The document summarizes a presentation by the Derby Local Involvement Network (LINk) about a Dementia Pathfinder project. The project aims to test how local Healthwatch organizations can influence commissioning across dementia patient care pathways and present compelling findings to decision makers. It discusses the framework used, research findings on information provision, formal and informal care for dementia patients, funding challenges, and lessons learned from developing partnerships and communication frameworks. It notes the pathfinder report will be presented on June 15th and findings will be shared with local Healthwatch organizations.
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Dementia board 21 june 12 pathfinder presentation
1. Derby Local Involvement
Network (LINk)
Southern Derbyshire Dementia Board
Presentation 21 June 2012
Jim Moore Jessica Davies
LINk Co-ordinator LINk Researcher
4. Dementia Pathfinder
• finding an innovative approach and to test
how effective local Healthwatch can be in
influencing commissioning across a whole
patient pathway to shape service delivery
and how it can then present findings in a
compelling manner to multi-agency
decision makers.
5. Dementia Pathfinder
1. The framework – Pathfinder
• A defined cohort of younger older people(50-65)
• Working approaches to engagement
• Learning for Healthwatch
2. Research Findings
• Analysis and assessment of
• Conclusions
Recommendations
6. Dementia Pathfinder
The Challenges
• Timeline
• Budget
• Cuts to finance
• Staff Cuts
• Understanding
• Blockages
• Lack of involvement
7. Dementia Pathfinder
Findings
• Information
3. For people affected by dementia and their
families
4. For people providing informal care
5. For the wider society
6. Methods of communication
8. Dementia Pathfinder
Findings
• Formal Care
• Preventative care
• Experience of diagnosis
• Sheltered accommodation
• Care at home
• Residential and nursing care
• Reminiscence
• Representation
• Dignity and respect
9. Dementia Pathfinder
Findings
• Informal Care
3. Support for carers
4. Support for community groups and
organisations
10. Dementia Pathfinder
Findings
• Funding
3. Medication
4. Care at home
5. Research
6. Services
11. Learning
• Capacity
• Framework development
• Partnership and sharing
• Clear communication
• HWBB (influence)
• Adaptable
Hello ( I am and this is) and we would like to thank you for allowing us your time this morning We are going to give you a brief presentation about the Healthwatch Dementia Pathfinder project that Derby Link has been undertaking as part of its transition process to Healthwatch. We will try and keep it brief and hopefully you will have a clear understanding of why we have done this piece of work and what we are going to do with it now - I know that some of you will have questions but if you could make a note of them as we go through and ask them at the end we will be happy to answer what we can at that point and it will stop me waffling
LINks came into being after the publication of the Local Government and Public Involvement in Health Act 2007 and the relevant section is part 14 Each of the 152 local authorities had to ensure that a Local Involvement Network was established to ENABLE LOCAL PEOPLE TO GET INVOLVED IN HOW CARE SERVICES WERE BEING COMMISSIONED AND PROVIDED IN THEIR AREA THROUGH MONITORING AND SCRUTINISING EXISTING CARE SERVICES OBTAINING THE VIEWS OF PEOPLE ABOUT THEIR NEEDS FOR, AND THEIR EXPERIENCES OF, LOCAL CARE SERVICES; AND MAKE KNOWN THE VIEWS THROUGH REPORTS AND RECOMMENDATIONS ABOUT HOW LOCAL CARE SERVICES COULD OR OUGHT TO BE IMPROVED
The White Paper Equity and excellence Liberating the NHS was the new Governments paper on modifying the NHS and within it discussed that Local Involvement Networks were to evolve into local HealthWatch. Healthwatch would have a wider remit to include all Health and Care services and would also be involved with wider engagement , commissioning of services – help people through complaints procedures and sign posting it would be an independent peoples champion for all health and social care services. An organisation called Healthwatch England will be set up and would have some Statutory functions – BUT Local Healthwatches would report into this body as well as local authority – Overview and Scrutiny panels etc and they would get the CARE QUALITY COMMISSION to act where required – the CQC would also evolve to take on more responsibility. As part of this transition process the 152 LINks were asked to apply to become Pathfinders to find a way of how to make the transition and to test ways of working. Derby Link was one of 75 that were chosen as a Pathfinder and two pieces of work ensued the first was around what type of Structure should a HW organisation in Derby have and the second was about looking at an effective engagement process which would lead to a workable outcome.
The Dementia Pathfinder was the second piece of work in this process and why we are here today. There was no hard and fast rule of how or what each pathfinder should do to engage. Some Pathfinders decided a to focus just on methods and methodologies because there was no over riding reason to choose a specific area to test as it was about finding a way to do something and sharing ideas and the learning. However in Derby The Management Committee decided that it wanted to see if the it could actually achieve an outcome and test how it could feed its findings into what would be the Health and Well being boards- so it chose to focus on mental health and in general and dementia services in particular, It hired a team of consultants OLEANA to help it with this process
The predicted outcomes for the Pathfinder were: Framework for proactive engagement with client/ patient groups- transferable to their health issues a cohort of ‘younger older people’ 50-65 not currently involved with dementia services who could be asked about their ideas and expectations of the services in the future if they were ever to need them. The idea being that this cohort, from two pilot areas highlighted as areas of need through the city’s dementia strategy, could be revisited over an extended period of time to test out their responses to services and service changes Analysis of what approaches work with ‘hard to reach’ communities Recommendations on how the learning can be implemented across Local HealthWatch in Derby City Research Findings:- Analysis and assessment of feedback from individuals and groups in the two pilot areas Conclusions and specific recommendations on this project It was accepted that this was a very different approach which would require close working with partners across the Sectors, but agreed it was the challenge to work differently in consulting local people about the future shape of services.
However the Dementia Pathfinder did not strictly go to plan – the new Health bill did not proceed through parliament as quickly as it was first planned only gaining Royal Assent in March 2012. A reduction in funding led to a reduction in staff and therefore capacity This meant we struggled to communicate the purpose of the Pathfinder to all our partners and to the wider community and this understanding led to blockages and a lack of buy in from those that could have assisted us and reduced levels of buy in and enabled us to fully achieve our objectives even with reduced resource. Example because we did not fully explain that it was the attempt to find a way of improving engagement with the wider community for healthwatch which would allow us to ask that cohort of individuals about a range of services on an ongoing basis we alienated certain organisations who believed that we had not involved them in the process sooner or that we were setting ourselves up as competitors in an area they were the specialists in we had not fully communicated our intentions clearly. However we did move forward with a changed format the biggest being instead of creating a cohort of individuals that were not already involved in accessing dementia services we changed our focus to asking people who were affected by or already had an interest in dementia services which jess will now discuss
A total of eighteen participants took part in the research. Twelve participants with an interest in dementia were engaged via The Over 50 Forum, The Minority Communities Diversity Forum and by word of mouth. These participants had varying levels of experience with people affected by dementia, from an awareness of the condition and its services to both formally and informally caring for a person affected by dementia. Six participants were engaged via a focus group held at The Mickleover Dementia Café, delivered by Making Space. These participants each had experience of providing informal care for a person affected by dementia. What was made apparent during this research, is that the findings support those found at a national level. The main themes that the participants discussed were around the availability of information, the experience of, and attitude to formal care, the experience of, and attitude to informal care and the attitude to the funding of services. In terms of information, participants discussed the importance of awareness and understanding. For people affected by dementia and their families this meant having a clear process to follow and being able to access services from statutory, voluntary and independent agencies. For people providing informal care, this meant being provided with practical information and support to help assist with caring for a person affected by dementia. Participants also felt that information needed to be made available to the wider society to alleviate fear and contribute to developing communities which support people affected by dementia. Underpinning all of these were how this information is communicated, participants discussed the importance of communicating information effectively, through a more personal, targeted approach.
In terms of formal care, participants discussed how they felt there needed to be a better provision in many areas. In general, participants felt that there needed to be more encouragement to stay active in later years and better support in sheltered accommodation to tackle isolation. For people who had experienced formal care, this meant earlier diagnosis and effective signposting were paramount, as well as support for carers, providing support in the home, with the appropriate personal qualities and a continuity of carers who are given enough time to complete tasks. Participants discussed how good practice needed to be standardised in all residential and nursing homes, specifically around resident and relative involvement in decision making, support for staff to carry out their work and dementia awareness training. Participants also discussed how reminiscence should be made available to all people affected by dementia, and that dementia services should be represented in the city. And underpinning all of these were how the participants discussed the importance of dignity and respect in care.
In terms of informal care, participants discussed how they feel there needed to be more support for carers in terms of training and advice, a frequent respite service, counselling, and being encouraged to self care. Participants also discussed how they feel there needed to be more support for voluntary and community groups as a result of a reduction in public expenditure and the reorganisation of many public sector services throughout the country, and the perceived increase in demand which will fall to the local voluntary and community sector.
Participants also discussed how funding needed to be invested in medication, staying at home, research and consultation and services provided in the city.
Whilst we had to change how we have done things we have learned quite a bit from the process – Capacity- HealthWatch will not have the resources to do everything itself, as has been seen with the Pathfinder so far. It will only be effective if it can operate as a network within networks, with lay members vital to its success. Continual development and testing of engagement frameworks Always looking at ways of better engaging people and communities in a fully inclusive manner, and effectively monitoring what does and does not work. HealthWatch will also need to work with local Voluntary and statutory Partners and community networks if it is to give voice and influence to local people in health and social care issues It will have an influential place at the Health and Wellbeing Board. It must therefore continually develop new and robust approach to working with partner organisations to ensure that a credible view is put forward and that there is no duplication of effort or resource. Good communication is key and ensuring that we have the buy in of those with the expertise and know how in each specific area is key we are there to champion for improvements in Health and Social Care so we need that insight and they need to use us to inform the ongoing commissioning and improvement process We now have some clear lines of communication with a seat on the Health and Well Being Board which means we do have a outline of structure of what to do locally. We are working with the new Clinical Commissioning Groups and they are involved in the process of setting up the new LHW We are in an ever changing environment where peoples needs and expectations are constantly changing and we have to be adaptable to be able to gather their views and to help make changes to how things are done
Oleana will bring the final report about the pathfinder process to the next meeting of the Pathfinder steering group June 15 th Those findings will inform how Healthwatch Derby engages or works towards engaging in future. The findings and recommendations from the Dementia research along with those from the Alzheimers Society reports will be presented at a Health and Well Being Board date to be confirmed but July onwards these will help influence the future commissioning decisions for the City. Healthwatch Derby will come into existence from September in some form – Healthwatch England will be running from October – and Healthwatch Derby will be operational from April 2013
