Tuesday, June 11, 2013

Fobbed off by your doctor? Now a second opinion from an expert is just one phone call away


'Over-protective' Mary's sick children were turned away from their GP
 
  • Desperate, she took them to the Honorary Doctors' Association 
  • The new charity offers free advice and treatment from eminent GPs







Four years ago, Mary Foord-Brown was in despair, afraid she was never going to find the right medical help for her two children.

Branded an 'over-protective' mother who was 'inventing' illnesses for them, she had just been struck off by her GP surgery in Woodbridge, Suffolk.

She had two sick children at home - Lilac, then 12, and Victor, ten - suffering from scarlet fever, and subsequently a form of pneumonia. This had come after a litany of other illnesses. 

Desperate: Turned away by her GP surgery, Mary Foord-Brown despaired over the health of her two children - until she discovered the Honorary Doctors' Association
Desperate: Turned away by her GP surgery, Mary Foord-Brown despaired over the health of her two children - until she discovered the Honorary Doctors' Association

'Anyone could see they weren't well - they seemed exhausted and didn't pick up after normal childhood illnesses,' says Mary, 48, a charity volunteer who is married to Martin, 58, a psychologist.

'I took them to the GP a number of times, and eventually waited for the out-of-hours service to click in as I felt I got better care then. The children were both treated with antibiotics but neither seemed to be getting better.

'They needed to see a paediatric consultant but I couldn't get a referral.'

Indeed, the GP surgery's response was a letter informing the family that 'due to a breakdown in relationships' they would no longer treat them.

'I felt as if the NHS washed its hands of us,' says Mary.

Desperate, she called a private doctor, although she could not afford prolonged private treatment - and the secretary suggested she contact a new organisation, the Honorary Doctors' Association.

This charity offers free advice and treatment from some of the most eminent private and NHS consultants and GPs in the country.

It was set up four years ago by Marius van Oldenborgh, an ophthalmologist, to help people crying out for a second opinion after they have been failed or misdiagnosed by the NHS or private practice in the UK.

'Many of the people we see are genuinely in despair,' says Mr van Oldenborgh. 'We provide a lifeline which is free at the point of care.

'We do not see ourselves as operating “in competition” with the NHS and fully support its core principles. We are not a political organisation. We simply offer a second opinion.

'If an NHS doctor disagrees with our diagnosis, it's up to the patient to decide which advice to follow.
At first I was concerned we might encounter opposition from doctors, but in fact we have been met with tremendous goodwill. 

'We now have around 140 private and NHS doctors and consultants registered with us, but there are around 900 doctors in the UK I can ring and ask for advice, and so far no one has refused to help.

'I have developed quite a thick skin in ringing up eminent consultants and saying: “Look, could you see this person for free?” The majority of doctors see their profession as a calling, and are frustrated by the limitations under which they have to work.

'Many GPs have only about eight minutes to see a patient, and some are seeing 60 patients a day. Almost inevitably there will be misdiagnosis, lack of knowledge and wrong treatments occurring.' 

The Honorary Doctors' Association (soon to be renamed the Patient Care Trust) was set up after Mr van Oldenborgh realised he was treating one in ten of his patients free, as they couldn't afford to pay him.

'I rang around other specialists and consultants and found many did the same. I thought if we formed ourselves into a network, we could offer this vital second opinion service.'

He emailed 200 eminent consultants and doctors, and more than half replied immediately that they would become involved.

Last year the charity helped almost 200 patients. Its helpline is manned by just Mr van Oldenborgh and a staff of two.

'I listen to their case, then call on my specialists and refer their cases on. Most patients can see a specialist within weeks.

'We see people who have exhausted every avenue in the NHS, been given inadequate explanations, insufficient follow-ups or have been misdiagnosed. Many could never afford to see a private doctor for a second opinion.'

Relief: Now that Mary and her children have been accurately diagnosed by the HDA, they can lead happy, normal lives
Relief: Now that Mary and her children have been accurately diagnosed by the HDA, they can lead happy, normal lives


For Mary, the relief of being able to speak to a medical professional was 'immense'.

'Mr van Oldenborgh became an “umbrella” mentor for our care. He researched our case and made invaluable suggestions.'

With the HDA's help, Mary discovered that she and her children suffer from an auto-immune condition, Hughes Syndrome (or 'sticky blood'), where the blood clots too quickly. Patients often have intense migraines - Victor is particularly prone to these, which also caused him to vomit; he used to suffer from blackouts, too. 

As well as Hughes Syndrome, Lilac and her mother have systemic lupus, another auto-immune condition, which causes joint pain and extreme fatigue. 

With the right diagnosis and care, the children now lead happy, normal lives. 

Victor, who takes daily aspirin and a drug called plaquenil, no longer has blackouts and both children are doing well at school - Victor is also schooled partly at home. 

Mary has found a new GP practice, which she describes as 'excellent', and  sees various paediatric experts.

'The HDA gave me a sense of security and professional support at a difficult time,' she says.

Lifeline: The Honorary Doctors' Association offers free advice and treatment from some of the most eminent private and NHS consultants and GPs in the country
Lifeline: The Honorary Doctors' Association offers free advice and treatment from some of the most eminent private and NHS consultants and GPs in the country


For two years, Snehal Thakar, an IT consultant in the City, struggled to get specialist treatment for persistent and increasingly crippling pain above his knee, caused by a footballing injury.

'I was constantly fobbed off by my GP, who said the pain would go away, but it was getting progressively worse. He'd just give me more painkillers,' says the 45-year-old from Harrow, Middlesex.

The pain became so excruciating that he couldn't walk more than 40 metres. 'I finally stood in my GP's surgery and said I would refuse to leave until I was referred to a consultant.'

An orthopaedic consultant said - wrongly, it turned out - that the problem was fragments of bone in his ankle, and Snehal  had an operation to remove these.

When the pain persisted, an ultrasound scan - the first he'd been offered - revealed the real cause: a blood clot above his knee.

'My consultant said I might need an artery bypass but this wouldn't be available for at least two years.'

A year later, with the pain badly affecting his daily life, Snehal was at the end of his tether.

A colleague mentioned the HDA and he was referred to John Scurr, a world-leading vascular surgeon working privately in London.

'For the first time, I felt someone was really listening. He said if I'd been given the right treatment in the beginning it would have cleared the clot, but now it was too big and I would need a bypass.

'Having an eminent surgeon confirm the diagnosis was such a relief. He also recommended daily exercises that eased the pain.

'I'm now armed with expert knowledge to fight my case for a bypass operation on the NHS.'

Retired nursery nurse Wendy Stokoe credits the HDA with saving her sight. 

Wendy, 63, from Billericay in Essex, had been taking strong painkillers for 15 years for back pain. Around four years ago, her sight started deteriorating.

'My GP said it was glaucoma. Gradually, my sight became worse and worse and I could only see a pinpoint of light. I couldn't drive, I could barely read and hardly left the house. I was told there was nothing that could be done.'

Mary went to Marius van Oldenborgh. 'I said I couldn't afford lengthy private treatment, and he said he'd treat me for free. 

'He investigated tirelessly, and finally told me he didn't think it was glaucoma but a toxic build-up from the painkillers. He advised me to stop taking one, and gave me daily B12 vitamin injections

'Over a matter of months, my eyesight began to return. I firmly believe that but for the work of the HDA, I would be blind.'

The HDA is 'only a small organisation', says Mr van Oldenborgh, 'but we are growing all the time'.

He adds: 'We don't feel we hold all the answers, but we do our best to help. With the patient's permission, we like to write to their GP saying what we would recommend.'

For Mary, the crucial thing was that an expert was really listening. 'I felt, for the first time in years, as if someone actually cared.'

Visit www.hdapatientcaretrust.com or call 020 7935 8366.