Figure 2: Types of change which can be assessed in relation to human rights There is a complex and interconnected relationship between these different types of change25, 26. The changes may occur for service users, staff, carers and advocates or at the level of the team or organisational culture. Effectiveness of Community Learning Disability Teams The role of CLDTs initially involved coordinating and gate-keeping the services and resources available to people with learning disabilities5. More recently, CLDTs have evolved to provide coordinated high-quality healthcare services for people with learning disabilities which enable them to engage in activities of everyday life27. CLDTs aim to ‘provide the right level of intervention and support to enable people to achieve maximum independence and control over their lives28’. However, it is widely recognised that delivering a service for people with learning disabilities who have complex behavioural, mental or physical health needs (or a combination of these) as community team is challenging5. In the current economic climate, community learning disabilities teams are working within a ‘target driven culture.’ This requires CLDTs to prove both the quality and effectiveness of their service by meeting targets, usually demonstrated through outcome measures such as the Health of the Nation Outcome Scale-Learning Disability (HoNOS-LD) 29. An outcome is defined as an ‘end stage of an intervention’5 . In CLDT settings this usually means ‘problem behaviours’ have been ‘fixed.’ This reflects one of the difficulties with utilising outcome measures in this client group; the majority of outcome measures reflect process rather than the outcome itself29. For example, a CLDT intervention supporting a person to reduce their challenging behaviour, has a profound positive effect on the person’s emotional, physical and psychological wellbeing in addition to preventing the ‘target’ behaviour from occurring. Research suggests that it is very difficult to assess the effectiveness of CLDT interventions as practice is not standardised across teams5. Effective CLDTs should help people with learning disabilities enjoy better health outcomes and healthcare access, in ways which promote independence and inclusion. This should also involve reducing inequality so that people with learning disabilities can use mainstream
‘Getting it Right’ Standard One: Safety (Mapping on to CQC key question: Is this service safe?) This standard covers a number of key areas including: How well the CLDT works with primary care services The accessible information available about health conditions How well the CLDT identifies and supports people to overcome barriers to healthcare How well the CLDT responds to behaviour that is described as challenging How well the CLDT responds when they see restrictive practice How much involvement the CLDT has in delivering training and developing the competencies of others Area of health and social care Doing well Making progress This needs to be different Human Rights Impact Physical health Community team staff routinely share their skills, knowledge and experience with mainstream primary healthcare colleagues Barriers to good physical health are identified and addressed Assumptions are not challenged in relation to primary health care for individuals Article 8: Right to respect for private and family life Article 3: Prohibition of inhuman or degrading treatment Article 2: Right to life
Accessible information about health Accessible information about a range of health conditions is developed and used. This includes where to get support Some accessible information has been produced but is not widely available. Information is not accessible Article 8: Right to respect for private and family life Training others in physical health care training High quality bespoke training is provided as required to direct support staff, housemates and families in order to support individuals who have complex health needs. Generic training is provided No training is provided Article 8: Right to respect for private and family life Article 14: Prohibition of discrimination in relation to rights under Article 8
Responding to barriers in health care Person-centred health care assessments are embedded in the person’s journey with the service. Barriers to health care are identified and assessments are current, regularly reviewed and support is planned and undertaken Primary healthcare is regularly discussed with individuals, issues identified and support is proactively planned Reassessments are not carried out regularly. This is particularly an issue where the outcome has a direct impact on the person’s autonomy and quality of life. Barriers to healthcare are not considered Article 8: Right to respect for private and family life Article 3: Prohibition of inhuman or degrading treatment
When necessary, appropriate legal frameworks such as the Mental Capacity Act or Deprivation of Liberty Safeguards are used when the person does not have capacity to make a decision. Article 5: Right to liberty Article 14: Prohibition of discrimination in relation to ECHR rights, particularly 8, 3 and 5.
Positive behaviour support and reducing restrictive practice All CLDT staff are confident and skilled in challenging restrictive practice in all settings, including family homes. Safeguarding concerns are raised and followed through appropriately Most staff are skilled and confident in challenging restrictive practice and development plans and support is in place for others. Safeguarding training is regularly delivered Restrictive practice is unchallenged Article 8: Right to respect for private and family life Article 3: Prohibition of inhuman or degrading treatment Article 5: Right to liberty Article 14: Prohibition of discrimination in relation to other ECHR rights, particularly those under Articles 8, 3 and 5 Health education and training Opportunities are to educate Established groups have opportunities Staff are not sufficiently knowledgeable Article 8: Right to respect for private and family life
people who have learning disabilities about legal frameworks (e.g., the Mental Capacity Act or the Human Rights Act) that could affect their health and safety to learn about legal frameworks about legal frameworks and are unable to signpost people to information. Article 14: Prohibition of discrimination in relation to rights under Article 8
‘Getting it Right’ Standard Two: Responsiveness (Mapping on to CQC key question: Is this service responsive to people’s needs?) This standard covers a number of key areas including: How individuals and families are involved in decisions about their care and support The CLDT’s approach to risk assessment The CLDT’s approach to reasonable adjustments How any changes of support arrangements are planned and supported The CLDT’s role with people placed out of area How the team support parents who have a learning disability Area of health and social care Doing well Making progress This needs to be different Human Rights Impact Involving individuals and family members in decisions about their care and support Team members consider the use of medication in times of distress, ask appropriate questions and raise any concerns if required Team members are aware of the use of medication and share concerns if highlighted Team members do not raise concerns about the use of medication Article 3: Prohibition of inhuman or degrading treatment Article 8: Right to respect for private and family life Person centred All interventions are seen through Interventions take into account Clinicians make all of the Article 8: Right to respect for
Everyone knows how the person communicates and the best way to present information to them Team Working Team members play an active role in communication around an individual’s support and care and all communication is clear and appropriate Team members are fully involved in communication about the person’s support and care Information is not shared appropriately Article 8: Right to respect for private and family life Article 14: Prohibition of discrimination in relation to rights under Article 8
knowledgeable in their role and clear about their responsibilities knowledge, skill and confidence of direct and indirect support staff Transitions and out- of placements Transitions are well planned and team members are creative and aspirational about supporting people in difficult situations locally. Team members share this vision for the future and advocate for individuals with other services Transitions are generally well planned but vision for the future for individuals is not always aspirational. Where people are out-of-area, plans are in place to support them to return Traditional services are seen as the only services. People are sent away from their local area before every effort has been made to support them locally Article 8: Right to respect for private and family life
Supporting parents who have a learning disability There is excellent local support for parents who have learning disabilities which is well planned Support is ad hoc It is assumed that people who have learning disabilities do not make good parents Article 8: Right to respect for private and family life* Article 14: Prohibition of discrimination in relation to rights under Article 8
practices formulations and interventions and person-centred. All team members are skilled in using person-centred practice and able to coach others skilled and confident in using person-centred practices and share this in other settings routinely used private and family life Information recording All information is respectfully recorded and stored and shared appropriately Information governance systems to protect confidentiality are in place but staff are unfamiliar with procedures and errors are made Individual’s information is accessible to people who do not need to see it Article 8: Right to respect for private and family life Sensitivity and difficult questions Team members are confident and skilled in asking sensitive questions (for example, regarding Skills raising sensitive issues are variable and development plans are in place to support staff with this Team members avoid asking sensitive questions Article 8: Right to respect for private and family life
‘Getting it Right’ Standard Four: Good Leadership (Mapping on to CQC key question: Is this service well led?) This standard covers a number of key areas including: The education and training is provided to individuals and families How individuals and families are involved in staff recruitment in the CLDT How integral human rights are to the work of the CLDT How the views of individuals and families inform the development of the service Area of health and social care Doing well Making progress This needs to be different Human Rights Impact Raising awareness, education and training Attention is paid to supporting people and their families to develop skills and knowledge to help them to be healthy and well individually and in groups Some established groups offer education and awareness opportunities Proactive education is disregarded Article 8: Right to respect for private and family life Article 14: Prohibition of discrimination in relation to rights under Article 8
Staff recruitment Individuals and families are actively involved in recruiting staff into the service and have an equal say in staff appointments Individuals and families sit on interview panels There is no involvement of individuals and families in staff recruitment Article 8: Right to respect for private and family life Article 14: Prohibition of discrimination in relation to rights under Article 8 Centrality of human rights The service has an intentional and active human rights focus and much of this work is co-produced with people using the service. Team members have an understanding of human rights law and how this should inform their day to day practice Knowledge of human rights is variable and not seen as core to the work of the team Section 6 of the HRA (the legal duty to comply with the rights in the HRA). In addition, as a public authority we have a positive obligation to take a proactive role in protecting the human rights of those we serve. Article 14: Prohibition of
discrimination in relation to other rights in the EHRC Involvement in designing and developing services Individuals and families are actively involved in designing and delivering general and bespoke training Individuals and families take part in training on an ad hoc basis There is no training that involves individuals and families Article 8: right to respect for private and family life Article 14: Prohibition of discrimination in relation to rights under Article 8 Service evaluation and feedback Individuals and families are supported to regularly contribute their views about Questionnaire and surveys are administered to evaluate the service provided No effort is made to review the service from the perspective of service users Article 8: right to respect for private and family life Article 14:
Personal relationships and sexuality People are viewed as individuals and their sexuality is acknowledged and respected. There are groups for people to choose to attend People are asked blanket questions about their sexuality at assessment but this is not considered further e.g. at intervention No attention is paid to the individual’s sexuality Article 8: Right to respect for private and family life Article 14: Prohibition of discrimination in relation to rights under Article 8 Culturally appropriate services People’s cultural identity is taken into account systematically and assessments are culturally relevant People are asked blanket questions about their culture and identity at assessment but this is not considered further e.g. at intervention Assessment materials are generic Article 8: Right to respect for private and family life Article 9: freedom of thought, conscience or religion Article 14: Prohibition of
discrimination in relation to other rights in the EHRC, particularly those under Articles 8 and 9 Person- centred outcome measures Staff are skilled in using outcome measures which are completed involving the person themselves A variety of measures are used in a highly standardised way to measure change Outcome measures are not routinely used Article 8: Right to respect for private and family life Case examples These are illustrative examples of ‘good practice’ and ‘practice which needs to improve’ set against some of the ‘Getting it Right’ standards. We have not included examples for each
Appendix One: ‘Getting it Right in Services’- Suggested agenda for review day Time Activity Outcome Resources needed 10.00 Welcome and Introductions Everyone is clear about the plan for the day 10.05 Getting it Right in Services : Introducing the toolkit and self evaluation Everyone is clear about what we are trying to do and has assessed their own knowledge of the Human Rights Act Brief self-assessment sheet and pens 10.15 Table questions: Small group work, ideally groups would include nurses and other health Everyone has an opportunity to contribute stories and examples and hear from each 5 tables set up with questions relating to one of the CQC indicators.
Who will do what, by when? How will we know how we are doing? Discussion re reviewing this action plan Everyone knows how this work will be reviewed 4.15 Self-evaluation, thoughts on the day and close Everyone has had an opportunity to review their knowledge of the Human Rights Act