Scots have to resort to private healthcare to find out if they have dementia due to NHS delays in diagnostic tests, a charity has warned.
Alzheimer Scotland said interviews with hundreds of patients and carers revealed that some had been waiting over a year for scans to report a diagnosis, “in various areas of Scotland”.
There were cases where people had chosen to “remove themselves from the NHS” and pay private healthcare providers to confirm a diagnosis.
The charity described this as “unacceptable” and said it created problems later for follow-up care and treatment because the pathways are linked to the NHS model.
Experts say early diagnosis is key because treatment of Alzheimer’s disease and other dementias is often most effective when started early in the disease process.
Many of the “breakthrough” treatments have been tested in patients in the more advanced stages of the disease.
Early diagnosis also ensures that patients can plan for the future and can make their own decisions about treatment.
A carer described the time it took for a relative to receive a diagnosis as “extremely distressing” and the charity said “challenging experiences” were evident across the country.
Figures show that the number of patients in Scotland paying for their own treatment has skyrocketed by 68 per cent since the pandemic.
Data from the Private Health Care Information Network (PHIN) shows that the number of people paying for operations, tests and other procedures at private hospitals rose to 4,700 between July and September 2021, up from 2,800 in the same period in 2019.
It comes amid concerns that spiraling waiting lists are creating a two-tier healthcare system in Scotland.
The number of people in Scotland living with dementia is expected to increase by 50% to over 120,000 in the next 20 years.
Alzheimer Scotland said its research had highlighted a “lack of knowledge and understanding” of the disease on the part of GPs.
It was “common” for doctors to leave people with the impression that “there is nothing we can do about dementia” or that they were “too young” to have the condition.
People who experienced this approach from doctors said they had received “little or no input into their care,” which compounded their feelings of isolation.
The charity said: “Many of the people we engaged with expressed concern about their GP’s lack of knowledge and understanding of dementia.
“This included examples of people who were advised by their GP that dementia was not a viable diagnosis because they were ‘too young’.
“They felt that this lack of knowledge and understanding delayed their diagnosis and made the path to diagnosis unnecessarily difficult.”
One carer said: “We need 100% improvement in the education of all staff within the caring profession on all aspects of how to properly treat people living with dementia.”
Participants highlighted the need to address preconceived ideas and assumptions about dementia, including the fact that “it is a disease unique to older people” that only affects memory.
Alzheimer Scotland surveyed 127 people with dementia and 171 carers and ex-carers with a further 45 people sharing their views online.
The research will help inform the Scottish Government’s new National Dementia Strategy.
The charity said it heard “heartbreaking stories” from people who “felt abandoned after a diagnosis, particularly during the pandemic when many services have stopped.
The vast majority of people said that contact with their diagnostic consultant stopped almost immediately after they were told they had the disease.
Participants reported that annual checkups or reviews were not routinely performed after a diagnosis, whereas this was done for conditions such as diabetes and asthma.
Access to post-diagnosis support was “inconsistent” despite the Scottish government’s promise that all patients should be entitled to one year with a liaison worker.
The lack of available spaces in care homes, particularly in rural and island communities, was highlighted and there were examples of people being asked to move to a facility more than 150 miles away.
Alzheimer Scotland said removing people from familiar environments also placed an “additional travel burden” on carers.
The cost of residential care was described as a “serious cause for concern” with weekly rates exceeding £1,000, while carer allowances were described as “a drop in the bucket”.
Henry Simmons, chief executive of Alzheimer Scotland, said: “There were many challenging issues and experiences that people shared with us.
“However, an important theme was how important it is to receive an early diagnosis.
“Unfortunately, we have heard firsthand from people who wait more than a year for a diagnosis.
“We have also heard from a small number of people who have sought access to private healthcare for a diagnosis.
“This is not an acceptable position, and more needs to be done to address existing backlogs and waiting lists within NHS services, which is why this is one of the key recommendations Alzheimer Scotland has made to the Scottish government in our independent organizational report on the priorities for the next National Dementia Strategy.
“Early diagnosis increases opportunities to benefit from pharmacological and non-pharmacological therapies that may improve cognition and/or other symptoms of dementia, as well as opportunities to participate in clinical research.
“Early diagnosis also offers the opportunity to become more actively involved in decision-making, including health and wellness decisions that can maximize quality of life, as well as plan for the future.”
Dr Sandesh Gulhane MSP, Scottish Conservative health secretary, said: “If ever anything exposed the grim reality of Scotland’s NHS state under Humza Yousaf’s watch, then this is it.”
“It is beyond appalling that some patients and their families, who are concerned about the possibility of having dementia, have had no choice but to go into privacy.
“This is a complete dereliction of duty by the Secretary of Health in failing to ensure that these vital services are readily available, particularly during a cost of living crisis.
“Vulnerable patients will no doubt have been forgotten due to Humza Yousaf’s overwhelming failures. He cannot stay in office any longer and must be fired.”
Kevin Stewart, Minister for Mental Wellbeing, said: “It is important to get a timely diagnosis of dementia and appropriate post-diagnosis support.
“That’s why we’re investing £3.5m a year for post-diagnosis dementia support, as well as investing £1m over two years to boost support for the dementia community.
“This is in addition to an estimated £2.2 billion spent on dementia services by local partners.
“We are currently collaborating with Alzheimer Scotland and other stakeholders on a new dementia strategy for Scotland, scheduled for spring 2023. Lived experience has been critical to this work and will inform the priorities of the new strategy.”