Making links and raising awareness in the health and social care system
“The dementia care pathway for this county, it’s a mythical beast… you go around and it’s just like hunting the Loch Ness monster at times.”– Meeting Centre staff member
“Most of our referrals are coming through NHS professionals who are supporters of, and are aware of, the Meeting Centre and how it operates – it’s not a recognised local NHS pathway, as such.” – Meeting Centre trustee
“Some social workers will speak to you, and they’ll say I discovered the Meeting Centre, and I think, well, that’s been going a long time, why have you just discovered it now?”– Health care professional
Meeting Centres typically do not insist on members having a formal diagnosis of dementia. Nevertheless, members may be accessing health and social care services – whether seeing their GP, visiting a memory clinic, speaking to a dementia advisor or getting support at home.
Such services can refer people to Meeting Centres and can also work with them beyond simply referring, so ensuring there is strong collaboration with professionals in the health and social care pathway is key to sustaining high quality Meeting Centres.
The health and social care system is made up of lots of different people and services from different organisations. This can be bewilderingly complex. Clarity and good communication are needed to ensure people in the system remain aware of Meeting Centres; who is responsible for referring people to them; and how and when to refer.
Health and social care professionals need to know what Meetings Centres aim to do and for whom. If professionals understand what Meeting Centres provide, they may become more aware of how Meeting Centres can benefit their own patients or service users.
Third sector organisations such as regional or national charities can also have a role to play, whether acting as referrers themselves or helping forge links between health and social care services and community support such as Meeting Centres.
Recommendations:
- Create clear, appealing and inclusive promotional material. This needs to include what a Meeting Centre is, who it is for and how it differs from other forms of dementia support. Promote these materials widely to professionals working in the dementia care pathway.
- Ensure someone at the Meeting Centre is responsible for understanding which professionals and services might be best to contact regarding referrals and support.
- Ensure someone has the time to regularly liaise with health and social care services.
- Work with other third sector or community linking services who might help refer people.
Suggestions for health and social care professionals:
- Ensure information on community support like Meeting Centres is kept up to date, and make use of third sector partners that can connect patients or service users to that support.
- Ensure the dementia care pathway is well understood and clearly communicated between colleagues, external partners and patients or service users.
- Share information provided by Meeting Centres widely with people living with dementia in the community, and those that support them, and ensure the Meeting Centre offer and how it differs from other forms of dementia support is clearly understood and articulated to people.
Diagnosis issues
“To get somebody to the GP practice in the first place is really, really important because if it doesn’t do anything else, you open support networks.” – Meeting Centre trustee
“The diagnosis stats are dreadful all over the country, and the more rural you are, generally the worse it is… it seems ridiculous to be reliant on a formal diagnosis from a system that is failing, when you’ve got people there who want to be members, and need the support.” – Meeting Centre trustee
Dementia is underdiagnosed by clinicians and underreported by people and families, especially in the earlier stages.
People may not want to seek a diagnosis or find it difficult getting diagnosed. This may be due to stigma, denial or worries about practical repercussions, or difficulties accessing health services.
Whatever the reason, if people don’t seek a diagnosis, they are much less likely to hear about, or want to attend, a Meeting Centre.
Recommendations:
- Work in your communities to challenge stigma, promote dementia awareness, the benefits of an early diagnosis and support available.
- Offer to help people engage with health services and get a diagnosis where appropriate.
Suggestions for health and social care professionals:
- Continue to work to overcome barriers to diagnosis, including raising awareness of dementia, the benefits of an early diagnosis and support available.
- Continue to work to reach people who are more isolated.
Alternative support beyond Meeting Centres
“We’ve been dire, actually, at letting go of people when they’ve passed through mild to moderate and reached advanced stages. We haven’t let go of people because we know that there’s nowhere else for them to get that support.” – Lead of Meeting Centre-running organisation.
“That’s the problem, that means all these people are holding onto their places, there’s no room for new people to come who have got the recent diagnosis.” – Health care professional
Meeting Centres are for people with mild to moderate dementia. As a person’s dementia progresses a Meeting Centre may not be able to meet their needs any longer, so they will need support from another part of the care pathway.
If more appropriate forms of support are not available, accessible or do not appeal, people might feel reluctant to stop attending the Meeting Centre. Staff might feel like they are unable to suggest the Meeting Centre is no longer appropriate for them if they do not have any alternative form of support, meaning more people with more advanced dementia will end up staying on at the Meeting Centre.
Recommendations:
- Ensure professionals know what a Meeting Centre can and can’t offer, when it can meet people’s needs and when they will need other forms of support.
- Liaise with professionals in the care pathway regarding what is available for members who need to access a different form of support, what their needs are and when there is a gap.
Suggestions for health and social care professionals:
- Ensure there is adequate support available for those whose needs can no longer be met by a Meeting Centre – and that everyone knows about it and how to access it.
See also Reaching People and Membership and External Relationships and Collaboration
Get Real with Meeting Centres and the SCI-Dem project 