Mick Ward Head of Strategic Partnerships and Development (Older People and Disabled People) Debbie Keogh Eye Care Liaison Information Officer

Leeds Vision Strategy Programme Board - Purpose To act as a strategic partnership across health and social care To provide strategic direction, commissioning and service transformation To oversee respective sub groups

Leeds Vision Strategic Group Disabled People’s Strategic Partnership and Service Development Board Leeds Ophthalmology Service Re-Design Team Leeds Sight Loss Services Group Specific eye care pathway groups as appropriate Priority Groups Sub Group of the Strategic Commissioning Executive

Leeds Vision Strategy - Priorities Improving eye health through promoting eye examinations amongst at-risk groups (including in Super Output Areas, BME populations and older people) Developing the business case and service specification for an enhanced community eye care service

Priorities Improving the support available for people with sight loss, including reviewing services commissioned by Adult Social Care and providing support at the point of diagnosis

Priorities To use a social model approach to challenge the barriers faced by visually impaired people to independence, inclusion and equality

Information Prescriptions The right information at the right time

All public services should put the person who uses them at their heart. This applies especially to health and social care because all care is personal. ‘Our health, our care, our say’ Without information there is no choice. It gives patients the power and confidence to engage as partners with their health service. ‘Better information, better choices, better health’

The future Everyone with a long-term condition or social care need will be guided to reliable sources of information to allow them to feel more in control, better able to manage their condition and to stay independent.

Problem and solution Finding the information that you want at the right time can be difficult, although there are many potential sources of information 88% of patients wanted more information to make decisions and choices about their treatment or care 61% thought that being given more information about their health conditions would make a big difference...tailored to help people with long term conditions and carers receive information they need to manage the condition. …signposts to sources of information about health and care – eg Tel nos, website addresses. …include helpful and relevant information, for example about conditions and treatments, care services, benefits, and support groups. …will be given to people by their health and social care professionals Information prescriptions Informed and empowered people

What is an Information Prescription? …and you have an ongoing care need… …your care professional will give you this… Well if you have a visit from someone about your care… …so you will know where to get more information, get more help and advice…… …or meet others in the same situation… …so you’ll know all about it and can take charge! …and you’re diagnosed with a condition …your doctor will give you this… Well if you go to your doctor… …so you can find out about your condition, where to get help or meet others with the same thing… ……and find out how to look after yourself…..so you’ll know all about it and can take charge!

Information Prescription content Benefit advice Social care services Management of conditions Support groups Information Prescription content

Example of an Information Prescription

Benefits Patients, carers and social care users Access to the information needed to help people understand and manage their care Given at an appropriate time, throughout the care pathway Increased understanding helps people feel in control and independent Allows everyone access to quality information, by making the delivery of information routine and available to all Supports everyone to receive information through accessible formats, tailored to their needs Help people to access the support they need, not just those who know their way around the system Professionals and services Allows professionals to give people relevant, timely information quickly and easily Increased understanding to help people feel in control and stay independent Supports care planning, choice and self care Improved self care can reduce visits to GPs and hospital admissions, as well the length of stay in hospital Provides a complete package of care for people, centred around people rather than services Provides an integrated tool for health and social care staff, centred around people rather than services

The process for Information Prescriptions Information Content Identify sources of information people people need to access Access Made available through range of channels Prescribing A template in an appropriate format Personalised Process Specific to the condition, place and point on care pathway Directories Establish links to the content Information Prescriptions

Understanding the impacts and benefits Developing the process and national policy Realising behaviour changes Information Prescriptions available nationally for people with long term conditions Development Piloting Evaluating Patients Social Care Users Carers Professionals Organisations Content Directories Template Issuing Accessing Developing Testing Implementing Impact Benefits Effectiveness

Pilot sites Cancer (general): Durham Head, neck, lung and gynaecological cancer: Nottingham Young people’s mental health: South Staffordshire People over 65 mental health: Cambridgeshire Dementia: Isle of Wight Alzheimer’s dementia: Suffolk Neural and physical conditions: North Tyneside Sight loss: Leeds Dementia: Leeds Diabetes: Darlington Adult mental health outreach: South Essex Whole systems approach: Manchester Depression, anxiety: Doncaster Deaf and hard of hearing: Oxford Cystic Fibrosis: Birmingham Non-surgical cancer treatment: Birmingham Psychosis/Schizophrenia, Bi- polar/Manic depression: London Paediatric pharmacy: London Complex cancer care: London Diabetes, Asthma, Arthritis: London

Pilot evaluation findings for patients/users/carers 76% agreed that they were more confident in managing their condition 66% agreed that they felt more in control of what was happening Carer views similar overall to those of patients and service users: some reported improvements to the quality of their own day to-day life 89% of users agreed that the information was useful, including all cancer patients and 91% of those living in more affluent areas but only 76% of those living in disadvantaged communities or who received a light-touch IP. 73% agreed that they were more confident in asking questions

Pilot evaluation findings for professionals 41% of the issuing sample wanted to offer more information (especially in mental health and LAs)… …notably about how the condition progresses, contact details for charities/voluntary and support groups Two thirds said that IPs could help provide better care and it gave them better opportunities to explain how to use information 70% of those issuing agreed that they could continue with this new way of working. Views were less positive in primary care (50%) than in acute settings (80%) Half now spend more time with their patients or service users. Two-thirds think this is mainly worthwhile Notably less positive views in primary care, especially among GPs and practice nurses

Pilot evaluation findings Core IP aspects Aspects Holistic information provision Personalised with professional involvement Partnership working – information providers, health & social care Involvement of service users in design Trustworthy sources – information accreditation Integrated into service delivery Reduce inequalities – strategies for additional support, and different channels IT support for professionals – IP generator Different delivery models in different settings Integrated prescribing/dispensing vs separate Light touch vs fully integrate Dispensing - by professionals, libraries, telephone, face to face support.

Pilot evaluation findings Concerns Lower visibility/impact of light- touch IPs, including for carers Consistently lower level of impact on patients/users who live in disadvantaged areas – more support needed here Concerns in Primary Care, especially GPs Worries over workloads, notably from those with most experience of the IP process Around 30% wanted more training, especially MH and acute sector non-specialist Positive findings Notably in acute settings, such as cancer sites Professionals generally rated IP ahead of previous information Information is normally understood, used and found to be useful Most of those seeing the information thought their health would benefit Some increased user/carer confidence reported

Information included on Information Prescriptions Management of conditions, how it progresses Different treatment options and medication Social care – eg carers support, housing support, housing alterations Local health and social care services Voluntary and community sector organisations Benefits and finance Carers information Employment and training Leisure and other

Implementation National support for local implementation Information quality assurance: information accreditation scheme Information systems: NHS Choices Workforce: NHS Employers Taking forward local Implementation Resource pack

Local implementation: Resource pack Clear guidance on how information prescriptions can be developed efficiently and effectively Compendium of tools, templates and other technical approaches which were developed by pilot sites and apply to other settings Provides a network of practitioners and professionals with an interest in and experience of information prescribing Showcase pilot insight Resource pack includes… Making the case User & Partnership working Staff Engagement and training Agreeing options and priorities Project Planning Agreeing the processes Communications Quality Assurance Monitoring and Evaluation Measuring benefits Risk Management

National support Information accreditation scheme Accredited information producers can feature on information prescriptions Patients and public reassured and able to recognise ‘quality’ both on information prescriptions and elsewhere People who use health and social care services will be able to make informed decisions about their care Health and social care staff better supported to deliver quality information to the people who use their services Raising the bar of quality information producers Information producers’ reputation enhanced Promoting within NHS and social care organisations to secure buy in Support employing organisations, professional & regulatory bodies, education institutions, in addressing education and training/CPD implications Workforce implementatio n

Summary Local implementation can start now, supported by the learning of the piloting programme. Resource Pack: IAS Draft standard: NHS Choices:

Summary We want information prescriptions to become a routine part of care – just like prescriptions for medicines. Together we need to take this forward based on the learning of the piloting programme

The Role of the Eye Care Liaison & Information Officer (ECLIO) Debbie Keogh RNIB Leeds

Information Prescription Resources Intra-clinic pathway to detect likely beneficiaries from Information Prescriptions/CVI Personal Information Form (PIF) Directory of services/CD Free access to a dedicated RNIB Information prescription telephone service Support from an Eye care Liaison & Information Officer

The Eye Care Liaison & Information Officer Front line service for people newly diagnosed with an eye condition Patients who are eligible for registration as Sight Impaired or Severely Sight Impaired People who are struggling with their vision on a daily basis Support for family members/carers

The Eye Care Liaison & Information Officer Objectives Timely Support Initial emotional support Providing Information Using a person centred approach to visual disability Availability Providing a bridge between health and community services

Principles Equal opportunities for all User consultation throughout the stages Confidentiality maintained at all times Support provided by the ECLIO is ongoing as and when required by the service user

Referrals to the ECLIO Eye Clinic Community Eye Clinics Hospital wards (inpatients) Voluntary Organisations Adult Social Care Other Hospital departments Self referrals

Referrals from the ECLIO Adult Social Care – rehabilitation/ OT Education Support Services Employment Services Welfare Rights Travel Concessions Voluntary Organisations (Local & National)

Involvement (Short term) First point of contact Understanding of the eye condition Emotional Support Listening Safety Working together to form a plan of care Signposting

Involvement (long term) Continuous contact as required Information Awaiting services or appointments Reassurance (Check appointment dates) Continuing emotional support

Advocacy Changes to appointments Confer with Consultants Requests for letters of support

The Eye Care Liaison & Information Officer RNIB Model Thank You

Key Challenges The broader picture on information Providing information across the pathway and health and social care Signposting Vs supporting access to information