LEAP, August 2022

Lived Experience Advisory Panel Report for August 2022

About Dementia Jersey’s Lived Experience Advisory Panel (LEAP)

This Panel brings together people with dementia and others with lived experience of supporting or caring for a person with dementia, to discuss issues of significance related to living with a diagnosis of dementia.

The Panel meets monthly, proceeds with an agreed subject for discussion, and because of its advisory purpose, the outcomes of discussions and the recommendations of the Panel are documented and disseminated to inform, as appropriate: government departments, health and community service providers, businesses, other charities and our team at Dementia Jersey.

Subjects for discussion are submitted either by Panel members or from other interested parties via Dementia Jersey’s staff.

LEAP is headed up by our Dementia Advisor Team.

Please contact Dementia Jersey if you would like more information about our LEAP.

Email: info@dementia.je

Call: 723519

Overview of the LEAP meetings held in August 2022

In the light of the government’s commitment to a dementia strategy for Jersey, the LEAP members were asked to share their experiences of services for people with dementia and carers, and to make recommendations for improvements.

A summary of these discussions can be found in the sections below, including Panel members’ experiences and recommendations for change.

A total of 25 people, including people with dementia and carers, attended the three separate LEAP meetings in August, facilitated by Dementia Jersey staff.

All information provided below is anonymised and non-specific gender pronouns have been used.

Outcomes of the LEAP meetings held in August 2022

As this LEAP meeting was primarily focussed on the Panel members’ recommendations for the development of the strategy and areas to be included in it, a brief summary of the subjects discussed is included here with fuller details in the ‘Recommendations’ section below.

The subjects discussed, in the order in which they were raised, included:

Strategy review dates

Inclusion of service users’ voices

Inclusion of all H&CS departments and others providing services for people with dementia and carers

The importance of appropriate training and CPD in dementia and dementia care for all professionals

Availability of Dementia Advisors (or similar titles for this role) for everyone with a diagnosis of dementia and family carers

Care planning

Service design, or the re-design of services for people with dementia and carers

‘Buddy’ scheme/service

Forget-me-not patient identifiers

Sunflower lanyard scheme

Transport and parking

Domiciliary care

Care homes and care home staff

Diagnosis

Information

Public awareness of dementia and risk reduction/brain health information

Support for people in the early stages of dementia

Panel members’ recommendations for The Jersey Dementia Strategy.

1. Strategy review dates: The Panel all agreed that review dates should be set so that the effectiveness of any outcomes and actions could be assessed, and new advances included.
2. Inclusion of service users: Although the Panel did not recommend the strategy should be co-produced, they said that people with dementia and their family carers should be included in all discussions and any decisions made.
3. Inclusion of H&CS and other organisations delivering services for people with dementia and carers: All Panel members agreed that all health departments and organisation offering services for people with dementia and their carers should be asked to contribute, as appropriate, to the strategy’s development, and that this should not be a strategy directed only by civil servants.
4. Health professionals’ training: The Panel strongly agreed that all health professionals should be knowledgeable about dementia. In particular, they said that all nursing and health care assistants should hold a professional qualification in dementia care and have access to CPD training options in dementia care as this field of work is continually evolving. They agreed that all doctors who have, or may see patients with dementia, particularly GPs and other hospital doctors, should also have specialist training and that knowledge and experience should not be presumed because of their professional status and initial general medical training. They emphasised the very specialist nature of this work with some Panel members drawing attention to what they had experienced as better care with more understanding staff at St Saviour’s Hospital compared with care they had received in the community and care homes. They questioned if this may be due to the government requiring higher qualifications and better training for their staff. They wanted the strategy to take note of this aspect of their experience and highlight the need for excellent training.
5. Availability of Dementia Advisors, Care Co-ordinators, Service Navigators: The Panel all agreed that the strategy should draw attention to the need for everyone with a diagnosis of dementia and their families, to have a named person allocated to them to offer assistance, reassurance, advice, and for signposting to other appropriate services. There was some discussion as to what these professionals should be called, but Dementia Advisors, Care Co-ordinations or Service Navigators were all suggested. Those Panel members who had accessed the Dementia Advice service provided by Dementia Jersey all spoke highly of this service and the support they had received from the Advisors. They said that this service should be available to everyone at the point of diagnosis and that Advisors should be available in the hospital too. They therefore requested the strategy gave attention to this.
6. Care planning: All Panel members recommended that people with dementia, and if appropriate, their families, should be involved in the design of their care plans based on the person’s preferences and interests, rather than being limited or directed by what was offered by agencies or services or suggested by social workers or other care co-ordinators and budgets. They wanted to draw the strategy team’s attention to the importance of this.
7. Service design of Health and Community services: The Panel expressed that hope that all those involved with the Dementia Strategy for Jersey and any recommendations made for the design, or redesign of services should be by a team of people with excellent knowledge and experience of working with people with dementia and family carers.
8. ‘Buddy’ scheme/service: Although most Panel members said they felt supported by family, friends and Dementia Jersey, some expressed concern for others who did not have such support. They were especially concerned for people during a stay in hospital, or if people being cared for at home with care agency support, were known not to have friends or a ‘buddy’. The panel were in agreement that any strategy should promote good community care and that this could be a scheme which could be managed quite successfully by each parish.
9. Forget-me-not patient identifiers/patient experience in hospital: Some Panel members were aware of this scheme, having been involved in discussions about this several years ago, but had noticed that this was not used during recent admissions to hospital. They felt that the strategy needed to review people’s experiences when in hospital as many said they had experiences that were not positive. They believed the forget-me-not system would help, to some extent, but only if this was used consistently and understood by all members of staff having any contact with patients.
10. Sunflower lanyard scheme: A discussion about these lanyards followed on from the discussion concerning the in-patient identifiers. Many Panel members said that the sunflower lanyard scheme had been helpful to them but that greater public awareness of this was needed, and they believe the dementia strategy could be used to promote these further.
11. Transport and parking: Most Panel members agreed that transport had become a significant issue for them because of their own diagnosis of dementia or a family member’s diagnosis and wanted to raise this as an issue with the strategy team. They made several recommendations. Firstly, that the blue badge parking scheme should be promoted for people with dementia as for other disabilities; secondly that parking at the hospital should be more accessible; thirdly that the hospital patient transport scheme should be improved and be accessible to everyone who needs it; fourthly that a drop-off zone with a chaperone service on arrival should be available; and fifthly that transport to day care centres and other activities in people’s care plans should be available to everyone, if not by mini-bus pick-up, then by a free taxi service with drivers trained in dementia awareness.
12. Domiciliary care: All the Panel members who had experience of care at home felt the services offered fell short of what they would like, though this was their preference rather than residential care whenever possible. They therefore wanted the strategy to address this. Their first concern was that they could not access the care they needed because the care agencies did not have the staff to provide this. Secondly, they said that the budgets available to them through the Long Term Care Scheme were inadequate to meet their care needs with the costs the agencies charged for the care. Thirdly they said that care was compromised because there was inconsistency in the staff attending the person and that it was extremely difficult for a person with dementia to have care from several different people and it was also difficult for family members to have many different carers spending time in their homes. They also shared the opinion that some staff appeared to be poorly trained and seemed inexperienced in dementia care. The Panel therefore hope that the strategy will bring about a major review of the domiciliary care system in Jersey.
13. Care homes and care home staff: Panel members were in agreement that a major review of the provision and standard of care in care homes was needed and that they hoped the strategy would address this. Firstly, some members said that they had no choice of care home when residential care was needed for their relative and others had to wait some time for a room to become available in any care home. They found this distressing and disappointing. Some Panel members expressed the view that some staff in care homes that were supposed to offer services for people with dementia, appeared to be poorly trained and unable to manage people who were challenging to them. Some had experience of their relatives then being moved to St Saviour’s hospital and not being ‘allowed’ to return to the care home. Others commented that it appeared the best staff seemed to move on, which they thought may be due to better pay being available elsewhere, which they believed to be far too low for the work they do. There was the shared hope that the strategy would address this.
14. Diagnosis: All Panel members were in agreement that this should be a subject for the strategy team to consider as most people’s experience of this was negative. Firstly, some said their GP had not been helpful at all and did not act on the worries family members had raised. Most said that the wait for an appointment at the Memory Assessment Service (MAS) was unacceptably long, and that no interim assistance was offered. In further discussion there were inconsistencies in the diagnostic pathways and the tests done to reach a diagnosis, which troubled members.
15. Post-diagnostic support: The Panel all agreed that there should be immediate post-diagnostic support available to everyone because after being discharged from the MAS most Panel members said they felt unsupported and did not know any procedures for accessing any further assistance or support. They said this needed to be changed and they hoped the strategy would be a means for this change.
16. Information: All Panel members said they needed good, reliable, relevant, and accessible information at all stages of dementia, but their experience had been that this was lacking. They hoped the strategy would highlight the need for this. This would include information available in person from any health professional, via leaflets and online.
17. Public awareness of dementia and risk reduction/brain health information: All Panel members agreed that there needed to be a significant public awareness campaign about dementia generally, and particularly to encourage people to access an earlier diagnosis, given that most treatments for the symptoms of most dementias are most beneficial in the early stages of dementia. They also said that the government should promote a very clear risk reduction/brain health message, as it was now well known that the incidence of dementia could be reduced by up to 40%. The Panel felt that if the government had this information, they had a duty to share it and that the strategy might be the means for this, or the beginning of a more concerted effort to do so. They also discussed the potential cost-effectiveness of doing this and were in agreement that businesses and other public services should be encouraged to be ‘dementia-friendly’ not only for the benefit of people with dementia but also for the economy.
18. Support for people in the early stages of dementia: All Panel members were aware of and grateful for the activities and events offered by Dementia Jersey, and particular gratitude was expressed for The Meeting Place Project for people in the early stages of dementia. Panel members with dementia spoke of the need for more such services because it was only this and the Cognitive Stimulation Therapy group available through MAS that provided such services. While most Panel members also said that there were insufficient domiciliary care and day care centre options for people later in their illnesses, it was this early intervention, offering opportunities for socialising, friendship, support, information, occupation, and exercise that was really missing. They expressed the hope that the strategy would be instrumental for change for people in the early stages of dementia.

Dementia Advisor Team – August 2022