Mick Ward Head of Strategic Partnerships and Development

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

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

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 . . . tailored to help people with long term conditions and carers receive information they need to manage the condition. …include helpful and relevant information, for example about conditions and treatments, care services, benefits, and support groups. Information prescriptions 61% thought that being given more information about their health conditions would make a big difference …signposts to sources of information about health and care – eg Tel nos, website addresses. …will be given to people by their health and social care professionals Informed and empowered people

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

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

Example of an Information Prescription

Benefits 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 Patients, carers and social care users • Access to the information needed to help people understand 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

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

Development Evaluating Piloting Developing Testing Implementing Content Directories Template Issuing Accessing Patients Social Care Users Carers Professionals Organisations Impact Benefits Effectiveness Understanding the impacts and benefits Developing the process and national policy Realising behaviour changes 2007 Information Prescriptions available nationally for people with long term conditions 2008

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

Pilot evaluation findings for patients/users/carers 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. 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 73% agreed that they were more confident in asking questions service users: some reported improvements to the quality of their own day to-day life

Pilot evaluation findings for professionals 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 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

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

Pilot evaluation findings 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 Concerns • Lower visibility/impact of lighttouch 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

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

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

Local implementation: Resource pack Provides a network of practitioners and professionals with an interest in and experience of information prescribing 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 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 www. informationprescription. info/resource

National support Information accreditation scheme www. nhs. uk • 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 Workforce implementatio n Support employing organisations, professional & regulatory bodies, education institutions, in addressing education and training/CPD implications

Summary • Local implementation can start now, supported by the learning of the piloting programme. • Resource Pack: www. informationprescription. info/resource • IAS Draft standard: www. dh. gov. uk/accreditation • NHS Choices: www. nhs. uk

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