Fifty years ago I witnessed how the NHS discriminates against older women. More recently, I have experienced it myself as part of what should be a national scandal – but it isn’t because it happens mainly to old women, so it’s tucked away on the health pages of newspapers or on specialist programmes.
When I was a teenager, I volunteered with friends to visit patients at my local hospital, the Victoria in Blackpool. We were sent to the female orthopaedic ward. It was a miserable place. The women just lay there; I never witnessed anyone receiving physiotherapy or any other form of therapy. It was the sort of place you would never wish to end up.
But quite soon after, I was put in that ward myself after breaking my leg in my early 20s. If I had thought it was depressing by day, by night it was the stuff of nightmares. The youngest woman after me was in her late 60s. The women were so unhappy they used to wail at night. You had to shout if you wanted a nurse; the nurses came intermittently and, when they did, regularly complained that the women were disturbing them.
For all the faults in the system I have helped to expose as a journalist, I honestly thought it would have been better to be an older woman in the NHS today than it was 50 years ago. Yet my own experience shows that there is still massive prejudice against older people, including women.
I have an auto-immune disease that older people get: giant cell arteritis (GCA). It’s at least three times more common in women than men. It’s the most common form of adult vasculitis – inflammation of blood vessels – and affects thousands of people. It often starts with terrible headaches and scalp tenderness, and sometimes with disturbance in the eyes. The cause is abnormally large cells that develop in the arteries, most commonly in the temporal arteries on the side of the head. As the inflammation moves up the head, the jaw can become severely stiff. If the inflammation goes higher, it can press on the optic nerve at the back of the eye, causing permanent sight loss or even complete blindness.
I have met elderly women who lost their sight through this illness, which is treatable, because the NHS failed them. In the past year, I have learned of two older people who took their own lives after they learned their total blindness could have been prevented with the right treatment. Going blind is terrible. Going blind when it didn’t need to happen is unbearable.
The correct treatment is to give a patient with the recognised symptoms an immediate high dose of steroids to bring down the inflammation and protect their eyesight. Blood tests should be taken and the patient referred very quickly on a fast-track system to a rheumatology hospital department, ideally on the same day, but definitely within three days so that diagnosis can be confirmed and treatment started. If a patient has suffered any sight loss, they should be referred the same day to hospital. But this is often not what happens.
Regularly GPs fail to diagnose or, if they do, they fail to give a high dose of steroids. That’s what happened to me. When I developed severe symptoms, my GP told me, after looking the condition up on Google, to take a lower dose of steroids and gave me her phone number on a piece of paper to ring her if I started losing my sight. Of course, if I had started going blind, you might wonder how I would have been able to read that piece of paper.
Luckily, my sister is a doctor and, as I had a steroid prescription for a related condition, she told me to take a large dose at once. Within less than an hour the inflammation went down. My sight was saved but I was so appalled that I became a trustee of the charity for the disease. What I have discovered as a result is nothing less than a national scandal but, because it is mainly older women who are affected, it is just accepted.
Few places in the UK have a fast-track system to hospital, so even if the GP diagnoses it, people can wait weeks to get to hospital and proper treatment. Where a fast track exists, only a small percentage of sufferers lose their sight. Otherwise, around 20% of people lose some or all of their sight. That is hundreds of people a year losing their sight for no good medical reason. I have talked to one woman, who was a fit woman in her 70s, who went to her GP after going blind suddenly in one eye. He diagnosed GCA, gave her no treatment, and sent her to A&E. They kept her waiting for five hours, despite the GP’s letter with the diagnosis, by which time she had gone completely and irreversibly blind.
If hundreds of children were losing their sight for no good medical reason, it would be on the front page of every paper. Somehow, old women losing their sight doesn’t seem to be a scandal. Hey, we’re getting on; we should expect horrible things to happen to us medically. It’s not like most of us are economically active, so who cares? Of course, the extra scandal about all of this is that elderly people who lose sight become a burden on health and care services. A study showed that saving the sight of people with GCA actually saves the health service money.
This makes me so angry. We patients are given constant excuses as to why it isn’t happening. But we know we would get the right treatment if we were younger. Fifty years on from when I lay in that ghastly ward watching old women lie untreated until they died, I see the same prejudice and ageism in the health system today.
• Dorothy Byrne is head of news and current affairs at Channel 4 and vice-chair of PMRGCAuk