Dementia diagnosis delays forcing Scots into private healthcare

There were cases where individuals had chosen to “remove themselves from the NHS” and pay private healthcare providers to have a diagnosis confirmed.

The charity described this as “unacceptable” and said it created problems further down the line for follow-up care and treatment because pathways are linked to the NHS model.

Experts say timely diagnosis is key because the treatment of Alzheimer’s disease and other dementias is typically most effective when started early in the disease process.

Many of the ‘breakthrough’ treatments have been trialled on patients who are in the more advanced stages of the disease.

Early diagnosis also ensures patients can plan for the future and can make their own decisions about treatment.

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One carer described the time taken for a relative to receive a diagnosis as “extremely distressing” and the charity said “challenging experiences” were evident across the country.

Figures show the number of patients in Scotland funding their own treatment has soared by 68 per cent since the pandemic.

Data from the Private Healthcare Information Network (PHIN) shows that the number of people paying for operations, tests, and other procedures at private hospitals climbed to 4,700 during July to September 2021, up from 2,800 for the same period in 2019.

It comes amid concern spiraling waiting lists are creating a two-tier system of healthcare 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 by GPs.

It was “common” for people to be left with the impression from doctors that “there’s nothing we can do for dementia” or that they were “too young” to have the condition.

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People who experienced this approach from medics 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 raised concerns about the lack of knowledge and understanding of dementia by their GP.

“This included examples of individuals being 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 educating all staff within the caring profession on every aspect of how to properly deal with those living with dementia.”

Participants highlighted the need to address pre-conceived ideas and assumptions about dementia including it “being a disease of only older people” that only affects memory.

Alzheimer Scotland surveyed 127 people with dementia and 171 carers and former 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 “harrowing stories” from people who“felt abandoned after a diagnosis particularly during the pandemic when many services ground to a halt.

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The vast majority of individuals said contact with their diagnosing-consultant stopped almost immediately after they were told they had the disease.

Participants reported that annual check-ups or reviews were not routinely carried out after a diagnosis while this was done for conditions such as diabetes and asthma.

Access to post-diagnostic support was “inconsistent” despite a pledge by the Scottish Government that all patients should be entitled to a year with a link worker.

The lack of available spaces in care homes was highlighted, particularly in rural and island communities 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 fees in excess of £1,000 while carers allowances were described as "a drop in the ocean".

Henry Simmons, Alzheimer Scotland Chief Executive said: “There were many issues and challenging experiences that people shared with us.

“However, a significant theme was how important it is to receive an early diagnosis.

“Sadly we have heard first hand from people waiting in excess of a year for a diagnosis.

“We have also heard from a small number people who sought to access private health care for a diagnosis.

“This is not an acceptable position, and more needs to be done to address the existing delays 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 organisational report on the priorities for the next National Dementia Strategy.

“Early diagnosis increases opportunities to benefit from drug and non-drug 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 welfare decisions that can maximise quality of life, as well as to plan for the future.”

Scottish Conservative Shadow Health Secretary Dr Sandesh Gulhane MSP, said: "If ever anything exposed the grim reality of the state of Scotland's NHS on Humza Yousaf’s watch then this is it.

"It is beyond appalling that some patients and their families who are gripped with worry that they might have dementia have been left with no option but to go private.

"This is a complete dereliction of duty from the Health Secretary to fail to ensure these lifeline services are easily available particularly during a cost-of-living crisis.

"Vulnerable patients will undoubtedly have fallen through the cracks due to Humza Yousaf’s overwhelming failures. He cannot stay in post any longer and must be sacked."

Kevin Stewart, Mental Wellbeing Minister said: “Getting a timely dementia diagnosis and suitable post-diagnostic support is important.

"That is why we are investing £3.5m annually for post-diagnostic dementia support as well as investing £1m over two years to boost dementia community support.

"This is in addition to the £2.2 billion estimated spend on dementia services by local partners.

“We are currently engaging with Alzheimer Scotland and other stakeholders on a new Dementia Strategy for Scotland, scheduled for Spring 2023. Lived experience has been central to this work and will inform the priorities of the new strategy.”