The project aims to give patients with dementia and their carers access to the information they want and need via a variety of media, including a local Dementia information website, to inform, empower and improve lives. The approach will follow the successful model previously developed in relation to stroke patients in Berkshire West, which involves working closely with service providers, users and carers.  The resulting Stroke website has been in existence for over a year with positive feedback and visitor volumes and can be viewed at  Berkshire Stroke Services | NHS Berkshire

It is envisaged that further developments to encompass other Long Term Conditions (LTCs) in the future will enable a comprehensive local LTC information website.  This project would enable the development of a dementia component of the website. It would include the creation of video clips of interviews with patients/carers about their experience of living with dementia and of the services available and interviews with health/social care professionals about their experience of supporting people with dementia.  As well as being available to people accessing the website, these video clips would be available to incorporate into the proposed training/ awareness sessions (see project Collaborative Training, Domiciliary Training and Berkshire Blue Book) providing a powerful message of professionals working in partnership with patients/carers.

This project will cover all localities across Berkshire West and involves:

• undertaking  a review, through personal face to face / telephone consultation with patients and carers, of information needs and issues across the whole patient pathway for dementia
• working  with key staff from primary, secondary and the voluntary sector to identify the information that currently exists for dementia and where the gaps are, and identify how improvements can be made
• developing  a comprehensive range of accessible information materials to:
  • facilitate patient/carer understanding of their condition and treatment
    signpost to other services they may need, including voluntary services, support groups information on benefits, providers of tools and equipment: to make life easier at home, etc
  • increase patient /carer understanding of the roles of the different professionals and voluntary sector to assist them in identifying where and how to request help
  • contribute to improved patient and carer outcomes, well-being and support systems
  • provide support and understanding for a healthy lifestyle
  • be appropriate for patients with various levels of ability, different languages, disabilities
  • meet established criteria and best practice guidelines for quality information material

The website could also include information for patients and carers about how local commissioners and their partners are implementing the National Dementia Strategy.

It is envisaged that this local dementia website could be used to provide the local component of ‘ourhealth’, which is being rolled out across SoE, and the local component of Information Prescriptions, thus fitting with national information strategy.

Deliverables

Phase 1 – project establishment

• Establish contact with the stakeholder groups to engage their support,  information, and knowledge.

Phase 2 – mapping, data collection, analysis and recommendations

• Extensive data collection exercise to include NHS and Adult Social Care organisations, 3rd sector organisations. We will review existing information materials as well as identify needs and opportunities at every stage of the patient pathway for dementia.
• Targeted initiatives for hard to reach groups and for BME groups.
• Meet with Patient representative and expert patient/carer groups.
• Liaise with and gather information for discussions with the NHS Communication Teams and PPI teams. We will be seeking to work as effectively as possible with a wide range of groups gathering as much information as possible.
• Initial meeting with the design and production services teams at NHS Creative (with whom we have strong existing links) to brief them about the project and discuss options/costs.
• Evaluate the strengths and weaknesses of existing information materials against agreed criteria.
• Develop recommendations for future information provision and a first draft action plan (covering areas such as paper based information, web and/or social media, DVDs, videos,  media relations, awareness events).

Phase 3 – Validation and feedback from sample group

• Validate recommendations and action plan with a sample group of patients, carers, families, user groups, 3^rd sector organisations, and providers for dementia.
• Present interim report to the Long Term Conditions Board.
• Review and revise recommendations.
• Confirm final recommendations and action plan with the Long Term Conditions Board and submit them via the LTC Commissioning Manager for final sign-off.

Phase 4 – implementation

• Organise supplies of currently available materials as agreed.
• Working with NHS Creative ( or other suppliers as agreed) redesign the current Stoke web site to more appropriately accommodate the additional  Dementia information.
• Develop agreed new information materials for Dementia.
• Create video clips (includes  identifying appropriate people to interview, explanations, consent etc, undertaking interview, editing, integrate onto website)
• Ensure local CCGs, providers and patient groups are aware of the information.
• Publicity as required via TV, radio and other social and media networks.

Anticipated outcomes

This project seeks to deliver on one of the key requirements of the National Dementia Strategy; specifically making improvements to the information about dementia services and so ensure the provision of high quality information for those with diagnosed dementia and their carers.

• Better understanding of their condition and treatment
• Improved access to extensive information about the services and support available locally
• Empowerment to make choices and manage their own condition, health and lifestyle
• Better understanding of the roles of different professionals and the voluntary sector
• Support and understanding for a healthy lifestyle

The project also seeks to reinforce working in partnership with patients/carers, reflected in the methodology of the project and continued by the use of materials (video clips) in training/awareness programmes.