The outstanding quality of Liverpool Memory Service is in service user and carer involvement. Instead of this being tokenistic the service leads the way and thrives on engagement of service users wherever possible, always reflected in the comments of MSNAP reviewers and recently CQC.
Liverpool Memory Service (South and Central – Mossley Hill Hospital) has been accredited as excellent over 3 cycles of the Memory Services National Accreditation Programme . The outstanding quality of the service is in service user and carer involvement. Instead of this being tokenistic the service leads the way and thrives on engagement of service users wherever possible, always reflected in the comments of MSNAP reviewers and recently CQC. The biggest advocates for the service are those that use it .
Many services have service users on interview panels but the service at Mossley Hill has involved service users in the following ways : - Attending post diagnostic support final session to encourage people at the point of diagnosis to get involved and instill sense of hope after diagnosis; Peer support and mentoring of people who are newly diagnosed and carers ; Innovation – co-creation of apps and technology and testing of products for people with dementia ; presenting at conferences about the experiences of living with dementia ; membership of SURF Liverpool (service user reference forum) who are a group of dementia activists who are lobbying local services and are an expert reference group for statutory and non-statutory services regarding dementia.
Their work includes introducing helpcards, making films for businesses, tv appearances, lobbying transport providers , working with Liverpool Dementia Action Alliance to make Liverpool a dementia friendly city, – design champions – people with dementia working with estates department to ensure new buildings include dementia friendly design - teaching medical students , trainee clinical psychologists, school children etc - participating in dementia awareness events to increase awareness and challenge stigma involvement in research and innovation – current research projects include – Human Rights and Dementia, Cygnus and Help at Home and innovation – Innovate Dementia , On our Radar ! - supported to attend national speaking events for Alzheimer’s Society , DEEP etc – involvement in national projects- Dementia Engagement and Empowerment Project, national campaigns - involvement in film projects , music recordings, collaborations with arts organisations ( see below)
This work contributes enormously to reducing stigma, the profile of the service is very high within Liverpool and it is gaining national recognition as it leads the way in user innovation and engagement . This contributes to high levels of wellbeing of people who are living with dementia, carers and the staff team.
The memory service has been integral to the setting up of the award winning – SURF Liverpool , this group of people with dementia and carers is supported by a collaboration between Liverpool Clinical Commissioning Group, Liverpool City Council,Mersey Care and the Alzheimer’s Society to ensure changes in the city in health and social care can be implemented. The group is chaired by people living with dementia involved in public speaking , lobbying and members sit on various working groups within health and social care and through the work of the dementia action alliance.
– Innovate Dementia involved a collaboration with people with dementia and carers. health and social care providers, small businesses, universities and partners in North West Europe who came together for a 3 year project of user led innovation and co-creation.The project was a vanguard demonstrating high levels of user involvement and stakeholder engagement with over 50 people with dementia and carers taking part over the life of the project.
– Research and Innovation – currently Mersey Care is running a National Institute of Health Research bid looking at human rights and dementia with Liverpool University and people with dementia on the project steering committee, influencing the direction of the project and representing the views of people with dementia and carers.
– People with dementia and carers involved in testing technologies and co creation and are currently collaborating with 3 small /medium enterprises.
– Mersey Care Liverpool Memory Service is also part of Liverpool Dementia Action Alliance with people with dementia working with transport providers , businesses and architects and 30 other organisations through the work of the DAA. The alliance has relied on Mersey Care’s support to enable people with dementia to be involved will all the events that are hosted in the city and supported at events by the staff team.
-Dementia and the arts.Mersey Care Memory Service and SURF are working with the Everyman Theatre in Liverpool to support people with dementia to write and perform in a play to be staged at the theatre. they have also collaborated with FACT , the Open Eye Gallery and IronLung film makers
The above represents collaborations which are over and above the standard services that the Memory Service collaborates with for business as usual – other health providers, social care and the voluntary sector.
The basis of this application is high level involvement of service users and carers. Every time the service is audited, reviewed, accredited and visited by CQC people with dementia and carers and service users with other conditions are invited to talk to the reviewing team. This led to a recent ‘outstanding ‘ award in care by CQC. Service user feedback is obtained by the organisation on a monthly basis via questionnaire. However there are also other avenues for regular service feedback . The team run a monthly peer support group and support the monthly SURF group and at both venues people are encouraged to give feedback. SURF often invites service managers to meetings to discuss matters that arise. The team have open relationships with service users which leads to great relationships and regular feedback.
Staff feedback is obtained through regular staff meetings, supervision and staff have an opportunity to complete questionnaires yearly and through the memory service accreditation programme.
Initially, involving people with dementia in service development came from setting up and running post diagnostic support groups and this was an unexpected outcome. The team found people did not want to leave and wanted to stay connected and involved. Gradually as opportunities have arisen and the service has become more well known as a beacon in terms of involvement and engagement more and more opportunities are now arising of ways to involve people meaningfully in a way which meets their individual needs.
Early on we identified there was a need to be careful . Involving people with dementia is not without its challenges and the service developed a policy to ensure people’s needs and wishes are respected and that issues are handled sensitively and in a person centred way as they arise. There is a need to be particularly sensitive as people’s abilities change. Dementia throws up many ethical challenges which is why it is essential there are skilled practitioners overseeing the many and varied opportunities for involvement .
Though there would be no changes to how the service has developed there is a lot of learning which will be detailed below which is now integrated into the way the service is run.
Initially due to lack of awareness there was some degree of skepticism regarding how people with dementia could be involved due to the fact that they had dementia. This has changed dramatically as people have seen how well people have been involved and the difference that their involvement makes.
One challenge that would never have been predicted was the issue of ‘dementia celebrity’. Some of the service users have become well known nationally because of their ability to speak publically and be advocates for their peers. This has led to a lot of demands being made on certain people. The individuals involved enjoy this but the team are mindful of the demands made on certain individuals. This has been overcome by having a central e mail address for all requests for involvement, speakers etc to attempt to share out the requests.
Another unforeseen consequence has been through the innovation project. As businesses have come into contact with some people with dementia they have attempted to contact people outside of the project to collaborate. Whilst this is up to each individual it led to the team encouraging people to deal with businesses through the project as that was the only way the team could ensure governance.
Another challenge has been how to address the issue of people’s changing needs over time. As stated the team have written a protocol so there is a procedure to follow when people’s needs are changing to ensure it is handled sensitively and they are offered alternative ways of remaining involved in a way that remains meaningful to them.
Though this work began on a small scale through post diagnostic support it has now become embedded in the service and is an integral part of how the service runs. Work started through a few individuals but as it has increased more staff members are becoming involved and it has become the norm for the service. As subsequent accreditation and inspections have applauded the level of involvement there remains a strong commitment amongst the memory service team to continue the work using this approach . The infrastructure of groups like SURF have developed and they now have a constitution and management committee so it is not dependent on one person.
MSNAP accreditation 2015 ( award of excellence no longer available as MSNAP no longer give it ,2013 (excellent),2011(excellent),2009 (excellent) CQC inspection June 2015 nominated for awards
Conference presentations, journal articles, social media, teaching MSc students , psychology trainees, medical students Sharing the involvement protocol SURF is award winning and have a national presence, work with DEEP to share good practice
The benefits of involvement for people with dementia are really important. Many people feel devalued and not the person they were when they are given a diagnosis of dementia. Involving people in all of the above ways gives people a role and they feel like a valuable person again , one person said it has literally saved his life as it gives him a reason to get up in the morning. It has led to increased levels of wellbeing for people with dementia and therefore better outcomes.
It is challenging work for the staff and difficult at times. it has raised many challenges that would not have been foreseen yet it is immensely satisfying and it makes a huge contribution to changing hearts and minds and challenging stigma. It would be a great honour to have this highly significant work recognised through this award.
