index offence far exceeds any criminal justice disposal or tariff. We would like to see the tests around the continued   necessity strengthened.

We would like to see more importance given to the current principles of the act, potentially to become criteria or tests in their own right.

The Act requires a local authority to provide services for people with a mental disorder who are not in hospital, which should be designed to minimise the effect of mental disorder on people and enable them to live as full a life as possible (sections 25 and 26 of the Act). Do you think this requirement is currently met?

There is strong anecdotal evidence that, due to lack of funding, support services are overwhelmed by the number of referrals.

Independent advocacy workers report seeing increasing numbers of individuals discharged to poor social circumstances, unchanged from time of admission, or alarmingly, to worse circumstances than at admission.

It is often the case that those who are assessed as having a moderate level of need in the community, and are not subject to compulsion, are likely to have a severely reduced package of care and support that is not appropriate to their needs. This can often be no more than 2-6 hours of housing support each week   from voluntary sector providers. In addition, support is typically funded for a maximum of 6 months in the first instance and is often not extended, regardless of the unchanged support needs of the individual. This cycle of short-termism creates a system where the needs of the individual are far from central to decision making processes, as all decisions are made based around availability and cost of services.

The lack of funding in support services has led to an environment where support services are struggling to fulfil support packages and retain staff. Low wages are normal, with support services reporting that vacancies can be difficult to fill and long-term absence is common. This impacts on continuity of care and many have become fatigued by such a “revolving door” system and have disengaged completely from this undignified approach to support. There is the risk that this will result in many individuals going onto experience a deterioration in their mental health and becoming less likely to seek support and re-engage with services.

We are concerned at recent developments, where the Act is used as a ‘passport’ to services. We have worked with informal patients who have been placed on orders, in order to get them access to treatment, and with individuals subject to compulsion, asking to stay on orders, as they would otherwise lose their support. This goes against the principle of informal care, on a backdrop of an increasing use of compulsion. At times there can be issues around funding related to this, as compelled support is not means tested, but informal care can be.

Reliance upon self-financing for informal support packages in Edinburgh has created a two-tier support sector. Which unfairly discriminates against an individual whose needs are not assessed as being critical. This leads to a fear of recovery and has at times led to situations where individuals who have previously opposed CTOs, refuse to contest them, as they could not afford to pay for the care that they receive on an order. We would welcome free support to all, informal or otherwise.

Does the law need to have more of a focus on promoting people’s social, economic and cultural rights, such as rights relating to housing, education, work and standards of living and health? If so, how?

We would welcome any changes that would bring about increased access to these rights. The removal of mental health services from The Patients Rights (Treatment Time Guarantee)(Scotland) regulations, which would have allowed a maximum wait of 18 weeks from referral to treatment, can only be discriminatory when it comes to a right to health, and a right to mental integrity. Access to priority housing, supported accommodation and residential care has to become more enforceable through legislation. We have seen good use of legislation in the forensic system, through excessive security appeals, which has led to increased resources becoming available over time.

Do you think the law could do more to raise awareness of, and encourage respect for the rights and dignity of people with mental health needs

We were pleased to see the Scottish Government campaign and commitment to training 5000 non mental health front line staff in recognising psychological trauma, with the additional aim to promote a wider awareness to include trauma informed workplaces. Training on this level with a wider scope around mental wellbeing, support and public awareness of mental health legislation would be  very helpful

Based on your experience, are there any difficulties with the way the 3 pieces of legislation work separately or the way they work together? What improvements might be made to overcome those difficulties?

There are times when the 3 acts can work well together, and in particular there is a mechanism to enquire and support people who may need it in a variety of difficult circumstances, under different timescales. It can often be very helpful to have different decision makers using different legislation, as the potential for conflicts of interests is high under these situations.

Independent advocacy has been explicitly included in all 3 acts, but in practice we see very different referral rates and patterns across the acts. We would prefer to see the same duty to refer in all the acts, to simplify, and improve access to independent advocacy.

When individuals are subject to various acts at the same time, the legislative burden is too great. This proves to exclude people from engaging and participating, and it is not uncommon for individuals to ‘give up’ during long legal processes.

Sadly, we find that there is considerably less uptake by individuals to involve themselves with Court processes under AWIA, despite major efforts by the Courts to develop practice and improve access. It is very hard for some people to read and digest MHTS applications and reports, but almost impossible for individuals to fully understand what might be included in a set of papers for a Guardianship application. The MHTS tribunals are, by their very nature, setup to be more inclusive but they are also limited. We would prefer to see an overarching tribunal service with more ability to enforce orders such as directions, recorded matters, and issues that relate to resource availability.

The inclusion of non means tested legal advice, assistance and representation for Mental Health Tribunals was a major step forward in accessing a fair hearing, but the fact this is not mirrored with all of the AWIA cases has led to people not opposing applications, when they wanted to. In the most extreme cases we have worked with individuals subject to a financial guardianship, who wished to oppose it, and would have needed to get financial agreement from their guardian, in order to pay for legal representation to challenge the guardians current role. This conflict is not seen under the MHA, where an individual can contact the tribunal directly, on their own, with no other support, and a hearing can be convened at no cost to them.

Overall, Unification of the 3 acts would be another major step forward, and we have seen examples where the 3 acts can work ‘against’ someone. For example if a court is waiting on a tribunal decision, or vice versa, to make a decision themselves. It would also mitigate the use of the MHA as an emergency intervention, when AWI guardianships are what is required. It could also allow for a common care coordinating role to be developed, which is often needed with very complex care which currently utilises 2 or 3 acts together but can be managed by a number of different professionals.

Is there anything else you wish to tell the Review?

We have found that the use of DWP appointeeships to manage funds is very commonplace, but it is not possible to appeal them, or have any external oversight. We have also never had a response from DWP in relation to concerned individuals wanting a review of these arrangements.

Given this falls out of the scope of the current 3 acts, but plays a significant role in restricting or managing someone who is deemed incapable, we would like to see some way of providing oversight of these arrangements included in any future acts that involve management of funds. We often see people who are worried that no longer being subject to the Act will affect their eligibility for welfare benefits at the same rates, as they believe their needs will be assessed as being lower.

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

(AdvoCard Community Collective Advocacy)

UPDATE: Deadline extended to Sunday 16th 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 16th 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