When a nurse called with the results of my 79-year-old mother’s brain scan, she admitted she did not understand what the report meant. She knew I was a doctor, however, and asked me to explain it.
The nurse had not been trained to interpret the results, so I do not blame her.
But the fact that she had been placed in the position of doing a doctor’s job says a great deal about the state of dementia services in this country. The service where she worked simply did not have a doctor.
Last week, Professor Sir Mike Richards, the former director of cancer services in England, said dementia patients were receiving a ‘second-class service’. He called for a revolution in dementia care comparable to the transformation of cancer treatment over the past 50 years, including national waiting-time targets, clear treatment pathways and proper access to diagnostic tests and new medicines.
Louise Casey, who is leading a major review of social care, has also warned of a ‘two-tier system’. She questioned whether dementia has been overlooked because it primarily affects older people.
I was particularly struck by the Alzheimer’s Society’s call for a maximum 18-week wait between a GP referral and a dementia diagnosis. Patients with suspected cancer currently have an NHS target of receiving a diagnosis within 28 days. As I know from personal experience, no equivalent national target exists for dementia.
Dr Max Pemberton watched his dementia sufferer mother decline while she waited 18 months to see a specialist, and says it’s time we stopped tolerating this NHS postcode lottery
Several years ago, I worked in a busy inner-city dementia service where we almost always met our target of seeing new patients within two weeks. If we failed to do so, there would be an investigation.
Every patient was reviewed by a doctor. Doctors and the clinical lead carried out the complex assessments, while the lead clinician, a professor of dementia, also saw patients directly.
After diagnosis, patients were given a named care coordinator and offered individual psychological support, occupational therapy, welfare advice, therapeutic groups, regular medical reviews and a carers’ group for their families.
By contrast, in another part of the country, my elderly mother waited 18 months for an assessment. The service that eventually saw her had no doctor. It was staffed by nurses and nursing assistants, who had only a few hours each week to discuss complex cases with a visiting consultant.
When my mother was finally diagnosed, she was given a leaflet listing charities that offered drop-in support and then discharged. That was the extent of the help she received.
There was no psychological or emotional support, despite the distress her symptoms often caused and the fact that NICE guidelines state people with dementia should be offered this kind of care.
The scan showed that she had not only vascular dementia but also a rarer condition that can cause memory problems: normal pressure hydrocephalus. This occurs when excess fluid builds up in the brain and, without treatment, gradually compresses it.
It explained her difficulty walking and the unusual gait she had developed, as well as her incontinence. It also offered a possible explanation for why her memory, which had been poor for some time, had suddenly worsened.
Hydrocephalus can sometimes be treated by inserting a shunt into the brain to drain excess cerebrospinal fluid and reduce the pressure. Fortunately, because I am a doctor, I was able to explain to the nurse that my mother needed a neurosurgical referral to establish whether she was suitable for the operation.
However, she told me she was not permitted to refer patients to other specialties. A GP would have to make the referral instead.
A further 18 months later, we are still waiting for my mother to see a neurosurgeon. During that time, her condition has deteriorated considerably. She is now bedbound and receives care from two carers four times a day.
It is heartbreaking for my sister and me to watch her decline without knowing whether it is the result of dementia or hydrocephalus, a condition that might still be treatable.
If this can happen to the relative of a doctor—someone who knows what questions to ask, what care should be provided and which decisions to challenge—then it is difficult to imagine how overwhelming the system must be for someone without medical training.
Every time I write about dementia, I hear from readers who describe the same thing: an agonising wait, then a diagnosis, then discharge with nothing.
The Royal College of Psychiatrists’ National Audit of Dementia found this year that the median wait from referral to diagnosis is 137 days and rising. Its previous audit found some patients waiting 347 days.
A Care England survey last year found nearly one in three people waited over a year for a diagnosis. Around a million people in this country have dementia and around a third of them have no formal diagnosis at all.
I can’t think of another area of medicine that deals with a condition this serious and life-limiting, where these kinds of care and delays would be considered par for the course.
In the same country, with the same NHS and the same disease, one patient can get a specialist team within a fortnight and another gets an 18-month wait, a leaflet and a phone call from someone who can’t tell her what her own scan means.
The postcode lottery in dementia care isn’t a quirk of the system. It is the system, and it’s time we stopped tolerating it.
Anne was right to act on her drinking
Anne Robinson and her daughter Emma Wilson attend The Spectator’s 180th anniversary party at the Churchill Hotel in 2008
Anne Robinson, 81, has spoken about the ‘most shameful’ episode of her life: losing custody of her two-year-old daughter Emma when she divorced in 1973 because of what she called her ‘appalling drink problem’. She stopped drinking a few years later and slowly rebuilt the relationship, which she now describes as ‘untouchable’.
People often talk about alcoholics needing to ‘hit rock bottom’ before they change – but in my experience rock bottom is rarely a single dramatic moment. By the time a drinker reaches the point where they can’t ignore the damage their drinking is causing any longer, their family has usually been dealing with the broken promises, arguments and shame for years.
I admire the honest way Anne describes it as something shameful, which she addressed. If you are worried about your own drinking or someone else’s, don’t wait for rock bottom to act. By the time it arrives, your loved ones may already have been there for years.
Yet another review has found catastrophic failings in our maternity services: this time it was home births. One disturbing finding of the Maternity and Newborn Safety Investigations review was some midwives avoided using clear language about warning signs for fear of alarming the mother-to-be. While understandable, this is the wrong instinct. Women are best protected by honesty – and by there being enough staff alert enough to notice something is wrong. Why do we lack the will to fix things?
Prostate Cancer UK says 50,880 men used its online risk checker in the week after Jeremy Clarkson revealed his prostate cancer diagnosis on Clarkson’s Farm, compared with 8,425 the week before. He might just have saved a few thousand lives.
Reading anything – whether it’s a comic or Tolstoy, is linked to lower stress, better wellbeing and a reduced risk of dementia, according to a Cambridge review. Reading with others, in a book club or with a child, apparently brings even more benefits. Try starting with half an hour a night. The Queen’s Reading Room has free ideas and events: thequeensreadingroom.co.uk
