The invisible killer

Kids struck down by Lyme disease are being failed by doctors...who often don’t even know how to diagnose it

CHILDREN are being forced to suffer the effects of a debilitating disease – because the NHS cannot accurately diagnose it.

A Scottish Mail on Sunday investigation found young people – from infants to teenagers – have contracted Lyme disease, typically after being bitten by a tick.

They have been left with heart palpitations, severe vomiting, memory loss and tremors – and in extreme cases are even unable to walk.

Yet the health service admits its Lyme disease tests are unreliable.

This newspaper is aware of nine families whose children all underwent NHS testing – with the results coming back negative.

In each case, however, the children were tested at more specialised clinics abroad – which conclusively showed they were suffering from Lyme disease.

Last night, parents were joined by opposition politicians and campaigners calling on the Scottish Government to invest more money to improve NHS Lyme testing.

They also demanded an inquiry into how the NHS is diagnosing children with the disease, as well as calling for a specialist clinic to be set up and for an awareness campaign.

Scottish Conservative health spokesman Miles Briggs said: ‘I know, from my father’s experience of suffering from Lyme disease for many years, that it is difficult to diagnose and utterly devastating. It is vital that anyone suffering from Lyme disease is diagnosed quickly and treated properly.

‘It appears this isn’t happening, so the SNP must find out why and improve that patient pathway. A specialised clinic may be necessary in order to pool clinical experience and resources.’

He added: ‘Additionally, it is crucial that the Scottish Government increases awareness of this disease so people are aware of the symptoms and can seek appropriate medical treatment as necessary.

‘If there is any suggestion current patients have been in any way mistreated or neglected, the SNP must investigate immediately.’

A Scottish Labour health spokesman said: ‘Lyme disease is a serious, debilitating condition and the NHS must be given the resources it needs to identify and treat it. The Scottish Government should look at how Lyme disease is treated in Scotland – and also explore the viability of whether a specialist Lyme disease clinic is necessary.’

The infectious disease, known officially as Lyme borreliosis, can cause extreme fatigue and joint pain and, in the most serious cases, paralysis and even death.

One teenager we spoke to experiences constant nausea, short-term memory loss and blackouts and has been bedridden for three years. Another suffers heart palpitations, severe anxiety and vomiting.

A four-year-old boy has such serious breathing difficulties he sometimes turns blue and such lethargy that he can’t hold a drinks cup.

Each child was either bitten by a tick – and developed a bullseye rash, a key sign of the infection – or has a mother who suffers from Lyme disease. But each of their NHS tests came back negative.

Health service guidelines acknowledge that NHS tests vary in accuracy, depending on the stage of the disease when diagnosis is attempted.

Tests for early Lyme are only 50-60 per cent accurate. For longer onset symptoms, tests are around 90 per cent accurate.

When the parents took their children to be tested privately by specialist clinics and laboratories in Europe – costing them thousands of pounds each – every result was positive.

Last night, Dr Janey Cringean of

the Tick-borne Illness Campaign Scotland said: ‘The current tests are unreliable and do not cover all tickborne pathogens known to exist in Scotland. Treatment is brief and, when patients do not recover, they are denied further help.

‘To do that to adults is bad enough, but to do it to children is scandalous. They suffer continuing and worsening symptoms, often in silence, unable to understand what is happening to them.

‘It is utterly heartbreaking to watch children and their families suffer in this way.’

Natasha Metcalf, co-founder of Lyme Disease UK, said: ‘It’s hard for younger children to articulate the fluctuating symptoms caused by Lyme disease – and their mood, behaviour and cognition can be affected, which makes it an even more traumatic experience

‘An inquiry for Lyme disease in Scotland would be a very useful exercise. A specialist clinic is desperately needed, as well as a vast amount of research into the disease.’

There are about 3,000 new cases of Lyme disease diagnosed in the UK each year. In Europe, there have been 360,000 cases reported over the past two decades.

A Scottish Government spokesman said: ‘We recognise more needs to be done to tackle Lyme disease. We are working to raise knowledge and awareness among health professionals and the public.’

A spokesman for NHS National Services Scotland (NSS) said: ‘Lyme borreliosis has been identified as a priority area for health protection in Scotland.

‘NSS has recently commissioned a Scottish Reference Laboratory for Lyme disease and tick-borne infections, based at Raigmore Hospital in Inverness.

‘It will provide specialist diagnostic and confirmatory testing services for Lyme disease to all NHS boards in Scotland.’