NHS dementia diagnosis takes up to a year

Thousands suffering ‘cruel’ delays in many trusts as charities call for urgent action to speed up referrals

PEOPLE with suspected dementia have been “left in limbo” with waits of up to a year for diagnosis, with thousands facing delays of at least six months, an investigation reveals.

Charities said elderly people were being left in “excruciating uncertainty” after contacting their GP because of symptoms, such as memory loss, only to end up stuck on long waiting lists without treatment or support.

Experts said the difficulties getting a diagnosis were a “tragedy”, warning that delays could lead to a deterioration in the condition, making it far more difficult for the vulnerable to cope.

The figures, from 28 NHS organisations, show 13,800 patients are on waiting lists for memory clinics, which diagnose conditions such as Alzheimer’s disease.

They include 5,722 patients who have spent at least three months waiting for a diagnosis, after being referred by a GP. Among them are 2,545 patients who have faced a wait of at least six months.

The figures show that at some NHS trusts, those with suspected dementia are waiting as long as a year for a diagnosis.

Experts said even these figures are likely to be the tip of the iceberg. Separate statistics show the proportion of people with dementia receiving a diagnosis has fallen dramatically since the pandemic, with 35,000 fewer diagnoses in the past two years. Experts said the delays were “horribly cruel”. The figures, revealed in response to Freedom of Information (FOI) requests, show an average wait of 359 days at Northampton Healthcare NHS foundation trust.

The trust had 451 on its waiting lists for memory clinics, including 35 patients waiting more than 26 weeks.

Bradford District NHS Foundation trust in West Yorkshire had an average wait of close to eight months, while for Birmingham and Solihull the figure was seven and a half months.

Cambridge and Peterborough NHS Foundation trust recorded average waiting times of more than six months,.

The figures suggest average waiting times of around four months, which is a month longer than when the last national audit of services was carried out, in 2019.

Caroline Abrahams, charity director at Age UK, said: “It’s a tragedy that there’s such a postcode lottery and that so many people are waiting so long.”

She urged the NHS to take action to speed up these diagnoses, saying: “When the story of the pandemic is written there’s no doubt that people living with dementia will emerge as one of the hardest hit groups of all. Delays of six months or more feel horribly cruel.

Fiona Carragher, at the Alzheimer’s Society, said: “Not knowing whether you have dementia can be an extremely anxious time, leaving people unable to access vital support and treatment.”

The charity is calling on the Government to provide at least £70 million to reduce the backlogs.

Ms Carragher also urged health officials to audit memory services, to understand which places are worst hit and improve the support offered to those with suspected dementia.

The figures come from an FOI of 28 NHS trusts and health systems providing dementia diagnosis services in England, who were asked to provide up-to-date figures, and provided responses in November and December last year.

The NHS does not publish waiting times for dementia patients. Experts said the failure to even track such waits was symptomatic of a deeper neglect of the most vulnerable.

Latest figures estimate that there are now around 900,000 people living with dementia in the UK.

Bradford District Care NHS Foundation trust said some patients had waited longer than they would like, amid substantial staff shortages.

Norfolk and Suffolk NHS Foundation trust said some staff from dementia assessment services had been redeployed to inpatient wards during the height of the pandemic, saying this had led to a bigger waiting list and longer wait times for assessments.

An NHS England spokesman said: “The number of referrals to memory clinics is now increasing and the NHS is offering support to patients and their families while they await a diagnosis.”