Stormont's Health Minister has been urged to make reducing the time it takes to get a dementia diagnosis in Northern Ireland a priority.
That was the message to Mike Nesbitt from members of local charity Dementia NI when they met with the Minister at Stormont on Tuesday.
Dementia NI members are all local people living with a diagnosis who work together to drive positive change for people with dementia. They say they were shocked that the Programme for Government 2024-2027 omitted to mention dementia in its priorities for the next three years and have urged the Health Minister to include it in the government’s top priorities.
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There are currently over 22,000 people living with dementia in Northern Ireland. Despite the fact that this figure is set to double by 2040, only two thirds of people with dementia have been diagnosed. Long waits for a diagnosis are leaving people in NI without life-changing treatment and support.
Dementia NI member Graham McElhinney, from Derry, was diagnosed with Alzheimer’s disease in April 2022. But it took almost four years for him to get that diagnosis.
He said: ‘’ It’s so important to get an early diagnosis. You can’t get medication until you get your diagnosis and you might need to try different medications before you find the right one. Early diagnosis might also help to prevent people going to hospitals which are under so much pressure.’’
Fellow Dementia NI member Allison Batchelor, 64, from Belfast, expressed concerns that the draft Programme for Government failed to mention dementia: ‘‘There was mention of ‘time critical’ waiting lists being a priority, but it isn’t clear if this includes dementia. We know that nationally the benchmark timeframe from referral to diagnosis should be six weeks. This is nowhere near what we are hearing from people who are waiting for or have just received a diagnosis.’’
Dementia NI member Stephen Kennedy, from Co Fermanagh, added: “We highlighted to the Minister that the government should treat dementia with respect as much as cancer. You cannot pick and choose your terminal illness. We need to make dementia more of a priority. It’s a growing problem, it’s not going away. It needs to be addressed now, rather than when it’s too late.”
Stephanie Green, Dementia NI Campaigns & Membership Lead, met with the Minister alongside members: ‘‘Dementia is categorised by the Department of Health as a terminal illness. We note in the draft Programme that there will be a focus on cancer and other ‘time critical illnesses’. We are shocked, however, that despite the projection that the number of people with a dementia diagnosis is to double by 2040, dementia is not mentioned.”
She added: “We spoke about how the absence of a mention of dementia in the draft Programme had led our members to feel ‘invisible’ and ‘at the back of the queue’. We also talked about the urgent need to reduce diagnosis waiting times. Dementia NI members are living proof that you can live well with dementia, but an early diagnosis is the key which unlocks access to appropriate medication and support to enable this.
In response, Minister Nesbitt said: “It is vital that we ensure that those in Northern Ireland who are affected by dementia are afforded opportunities and access to improved care and services.
“A key aim in the draft Programme for Government 2024-2027 is to cut health waiting times. This would include waiting times in relation to dementia assessment and diagnosis. I am aware that much work will be required to make this a reality, including a focus on workforce pressures which continue to impact upon waiting times service users encounter.
“Progress has been made, however, in setting up a Regional Dementia Services Project Board, a key focus of which will be to decrease waiting times for assessment and diagnosis and make improvements in this and other areas.”
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