When the nurse rang with my 79-year-old mother’s brain scan results, she admitted she didn’t know what the report meant. But she knew I was a doctor, so asked me to explain it to her.
The nurse hadn’t been trained for this, so of course I don’t blame her.
But it speaks volumes about the state of dementia services in this country that she was put in the position of having to do a doctor’s job, because the service she worked in didn’t have one.
Last week Professor Sir Mike Richards, the former director of cancer services in England, said that dementia patients are getting a ‘second-class service’ and called for a revolution in care similar to the transformation in cancer treatment over the past 50 years, including national waiting time targets, clear treatment pathways and proper access to tests and new drugs.
Louise Casey, who is leading a major review of social care, also warned of a ‘two-tier system’ and questioned whether dementia has been neglected simply because it mostly affects the elderly.
I was struck by the call by Alzheimer’s Society for a maximum 18-week wait between referral by a GP and diagnosis. The current NHS target for patients with suspected cancer is within 28 days – but there are no such national targets for dementia, as I know from personal experience.
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
A few years ago I worked in a busy inner city dementia service where we nearly always met our own target of seeing new patients within two weeks. If we didn’t, there would be an investigation.
Every patient was reviewed by a doctor, the complex assessments were carried out by a doctor and the clinical lead, who would also see patients, was a professor of dementia.
Once diagnosed, patients were given a named care coordinator and offered individual psychology, occupational therapy, welfare advice, therapeutic groups, regular medical reviews and a carers’ group for the family.
Meanwhile, in another part of the country, my elderly mother waited 18 months for an assessment. The service that eventually saw her had no doctor and was run by nurses and nursing assistants, who had just a few hours a week allotted to them to discuss the difficult cases with a visiting consultant.
Once my mum finally had her diagnosis, she was handed a leaflet with details of charities offering drop-in support and discharged. And that was it.
There was no psychological or emotional support, even though she was often very distressed by her symptoms, and even though NICE guidelines say people with dementia should be offered exactly that.
The scan had shown that she had not just vascular dementia but a rarer condition that also causes memory problems called normal pressure hydrocephalus, in which excess fluid builds up in the brain. Without treatment the brain is slowly crushed.
This explained the problems she’d had with walking and the unusual gait she had developed, the incontinence, and why her memory, poor for some time, had suddenly deteriorated.
Hydrocephalus can sometimes be treated by inserting a shunt into the brain, to lower the pressure that’s built up by draining excess cerebrospinal fluid. Fortunately, as a doctor I was able to explain to the nurse that my mum would need to be referred to neurosurgery to see if she was suitable for this operation.
But she told me she wasn’t allowed to refer patients to other specialities and this would need to be done by a GP.
We are still waiting for her to be seen by a neurosurgeon a further 18 months later. In that time she has deteriorated significantly. She’s now bedbound. She has two carers, four times a day.
It is heartbreaking for my sister and me to watch her decline, not knowing whether it’s due to dementia or the hydrocephalus, which might be treatable.
If this can happen to the loved one of a doctor – who knows what to say, what should be happening and what to push for –imagine what it’s like for someone who isn’t medically trained.
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
