A voice for the vunerable

The Mental Health Advocacy Project (MHAP) for older people is a three-year pilot project funded by the Department of Health and Age Concern England. Its mission is: “To develop, explore and evaluate a volunteer advocacy service for older people who may lack mental capacity.”
The project comes at a time when advocacy is thankfully being recognised more and more for the valuable role it has to play in people’s lives. Numerous policy papers have been published this past year referring to the need for more advocacy nationally (although at a local level, many advocacy services are struggling to secure and maintain funding, suggesting a gap between policy and practice).
A number of UK organisations are providing advocacy and are examining what it means to provide high-quality advocacy. Many new initiatives are being introduced in the advocacy sector and there are numerous changes happening within Health and Social Care more generally. These include:

The Mental Capacity Act 2005 (MCA) has introduced the statutory IMCA [Independent Mental Capacity Advocates] service, which is working within a non-instructed advocacy model;
Changes to the Mental Health Act 1983 will result in a new IMHA [Independent Mental Health Advocates] service in 2008;
A new national advocacy qualification will be introduced in 2008;
Action for Advocacy has begun work on an advocacy quality mark, which will take shape throughout 2008;
Advocacy Consortium UK has started to consult the advocacy sector on drawing up a national framework for advocacy – attempting to ?join-up’ the sector in a meaningful way;
Individual budgets are re-focusing the way that care is funded and delivered.

The MHAP in the mix
The MHAP is uniquely placed to contribute to the ongoing debates about what high-quality advocacy looks like. Many people are concerned about the perceived ?professionalisation’ of a role that they believe is rooted within the values of a freely given relationship and that of active citizenship. The MHAP is one of many advocacy services provided by volunteer advocates, but working with a new piece of legislation (the MCA) and a developing picture, nationally, of what it means to provide non-instructed advocacy (NIA). The IMCA service, for example, has tight restrictions on who can have an IMCA and how NIA should be delivered. The MHAP pilots, however, have greater flexibility in provision and can helpfully explore and evaluate other ways of working that both complement the work of IMCAs and act as a valued voice in providing effective advocacy for people who by definition may not have asked you to be there (not instructed you) or be able to tell you what their wishes are. The MHAP is a pilot project. It hopes to be able to demonstrate that volunteer advocates have a valuable and unique role to play in the delivery of effective advocacy for older people and thus be a respected and integral part of the advocacy continuum.
The MHAP is now in its second year and has many challenges to face including:

Recruiting, training and supporting
60 volunteer advocates for a specialist role;
Retaining volunteer advocates;
Developing trust and credibility;
Exploring what effective NIA looks like for older people and how this can be delivered by volunteer advocates.

The MHAP has an opportunity at a crucial time of change:

To be a valued voice for older people who lack capacity;
To share the learning and good practice that emerges;
To contribute to ongoing debates about the challenges of this work.

Who will it be for?
The MHAP is developing a volunteer advocacy service across four pilot sites for older people who may lack mental capacity. Lacking mental capacity in this context is, as defined in the Mental Capacity Act, time and decision specific. Problems can arise with mental capacity in older age because of a variety of illnesses and conditions – for example, organic illnesses (dementia, functional illnesses) and depression, as well as brain injury, stroke and learning disability, to name a few. The MHAP will be providing advocacy for those older people who have issues with mental capacity, whatever the cause. The pilot nature of this project allows for flexibility in the provision of the service.

Aims
Why does the MHAP exist and what changes are we hoping to bring about as a result of this project?

1. To enable older people who lack mental capacity to access a high-quality advocacy service;
2. To enable volunteers involved in the delivery of advocacy to be knowledgeable, skilled and confident, and to have a positive experience of providing advocacy to older people who lack mental capacity;
3. To ensure providers and commissioners of advocacy services receive the learning and good practice from the MHAP (including local ACs, IMCAs and generic advocacy services);
4. To increase communication with key campaigners and policy makers about the issues faced by older people who lack mental capacity.

The story so far
The MHAP started in October 2006 and is scheduled to finish with an end of project conference in October 2009. A great deal of work has taken place in the first year both nationally and locally, to set up this innovative volunteer advocacy service, including recruiting four Age Concerns from the 23 that applied to take part in the project. The four pilot sites enable the project to work across three different geographical regions – South East, West Midlands and North West – with rural and urban populations and with black and minority ethnic groups.
The MHAP is being independently evaluated by Frameworks 4 Change. The central challenges faced by the evaluation team will be:

What does a high-quality advocacy service for older people who lack capacity look like?
What makes a volunteer advocate knowledgeable, skilled and confident enough to deliver this type of advocacy and enjoy doing so?
What are the key issues that older people who lack capacity face?

Pictured on page 25 are representatives from the four pilot sites, the project co-ordinator and Andy Bradley of Frameworks 4 change, from the Evaluation team at the first Pilot Sites Network meeting in April 2007.
Year one also involved the establishment and development of three key management support structures for the MHAP, meaning that the first year was very much about setting a strong foundation. Within the first year, it became clear that the MHAP needed to consolidate the good practice, which was acknowledged and used both nationally and locally, in specific MHAP documentation. Thus, the following documents have been produced, which guide the projects and are a useful resource:

MHAP Evaluation Framework – developed by the Project Reference Group. This document outlines the detailed outcomes, information collection methods and reporting methods;
Volunteer advocate guidance pack for MHAP projects – detailing volunteers and the law, policies and procedures, volunteer recruitment and selection, volunteer training and support;
A resource pack to aid advocacy delivery – which further explains what the MHAP is and is not, referral criteria and checklist, engagement protocol, MHAP quiz and example case-note recording.

These resources are available on the MHAP web page at www.ageconcern.org.uk/ageconcern/mhap.asp.

The volunteer advocates
There has been considerable success in recruiting volunteers for this specialist advocacy role. At the end of October 2007, six months after starting as pilot sites, there were 25 trained advocates across the four projects. Volunteers that have come forward to the MHAP have included people who were already linked to other initiatives in Age Concern, as well as individuals new to the organisations. These include people who have retired from health and social care roles, and others who are still working in other sectors, such as banking. Volunteers have said that they have been attracted by the opportunity to be involved in the national pilot at the start, and the chance that to ?give something back’. Volunteers have also said that it is an interesting chance to be part of something that is not set in stone – the emphasis on the work of the pilots being very much an exploration of what works and what doesn’t.

In practice
To help in its advocacy role, the team has developed an engagement and evaluation tool called ?building a picture of your life’. This tool is to be used by volunteers to aid the relationship with the person receiving the advocacy. It provides the advocate with a range of questions as prompts for eliciting information about the following areas of that person’s life:

1. How I spend my time;
2. My culture and beliefs;
3. Where I live;
4. What I need help and support with;
5. Who the important people in my life that I trust are;
6. My current views, wishes, and choices;
7. My health;
8. My past;
9. My communication;
10. My advocacy issues;

The volunteer advocates receive detailed information about the use of ?building a picture of your life’ and other supplementary tools that can be used to aid the gathering of information about their client. One is talking mats, a low-tech communication framework that uses a mat with pictures (or ‘picture symbols’) attached as the basis for communication (see further below). The advocates use the tool both to assist in the initial engagement with the client as well as to capture a ?life snapshot’ when the client starts with the advocate. It can then be repeated at a later stage to see what has changed.

Case example
One of the first referrals to the MHAP was for a lady in residential care who has dementia. This lady had only recently been placed in the care home by the local social services with the assistance of the new Independent Mental Capacity Advocacy (IMCA) Service. The lady had expressed a wish to live in a place overlooking the sea. The care home contacted the MHAP for an independent advocate when it came to light that a family member, who had not previously been known to the local social services or IMCA, had made herself known to the care home, .The family member lives in a different part of the country and was very unhappy with the fact that her relative was now living in this care home and wanted her to be moved to a care home closer to their home. This would enable them to visit her more often.
The volunteer advocate started seeing this lady twice a week to try to establish communication and a relationship with her adopting a person-centred approach. Working in a person-centred way takes time as it involves gaining a deep understanding of what is important to that person.
The volunteer advocate has been using the ?building a picture of your life’ tool to establish the important issues, the lady’s communication abilities, and what her views may be. In addition to this, they have been using the talking mats communication aid on several visits. The volunteer advocate has taken photos of the home and surrounding area and laminated these onto palm-sized squares. These and other pictures that focus on aspects of life in the home are placed on a mat by the client under things she is ?happy about’, ?not happy about’ and ?not so sure about’. This tool has been effectively used to aid communication with people with dementia. The volunteer advocate has used the talking mat on numerous occasions to establish what the lady’s views are on the home, in order that these views can be expressed to the home and to others. Initial work has indicated that the lady is happy with the home. The next step for the volunteer advocate is to visit the alternative home to which the family have proposed the lady be moved, and again attempt to establish her views on this as a potential place for her to live. There is also a multi-disciplinary meeting being convened by social services to discuss the possible alternatives and what action, if any, should be taken.
This example is interesting as it highlights a number of points:

1. There are care-home staff who are aware of advocacy and the valuable role it can play;
2. The IMCA service is a new service, and people are still getting to grips with what should constitute an IMCA referral, particularly the issue of ?appropriateness’ of family members. The restrictive nature of the IMCA criteria means that this referral could no longer be dealt with by the IMCA service once the family member was known to the care home. Many older people who may need an advocate but who do not meet the criteria for the IMCA service will be able to be referred to the MHAP at the four pilot sites. Similarly, there will be people who the MHAP will refer on to the local IMCA service, or indeed other advocacy providers when necessary;
3.Working with people with dementia who have capacity issues as well as communication difficulties is challenging work that takes time. The volunteer advocate is still visiting this lady twice a week to establish her views on the potential move and to ensure these views are acknowledged, to guide decision making at the multi-disciplinary meeting;
4. The MCA has, in this case, been the driver behind this lady being involved in the key decision in her life (where to live) and her being able to meet an independent advocate, who can help her identify and express her wishes. The MHAP, in working with the MCA and the code of practice, has an opportunity to empower older people who have all too commonly not been part of the important decisions that affect them or have had no one to air their voice or make an attempt to get their opinion;
5. There are people in our communities that are willing to give their time freely to stand alongside an older person, to try to get to know them and be able to advocate for them.
In a time when much is said of social disintegration, this is a very valuable message;
6. A reflective practice is an important part of the advocacy process in constantly reflecting back, for example, on what information has been collected, how, and by whom.

Discussion – challenges and opportunities

Time
It takes time to build relationships with older people who lack mental capacity, particularly if working in a person-centred way. Volunteer advocates have a valuable contribution to make in working in an in-depth way with a client over a long period of time. Conversely, there will be occasions when there will be an urgent need for an advocate. The flexibility of volunteers may be a positive factor in helping to address both demands. Some volunteers may not want to work in a person-centred way and may prefer to work in a crisis advocacy approach, where they may see an outcome of their input more readily. Ultimately, the local project manager at each of the pilot sites has the difficult task of matching up referrals with volunteer advocates.

Power and choice
In a traditional advocacy relationship, the client instructs the advocate. In cases where the client is deemed to lack mental capacity, the advocate may not have consent to be there or have a clear idea of what their client’s wishes are. This approach to advocacy has been labelled as NIA. The powers and choices in a NIA relationship are different from that of a traditional advocacy relationship. This is a challenging and controversial area for the advocacy movement as there is no agreed definition of what constitutes NIA or how it should be effectively provided. Differing approaches to this work are being explored by various advocacy providers. The MCA highlights a ?best interest’s checklist’, and a best interest approach is one way of working when there is little or no communication with your client. However, it resides on the assumption that ?what I would have wanted in the past will guide what I may want now’. This can be problematic. For example, if an older lady who has been abused by her husband over many years loses mental capacity to decide where to live, then is it in her best interests for her to stay at home with her husband or to move? The factors that motivate us and inform our wishes and actions are not fixed and are complex. Also, different people will have different views on what is in this lady’s ?best interests’, possibly leading to conflict. Advocates can use a range of approaches including person-centred and a rights-based approach (there are broadly five main approaches to NIA work) to ensure that the framework set up by the MCA is adhered to, the issues can be made clear and, ultimately, can be tested in court.

Status of volunteer advocates
Developing a trusted and credible service is a challenge that any service faces. Volunteer advocacy is not new, but volunteer advocates working with the MCA is. As mentioned earlier, there is the statutory IMCA service as well as the pending IMHA service coming into force in 2008, and the development of an advocacy qualification and advocacy charter mark to mention a few of the initiatives under way. Volunteer advocacy is uniquely placed along the advocacy continuum and the MHAP has a unique opportunity to demonstrate that volunteer advocates can work effectively alongside statutory advocacy. The challenge as much of these initiatives develop is of clarity – for those receiving the advocacy, those delivering the advocacy and those that need to refer someone for advocacy. The MHAP and all the above initiatives are working towards the same goal of delivering more high-quality advocacy.

Boundaries
The MHAP is adopting a reflective practice to review and examine what is taking place under the banner of advocacy. Many advocates get involved in all sorts of things that are not advocacy (from hanging up curtains for the winter to going to the post office). Often, this is driven by necessity and advocates are good at seeing solutions to problems where others do not. But the aim within the MHAP is to remain as close to our task as possible, while keeping in mind that ?pilot projects are allowed to be pilots.’ We are all learning, and there may be some valuable messages around boundaries and the value volunteers bring to the advocacy relationship that the MHAP will aim to take on board.

Volunteer retention and support
The MHAP is aiming to recruit and train 60 volunteer advocates across the four pilot sites. Key to the retention of these volunteers is being clear about the role at the recruitment stage, having a selection process, and providing timely and effective training and support. We have to listen to what the first volunteer advocates tell us about their experiences with the MHAP, then develop and change to match their needs. Initially, the first volunteers have asked for group support, but as the projects develop we will be offering a range of supportive practices.

Conclusion
The MHAP is a timely project that is well placed to explore the role of volunteer advocacy with older people who lack mental capacity. We are piloting this service in four locations in order to create the widest range of learning from these four sites about what works and what doesn’t. There are many challenges ahead of the MHAP up until 2009. In addition to those mentioned above, there is the issue of sustaining the service beyond the end of the funding into 2010. But the central opportunity of this work cannot be underestimated – older people who lack capacity, who have previously been excluded from decision making, who have been neglected and abused and disempowered, now have a voice with the MHAP. Our ongoing work will focus on how this form of advocacy can be made more widely available.

Neil Mapes is Mental Health Advocacy project co-ordinator, National Development Division, Age Concern England. He can be contacted at neil.mapes@ace.org.uk or by telephone on 07767 693357.