Today I am posting a letter I have sent to our three Shropshire MPs, about 20 county councillors, and most of the board if Shropshire CCG.
It’s Dementia Action Week, and we all need to campaign for change.
To Members of Parliament for Shropshire
21st May 2018
Support and care for people affected by dementia in Shropshire
Dementia is the name for a group of symptoms resulting from organic brain disease. It is not a mental health illness. It is a disease. There is no cure or treatment, but several drugs can enable the brain to function more effectively and slow the decline in cognitive capacity.
Some 3,700 people living in Shropshire live with dementia. Over 2,000 live in their own homes.
67% have a diagnosis.
Around 3,500 family members provide support and day to day care for their family members living with dementia.
What support and care is provided after diagnosis?
For the younger and fitter people, there is almost none. And what there is is broadly not what people living with dementia want or choose. It is what organisations think should be provided, such as dementia cafes with organised group activities. No more than 300 people living with dementia and carers attend these “cafes”each year.
People in Shropshire have a co-produced dementia strategy and model of care, agreed two years ago. But Shropshire CCG is not funding its implementation across the county.
After diagnosis, people living with dementia are left in a wilderness of fear, bereavement and loneliness. Until they reach later stages, perhaps up to ten or more years later, there is little or no support. And what people living with dementia say they want is mostly to be able to go on living as they choose, and to meet and talk to others in their position. However, many withdraw from social contact for fear of getting lost, forgetting why they went somewhere, or being unable to carry on a fluent conversation with someone who doesn’t know them.
Peer support groups, led by and attended by people living with dementia, and others for carers, are key to wellbeing and therefore health. But these groups need a small resource to initiate them and keep them going. This is not available, so there are just three such groups for people living with dementia in Shrewsbury, Oswestry and Market Drayton, and none elsewhere, run by volunteers without any funding or support.
Shropshire CCG does not commission an Admiral Nurse Service, nor sufficient Dementia Support Workers, to provide a consistent level of support for people living with dementia and their family carers across the county. Yet Telford and Wrekin does both of these things.
Admiral Nurses are key workers in relieving the crises families living with dementia face from time to time. They are clinical experts and spread their expertise throughout the health and care networks they work in. They support families through a crisis by providing a single source of support, and they find solutions on behalf of the families when they cannot navigate the disconnected sources of support available. They get over the barriers which others cannot navigate.
There is strong evidence that an Admiral Nurse Service is hugely valued and respected by users, and that it is highly cost effective, saving up to three times their cost in reduced admissions, social care, gp attendances, and related benefit costs. Not to mention reducing the terrible levels of distress that families go through when trying to care for a person living with dementia during a crisis. Across England there are over fifty Admiral Nurse services. Whether you can access these depends entirely on where you live: a post code lottery.
The Shropshire Dementia Strategy includes the employment of Dementia Companions (navigators) to support people immediately after diagnosis through to end of life, with support and contact provided as and when needed. These Companions would provide the needed support to carry on living as we choose, to continue to be engaged in our communities and the activities we enjoy. Like everyone else. Without this support many people living with dementia lose confidence, become frightened of going out, and withdraw. Their wellbeing is severely impacted.
And yet Shropshire CCG is refusing to fund these posts across the county. They are funding two small pilots in Oswestry and Ludlow, but with no commitment beyond 2018-19.
People living with dementia in the early to middle stages continue to live in their homes, and want to continue to be engaged in their communities. Without relatively inexpensive support they withdraw, become frightened of leaving home, and lose confidence. They then visit their GP more frequently, are admitted to hospital more frequently, and remain in hospital longer. They also are much more likely to be moved to care homes earlier than otherwise would be needed. They therefore cost the state a lot more money, and I’m talking tens of thousands of pounds, than if they received support to live in their community.
This is Dementia Action Week. I urge you to speak to Shropshire CCG and Shropshire Council and to tell them that they should be funding this support. If they say they have no funds, you can tell them that by spending on the support and services I have outlined they will save several times that cost in other services.
I would like to refer you to the five Dementia Rights Statements issued late last year, and a significant element in the Dementia 2020 challenge.
People living with and affected by Dementia have lawful rights under several national and international laws to appropriate health care in order to continue to live their lives as they choose. This is not optional. It is a human right.
You are a member of parliament representing people in Shropshire, and I urge you to put pressure on those entrusted with providing our health care (and paid by us to do so) to provide the funding necessary to support people living with and affected by dementia in Shropshire.
Chair of Shropshire Telford and Wrekin Dementia Action Alliance
Member of the Three Nations Dementia Working Group
Facilitator of two DEEP peer groups
Living with early onset dementia