Capacity to communicate Project A summary report Funded by the Department of Heath Capacity to Communicate Project Putting communication at the heart of advocacy Funded by the Department of Health, this three-year project (2006-9) was set up in response to the new role of an Independent Mental Capacity Advocate (IMCA) created by The Mental Capacity Act (2005). Sense wanted to ensure that advocates had a greater awareness and understanding of dual sensory loss and its impact on communication, so they would be better equipped to support and represent people. The project provided training and information, harnessing best practice around communication and advocacy for people who lack capacity and who have little or no formal communication, particularly deafblind people. Sense trained 136 advocates during the length of the project and provided information to approximately 60 families through workshops and meetings. Advocates found the training to be of great value and continue to use the resources Sense developed. These materials are free to download from the Sense website, where there is also specific information for families. Some of the training has also been incorporated into the Independent Advocacy Qualification. Key Findings from the Project As part of the training, advocates were asked to submit a written assignment. These case studies have given us valuable information about the nature and process of IMCA and what can be done to improve this relatively new statutory role, in particular developing better understanding, skills and processes around communication. “We wanted to ensure that advocates had a greater awareness and understanding of dual sensory loss and its impact on communication”. The impact of dual sensory loss IMCA schemes should identify and record people with (dual) sensory impairment because of the significant impact this has on communication and capacity. There were a number of cases, particularly in elderly people, where a dual or single sensory loss had not been identified and therefore not considered as hindering their participation or communication. This lack of recognition could, in some cases, have been adding to the person's incoherence and confusion and limiting their capacity. Case Study A 90 year old woman diagnosed with dementia was referred to the IMCA service regarding a change of accommodation. The IMCA was told that, although a little deaf, the woman communicated well and was articulate. However, she was unsteady on her feet and had deteriorating physical and mental health putting her at increased risk from falls and injury in the home. She had begun to withdraw from activities in the day centre she attended and her appearance had become increasingly dishevelled. Concerns were being raised about the woman staying in her own home and the decision centred on whether or not she should move into residential care. The woman told the advocate she was born in the area, liked living on her own and did not want to live anywhere else; she seemed to understand the consequences of this choice. The woman told the advocate she did not like people coming into her home to help her because people had stolen things from her in the past. She described some of the things that had gone missing, but the advocate noticed that these items seemed to be in the house. She started to wonder if the client could see her possessions clearly. The advocate asked for access to the woman's medical notes. There were numerous references to her being at risk of falls and her increasing inability to manage daily living. However, the advocate also uncovered in the notes that the lady was registered blind, which had gone unrecognised as contributing to her difficulties. Following the advocate’s involvement a comprehensive specialist assessment was carried out and a new package of care implemented. The woman received support in the morning to help her choose appropriate clothes and someone to help her prepare meals. She was supplied with practical items such as a talking clock and other aids to help her plan her day and assist with her daily living. She was also supplied with a talking book service and weekly news tape. At the end of the case, the social worker informed the advocate that the woman had blossomed and that she had witnessed the Mental Capacity Act working at its best. Skilled advocates Advocates benefit from additional learning and skills around communication in order to best support and represent the incapacitated person and remain person-centred. The role of an IMCA is to represent and support the person lacking capacity, to find out their wishes, beliefs, feelings and values. Communication is a fundamental part of the role of an IMCA. Advocates need to be: ? confident communicators, aware of the diversity and complexity of communication issues a person may present to them, and confident at communicating with those around the person; ? confident investigators, able to ask the right questions and gather the right information; ? confident evaluators, able to analyse and weigh up communications, observations and information, some of which may be in conflict with each other. Although not an IMCA case, this example demonstrates the impact of advocacy and the importance of communication in creating a person-centred approach. Case Study A man with severe learning disabilities who apparently had 'no communication' was referred to the advocate. His mother believed that he was unhappy in his present home and perturbed by another resident who had in the past physically assaulted him. His behaviour had deteriorated recently becoming challenging, and he had developed an obsession with drinking tea. The staff at his home, although investigating any underlying health problems, had not made in-depth attempts to find out why his behaviour had changed. The advocate identified the man’s communication was based on gesture and expression. He was able to indicate what he wanted to eat, when he wanted to go out and when he was enjoying something. The advocate used pictures, symbols, and Intensive Interaction - using the noises, expressions and gestures the man used - to begin to establish communication. In addition, she used observation, investigated records (discovering the client had no person-centred plan) and asking a range of questions about his quality of life. The advocate established things the man liked, in particular his enjoyment of outings. The staff ratio meant that he was unable to do this very often. Some alternative homes were found and the man was supported to visit them. The advocate investigated the level of communication skills staff had at each prospective placement and their approach to non-verbal communication. Many of the alternative residential homes also had similar problems with staffing ratios which would hinder the man in pursuit of his outdoor visits. The advocate investigated supported living as an option. The supported living staff all had training in person-centred planning and made a commitment to Intensive Interaction. The advocate secured this option and the outcome was very positive. The man now lives independently with 24-hour support, his obsession with tea-drinking has decreased, he can engage with staff, communicates when he wants to go out and enjoys frequent outings. As a result his challenging behaviour has decreased and his quality of life improved. “Improved understanding and skills around communication can help ensure advocacy remains person centered.” A systematic approach Advocates benefit from developing a systematic approach to enabling participation and communication and to the advocacy process in general. Non-instructed advocacy demands integrity, rigour and accountability. Advocates must be thorough in their evidence gathering, questioning and observation. They must look for evidence when applying meaning to non-verbal communication. By doing so, they can help ensure a participative approach to non-instructed advocacy. Case study A 37 year old woman with mild learning disabilities and bi-polar disorder was referred to the IMCA service. The place where she lived was unable to meet her increasing needs and the decision concerned the change of her accommodation. The advocate established who the decision maker was, whether the woman referred had any friends or family, evidence that a capacity assessment had been carried out, options available and the timescale. A learning disability nurse had carried out the assessment and repeated it again in the advocate's presence to demonstrate the woman's level of understanding and mode of communication. The advocate identified key people to speak to, records to gather, and questions to ask. She planned the aims of her visit to the woman which included gathering evidence of her level of participation, her level of understanding, her capacity for intentional communication and to identify which issues were essential to her well-being. In direct communication with the woman, the advocate used short simple sentences, closed questions, and visual aids which helped identify that the woman could indicate preferences about tangible objects. After the meeting the advocate wrote a summary of the key points of the woman's level of understanding and patterns of communication. These included: how she used eye gaze, gestures, proximity, and behavioural reactions. The advocate explored her interpretation of the woman's behaviour against that experienced by nurses and support workers to identify any consistent patterns of communication. The advocate explored all the relevant notes and records and spoke to all key professionals involved. She identified the woman's need to be near a specialist learning disability team and that she benefited greatly from one-to-one interactions and social stimulation. When writing her report she used the evidence gathered and documented. She suggested the decision maker retain as much of the woman's current lifestyle as possible and that any transition to a new home be done gradually with the optimum degree of choice, involvement and control by the woman. Supporting individuals to make decisions Decision makers need greater awareness of the Mental Capacity Act and their role and responsibilities under it, particularly with regard to enabling participation of the incapacitated person in the decision making process. The Mental Capacity Act Code of Practice is clear that, before deciding that someone lacks capacity to make a particular decision, it is important to take all practical and appropriate steps to enable them to make that decision themselves. Throughout the project we have been aware that many decision makers need further understanding and increased skills in enabling client participation. This project has a short extension to adapt the training materials so they can be used for training health and social care staff. Case study An elderly woman was being discharged from hospital and concerns were raised about her accommodation and subsequent safety in returning home. When the advocate received the referral she was told a capacity assessment had been carried out. It took some days for her to speak to the social worker who could not identify a specific assessment had taken place. The social worker had no knowledge of the Mental Capacity Act and her duties under it. When the advocate tried to gain information about how the woman had been supported to participate in the decision making process and ways to communicate with her, she was hindered by the professionals' lack of knowledge of each other's work and their lack of understanding about supporting participation. It took 2 months after referral to gain useful information from professionals involved. Communication is fundamental to good advocacy. The Capacity to Communicate Project has provided training for advocates, information for families and a lasting legacy in the materials we have developed. Sense hopes that what has been learned from the project will also be used to improve practice and outcomes in Independent Mental Capacity Advocacy for those who are most vulnerable. The Project Team Angie Lee-Foster, Kirsty Burns and Joff McGill "Communication - with clients and professionals - is at the heart of all good advocacy practice" Capacity to Communicate This three year project was set up in response to the new role of an Independent Mental Capacity Advocate (IMCA) created by The Mental Capacity Act (2005). Sense wanted to ensure that advocates had a greater awareness and understanding of dual sensory loss and its impact on communication, so they would be better equipped to support and represent people. The project provided training and information, drawing on best practice in communication and advocacy for people who lack capacity and who have little or no formal communication - particularly deafblind people. About Sense Sense is the leading national charity that supports and campaigns for children and adults who are deafblind. We provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. In addition, we support people who have sensory impairments with additional disabilities. Sense, 101 Pentonville Road, London N1 9RG Tel: 0845 127 0060 / 020 7520 0999 Textphone: 0845 127 0062 / 020 7250 0959 Fax: 0845 127 0061 / 020 7520 0958 Email: info@sense.org.uk Website: www.sense.org.uk Charity No. 289868 April 2009