Headaches that may mean you are about to go BLIND
. . . and how the NHS is letting thousands needlessly fall victim
Sue Chandler wasn’t too worried when she woke one morning in September 2010 with muscle pain in her shoulders and upper arms. at 64, she put it down to being ‘over-exuberant’ in the garden.
nineteen months later, after suffering an increasing number of other symptoms and a series of calamitous misdiagnoses by GPs, overnight she went completely and irreversibly blind in her right eye.
‘It’s exactly the same now,’ says the former Ministry of defence employee from dorchester, dorset.
‘It’s like looking through a very thick, grey net curtain. I can make out some light but not any shapes.’
She had become another victim of Giant Cell arteritis (GCa), an easily treated but frequently missed condition that needlessly claims the sight of some 2,400 mainly elderly people every year.
For months, Sue’s symptoms had been mistaken for everything from the usual aches and pains of old age to toothache, ‘frozen shoulder’ and a trapped nerve.
But doctors missed several of the telltale signs of GCa that should have rung alarm bells, including an aching jaw and a tender scalp.
even when the vision in her right eye began to blur, her GP failed to make the connection — and four days later, on the morning of april 10, 2012, Sue woke to find she’d lost all sight in the eye.
at a& e, an op h t h a l mologi s t immediately diagnosed GCa and she was put on a high dose of the steroid prednisolone. It was another two agonising weeks before doctors could be sure her other eye had been saved.
Just over a year later, as Sue was still struggling to come to terms with her loss of sight, her husband ron succumbed to liver cancer.
‘The past five years I would not wish to repeat,’ she says today. ‘But it’s no good sitting at home feeling sorry for yourself.’
She will never fully trust doctors again, though.
‘The GP was devastated that she’d missed it. But her mistake has affected my life.’
although it’s not known what triggers it, GCa — also known as temporal arteritis — is an autoimmune condition, where the immune system attacks the body’s own cells.
In GCa, this causes inflammation of the cells in the walls of arteries, especially those supplying parts of the skull. This starts to restrict blood f l ow, which explains the classic symptoms such as headaches, tenderness of BuT the scalp and jaw pain.
the arteries that supply the optical nerves at the back of the eyes are particularly vulnerable, and once blood is cut off the nerves quickly die and t he resultant blindness is irreversible.
GCa most commonly strikes people in their 70s and the sudden sight loss often leads to depression. Some victims have even been driven to suicide, says Sophy Proctor, of the charity PMrGCa uK, which helps people with GCa and the linked but less serious condition Polymyalgia rheumatica, or PMr (this causes severe stiffness and pain in the hips, shoulders and neck, and one case in five leads to GCa).
‘Frequently those affected have until then been entirely independent,’ she says. ‘ When their sight is taken away it has an incredible impact.
‘They suddenly can’t drive, they can’t go out where they want, and it has a terrible impact on their mental health and on their family, who then have to care for them.’
The tragedy is that for patients such as Sue, this suffering is needless, as a high dose of cheap steroids, administered in good time, treats the condition successfully and prevents blindness.
Yet many GPs and even a&e departments fail to recognise the symptoms until it’s too late.
The answer, as Sir Bruce Keogh, medical director of nhS england, acknowledged in January 2014 in a letter seen by Good health, lies in a fast-track referral scheme, developed by a rheumatology professor at Southend university hospital, essex.
The scandal is that nhS england has failed to roll out the scheme nationwide — even though its own experts have confirmed that doing so would not only prevent those 2,400 people (about 20 per cent of the 12,000 cases of GCa diagnosed each year) losing their sight, but would save the health service millions of pounds annually.
The Southend scheme has dramatically cut the proportion of GCa patients with sight loss, from 37 per cent to 9 per cent. It has done this by giving GPs and a&e staff crash courses in recognising symptoms and the importance of rapid treatment. at the hospital, the rheumatology department is ready to begin high-dose steroid treatment at short notice.
lord Wills, the former MP for north Swindon and a justice minister between 2007 and 2010, has been pressing the Government to act over GCa for the past four years. he is infuriated by the lack of progress.
‘every year, more than 2,000 people, mainly older women, go blind,’ he told Good health.
‘as a result, there’s a lot of misery and a lot of suffering and it costs the taxpayer many millions of pounds a year to look after them.
‘So why on earth does the nhS not just roll it out?’
There seems to be no argument that there is a problem, and that a solution is readily available.
Indeed, in July 2012 the health minister, earl howe, admitted that ‘up to 3,200 people annually may be suffering partial or total loss of vision as a result of Giant Cell arteritis’, adding that ‘many of these cases may have been preventable’.
On earl howe’s advice, in november 2013 lord Wills wrote to Sir Bruce Keogh urging him to extend to the entire country the fast-track scheme developed in Southend. In a reply, dated January 2014, Sir Bruce himself agreed that this approach — known as the fasttrack pathway — represented ‘a new way of doing things which is better and costs no more’.
The nhS, he added, ‘must learn from such innovative examples’ and he proposed a meeting ‘ to determine how to disseminate this good practice effectively’.
That meeting took place more than a year ago and, according to lord Wills, it was agreed with senior representatives of nhS england that ‘milestones towards a national rollout of the fasttrack pathway would be agreed by the summer’.
But since then nothing has happened, says lord Wills — and thousands have lost their sight because of ‘a bureaucracy which seems to have forgotten that it’s there to help people’.
Ironically, cost- effectiveness experts from nhS england took part in a study seen by Good health that demonstrates not only that the fast-track pathway — which was developed by rheumatologist Professor Bhaskar dasgupta — saves sight, but if rolled out nationwide would save the nhS £4.8 million every year ‘in diagnosis and treatment alone, excluding social costs’.
a spokeswoman for nhS england told Good health it had not ‘reneged on any commitment to adopt and disseminate a fast-track referral pathway for Giant Cell arteritis’. extending the scheme across the country was ‘not within nhS england’s gift to deliver’, the LOrd spokeswoman insisted.
WIllS greeted this response with incredulity. ‘ There was an explicit agreement, which I spelled out, that work would be undertaken to establish milestones towards a national rollout of the Southend fast-track pathway,’ he says. ‘So while the assertion that nhS england did not agree to implement a national rollout might be literally correct, it nonetheless travesties what was agreed.’
also at t he meeting were representatives of PMrGCa uK.
‘It’s astonishing that nothing has happened,’ says the charity’s Sophy Proctor.
usually, the sight in one eye will be lost first and ‘this is when the penny drops’ among doctors unfamiliar with the condition, explains Professor dasgupta. Steroid treatment is started urgently ‘because within a week the other eye can go as well, and that is a real disaster’. nevertheless, each year 10 per cent of patients — more than 240 — lose the sight in both eyes.
nhS england points to the official guidelines on the diagnosis and treatment of GCa, last revised i n July 2014. But Professor dasgupta says that while these guidelines, which are based on his work, are correct, they are ‘ not enforced and that’s the problem’.
‘They depend on people reading [and acting upon] them,’ he says.
For lord Wills, the pressing question remains: ‘ how many more people have to go blind before someone does what so obviously needs to be done to deliver a process which would stop thousands going needlessly blind every year and save hundreds of millions of pounds of taxpayers’ money?’
FOR help and advice, call PMRGCA UK’s helpline 0300 111 5090 or go to pmrgca.co.uk to find your nearest support group.