This is a piece published this month in The Journal of Dementia Care. I was invited to write to the new CEO, Kate Lee, back in December, about what her top priorities should be.
I did not dream that the present situation was about to happen!
“Kate Lee takes over from Jeremy Hughes as Alzheimer’s Society CEO in April. What should be top of her “to do” list?”
Welcome, Kate, to this crucially important role in developing meaningful support for people living with and affected by dementia.
What are the big things we need you to do?
First, with your strong campaigning team, hammer on the doors of government to get us fairness. Not to be heard, but to get action. Government have heard us for years but have not acted. So hammer and shout.
Persuade the government to end the postcode lottery of care and support that depends on CCGs’ whims and preferences. They should introduce a standard with legal force for everyone affected by dementia in England. The same goes for Wales, Scotland and N Ireland, of course.
This may require repeal of the Health and Social Care Act (Lansley), in which case…sobeit. Do it.
Second, ensure that if Dementia Connect is to become the standard support service across the country (as referred to in the NHS Ten Year Plan), ensure that advisers are all fully trained up to have the skills and knowledge they need to do their work well. The advisers should fit between Admiral Nurses and Dementia Support Workers, and must have the skills for that demanding and essential role. Also ensure that their managers have the skills, experience and time to manage the Dementia Connect services well. Otherwise they will not meet the needs of us, people affected by dementia.
Third, change the culture of Alzheimers Society, which at the moment comes across as ‘our way or no way’. Allow local people to run groups as they want to, not as you think they should, nor as a national standard model. Alzheimers Society’s role should be as facilitator of local support groups, not controller.
And please don’t allow your organisation to lift and copy others’ good ideas, without acknowledgement, and sometimes in ways that confuse us. (Think about the yellow I want to speak cards? Think about the use of ‘Dementia Voice’. Taken from others.)
Fourth, sort out the National Dementia Action Alliance, and the Dementia Friendly Hospital Charter. Chronically underfunded and understaffed, these need proper resourcing. The Hospital Charter is not monitored, and is too often a tick box certificate by NHS Trusts to get us off their backs. There is no check that the hospitals have done anything worthwhile.
Fifth, and I shouldn’t need to say this…value your people. There’s been too much reorganisation, slimming down, expecting too much of staff. This is neither good for them nor for us, the people they should be helping.
Sixth, and last, but possibly the most important and potentially productive, please work with other organisations, not against them. Many dementia organisations have different priorities, so work together to achieve more for us. Help each other. Talk to each other. Share your strategies. Work together to create the post diagnostic support and carer support that we all need from time to time.
As you of course know, Together Everyone Achieves More.
And good luck!