When Shoko’s Alzheimer's seemed overwhelming, we were looking around to build up information and try out some of the bewildering range of support options. It took a lot of time and effort and it seemed that we had to find our own uncertain way.
Then we were introduced to Phil Parker, the community dementia nurse, who led the Merton Dementia and End-of-Life care team in a new project.
· Phil was the answer to our search. He could give us a high level of medical and social care. He also gave advice about carers, live-in care, incontinence and many other practical and personal issues. He could link us to other services, organising extra stair rails through the occupational therapy team, or arranging a visit from the continence service.
· Along with this he offered relational care. He was personal, interested in Shoko, talking to her directly and singing with her, as well as listening to my questions.
· He was accessible. An email or phone call would always get a reply and often a visit at home.
The team that Phil headed with his two colleagues was a new project run by the Central London Community Healthcare NHS Trust (www.clch.nhs.uk). It was based within Merton Community Services – provided by the NHS and co-located with Merton Council. It was an attempt to bring together medical and social care to meet the needs of the approximately 2,000 people living in Merton who were thought to have a diagnosis of dementia. It was brilliant. But it was struggling all the time to avoid having its budget cut, when it needed to be expanded at least ten times to meet the need.
Another example of a team that works is ‘My Care, My Way’, pioneered by the West London Clinical Commissioning Group (www.mycaremyway.co.uk/). They have set up integrated teams to support the health and well-being of local people aged sixty-five and over. The teams bring together professionals from health, social care and voluntary organisations to work with ‘patients’ and their carers (where relevant), in order to help keep them well and plan together for any needs. Patients and carers have a single point of contact and individualised care. The teams have built solid relationships of trust with them. It is a model of long-term care, not just ‘disease management’.
Admiral Nurses are another example, providing support exactly at the point of need. Their scope also needs to be expanded across the country.
This kind of team is surely the future of care for the elderly, not just for those with dementia, but especially for them.
How can teams like this be strengthened and expanded? And how can staff working in this field have the recognition and reward they deserve?
We received a lot of support, so we were not alone. But there were times when it did feel very lonely. In similar situations, people constantly ask themselves: ‘What will happen in the future and how long it will all go on?’ Having a single point of contact and care to pull their care together will enable them to live with enhanced quality of life and avoid the huge costs of hospital or care home.
This is ‘sustainable people-centred long-term care’ (Dr Hans Kluge, WHO Regional Director for Europe, 23 April 2020). It brings together the health and social care professionals along with those needing care, and their caregivers, to make decisions and provide the needed care.
Can the system change to enable this? Read more in ‘Changing the system and building your support team’ here.