Fobbed off by doctors for decades and left to suffer – all because they didn’t diagnose our common conditions. Now top experts reveal how to stop it happening to YOU

Many regard getting a diagnosis, good or bad, as preferable to living with uncertainty. But if that diagnosis is the wrong one, the repercussions can be devastating.

Every year in this country, tens of thousands of patients will have been given an incorrect diagnosis or mistakenly given a clean bill of health.

About 32,000 people will experience ‘avoidable significant harm’ – mainly as a result of delayed diagnosis or misdiagnosis by their GPs, according to a study in BMJ Quality & Safety in 2021, which reviewed the experiences of patients across 12 GP surgeries in England between April 2015 and March 2016.

‘Significant harm’ was defined as anything from needing extra care – to death.

Researchers said conditions affecting the urinary tract (such as urinary tract infections), the skin or metabolic disorders such as diabetes, topped the list of those most commonly missed.

And there can be multiple, unexpected knock-on effects for those whose symptoms get overlooked or mislabelled.

‘Beyond the physical toll, the psychological impact is significant,’ says Rachel Power, chief executive of charity the Patients Association, which conducted a survey of more than 1,000 people about their experience of diagnostics within the NHS last year.

‘More than three in five (61 per cent) of patients experience anxiety while waiting for tests or results, and a third report their mental health suffering. These delays don’t just affect individuals – they disrupt families, work and everyday life.’

‘Only 11 per cent of patients we surveyed reported never facing issues with diagnostic tests, while others endured long waits, delays in treatment, and – in the worst cases – devastating losses.’

But what can you do to ensure your diagnosis is the right one? In this vital guide, experts share the mistakes that can be made with common symptoms and, crucially, how to get a second opinion.

We also spoke to people who’ve waited months, years or even decades to get the correct diagnosis. Here they share the physical and emotional impact this had – and what they would have done differently.

Dystonia: 50-year delay

Sarah de Costobadie, 57, a sign language interpreter, lives in Stoke-on-Trent. She says:

From age seven, I’ve seen doctor after doctor for symptoms they couldn’t explain – from stomach aches to migraines and low mood.

At 12, I noticed my hands developed a tremor. By 16, I had serious depression. I was from a nice family and doctors inferred I was spoilt and had no reason to be depressed and unwell. 

At 19, I was given antidepressants. My 20s passed in a blur of headaches, depressive bouts and new tremors. I missed out on dating, marrying and having children. Often I was too ill to even attend friends’ weddings.

At 26, I developed a side-to-side head tremor, as if I was saying ‘no, no’, and was referred to a neurologist who said it was a benign essential tremor and nothing to worry about.

Finally, in 2020, during a Zoom call with a friend, I thought the screen was at a funny angle and went to adjust it before realising in fact I’d fallen over. I saw a locum GP and begged for a referral to the Walton Centre in Liverpool – a specialist neurology hospital.

I had an MRI and two specialists watched me walk. Moments later, they diagnosed cervical dystonia – a condition where the neck muscles contract involuntarily, causing the head to twist or turn to one side. Suddenly everything made sense: I had answers to the questions I’d had since I first became unwell aged seven.

The neurologist explained that people with dystonia are more at risk of depressive episodes. I was given Botox injections in my neck to stop the spasms. They’ve helped a lot. I don’t blame doctors for failing to diagnose me but nearly 20 of them didn’t spot the dystonia, which raises questions about the recognition of it.

I lost so much of my life to this condition but am just thankful I can still work and enjoy my life now.

Expert comment: ‘Dystonia is a neurological movement disorder affecting around 100,000 people in the UK,’ says Dr Richard Ellis, consultant neurologist at The Walton Centre NHS Foundation Trust. ‘It causes involuntary movements which can be specific to certain tasks [for example, writer’s cramp] or can be present continuously,’ he explains.

‘These contractions can affect any body part, but most commonly the head, neck and limbs. It can be painful and also cause tremor.

‘Because symptoms vary widely – from mild muscle cramps or tightness to painful spasms, dystonia can be easily overlooked or mistaken for other conditions.

‘Regrettably, this means dystonia is often misdiagnosed or diagnosed late, sometimes decades after the onset of symptoms. Effective treatments include medications, physical therapies, Botox to target the overactive muscles and specialist surgeries in severe cases.’

Visit thebraincharity.org.uk for more information.

Heart condition: 17-year delay

Kez Dancy, 35, a carer, lives in Somerset with husband Dave, 35, who works in sales, and their three children. She says:

It was only after I contracted Covid, in 2022, that I got some answers to symptoms I’d been suffering since my teens. My heart rate spiked at 170 – way above the normal of 60 to 100 beats per minute – and I ended up in hospital. 

Doctors did a simple test: they measured my heart rate while sitting down and then asked me to stand and took it again.

If it increases by more than 30 beats per minute, you might have something called postural orthostatic tachycardia syndrome (PoTS, when heart rate increases rapidly after getting up from sitting or lying down).

I cried for days after I was given the diagnosis because I’ve had symptoms of PoTS since I was 15.

Now I know what had caused frightening episodes of feeling as if my heart was bouncing out of my chest, gasping for breath, dizziness – but for many years I was told it was anxiety.

I’d often end up in A&E, feeling like I was going to die, only to be told it was in my head.

I was 15 when I first saw my GP about these weird episodes, who said it was common for teenage girls to suffer palpitations. He put it down to anxiety, prescribed antidepressants and that was it.

My parents believed the doctors, so we thought the stress of school was making the ‘anxiety’ worse. I left at just 15 before taking any exams. I’ve spent thousands on therapists – none of them (nor me) ever questioned my diagnosis.

Looking back, the misdiagnosis made me anxious. I’m not ashamed to say I thought about taking my own life on more than one occasion. Nothing helped. I often couldn’t get out of bed.

I now take beta-blockers which slow down my heartbeat. I can take my kids to school, pop to the shop and am hoping to go on holiday.

But I also felt resentful it took 17 years; I’ve missed out on so much.

I recently set up a Facebook group to help others – PoTS Chat UK – and it’s obvious that I’m not the only person to go for years without a correct diagnosis for this debilitating condition.

Expert comment: ‘PoTS affects hundreds of thousands of people in the UK and I’ve lost count of the number who’ve broken down in tears when I’ve diagnosed them,’ says Dr Sanjay Gupta, a consultant cardiologist based in York.

‘It’s often misdiagnosed as anxiety, and the notion it’s all in a patient’s head can leave them feeling depressed and lonely.

‘PoTS is a problem with the autonomic nervous system, which controls functions such as heart rate, digestion and respiration.

‘Symptoms include palpitations, headaches, and sometimes they can become randomly freezing cold or boiling hot.

‘Most people with PoTS have a genetic vulnerability to it that can be triggered by an infection, trauma or a period of prolonged bedrest. Sometimes puberty sets it off, but it can occur at any time.

‘Although it’s not curable, symptoms can be improved with medication to reduce adrenaline surges in the body, physiotherapy and some lifestyle modifications.

‘I advise patients to try something for two weeks: drinking more water, staying warm, eating a bit more salt. If it makes a difference, keep it up.’

Potentially deadly lung clots: 3 months

Shavorne Wilbraham, 46, an office worker, lives in Stoke-on-Trent. She says:

Over four weeks I called my GP surgery 12 times begging to be seen. Fast-forward three months and I was in a hospital bed, a consultant telling me if I had not come in that day, I’d be dead. 

A scan showed I had 23 clots in my lungs that were gathering around my heart. I was told they would have been there for six to eight months. It was a shock. I knew I didn’t feel right but I had no clue what was wrong with me.

Three months before I’d had a mild pain in my leg, but as I cycle 25 miles every Saturday, I put it down to a pulled muscle and after a few weeks it disappeared.

But soon after, in September 2021, I started feeling agitated and generally ill. I rang my GP but it was during Covid and it was impossible to get an appointment. I’d be triaged by the receptionist and refused an appointment.

For three months I struggled on, going to work. I was breathless which stopped me from cycling and swimming. I declined rapidly to being unable to walk short distances. 

Then one day at work I began sweating, my heart was hammering in my chest and I went to the loo at work and coughed up what looked like a red splatter of paint. I drove myself to hospital and staggered into A&E, where they took one look and did a blood test called D-dimer – a test for clots.

My result was 2,653 – a normal level is under 50, indicating I had a severe clot. After that, things moved fast. They didn’t know what had caused the clots but I was admitted for three days and given blood-thinning medication.

Back at home I couldn’t stand, had lost a stone in two weeks and suffered psychological stress. I still feel the psychological scars – having my fears dismissed as they were has affected my confidence, and I have to take blood thinners for life.

Expert comment: ‘A deep vein thrombosis is where you have a clot in a deep vein usually in the leg,’ says Professor Beverley Hunt, Founder of Thrombosis UK.

‘I would say at least 20-30 per cent of blood clots get missed: for instance, a painful leg early on is usually the only symptom and this can be mistaken for a strained muscle.

‘If bits of the clot or all of it break off and travel through the bloodstream and the heart, they can block the blood supply to the lungs – a pulmonary embolism (PE). This can be fatal. We at Thrombosis UK feel there is a diagnostic problem among healthcare professionals, they are not taught the many ways that DVT and PE can present.’

Pancreatitis: Nine years

Cornelius Flavin, 50, an electrician, lives in Hemel Hempstead with wife Vicki, 51, a paramedic and their four children. He says:

I didn’t challenge my diagnosis and almost paid the price with my life. For years, I experienced pain which hit only at night and only on my right side. Just as I was dropping off, I’d feel as if there was a vice around my stomach. It was agony and kept me awake. But every time, by morning it would vanish.

Like many men, initially I ignored it. But after two years it got particularly severe, so I saw my doctor and was diagnosed with a hiatus hernia [where part of the stomach pushes into the chest]. I was told that was probably causing my pain.

Over the next few months, the night-time pain got worse. Then, in March 2022, I had it in the day for the first time and it was the most intense I’d ever experienced.

It was like having a vice clamped around my mid-section; I couldn’t move. Vicki took one look at me and rushed me to hospital.

A doctor queried if I had pancreatitis – inflammation of the pancreas – but as my pain eased slightly another doctor told me it might be Covid and discharged me.

But I had even worse, crippling pain two months later and went back to hospital where this time a scan confirmed pancreatitis and I was taken straight to intensive care.

My stomach ballooned with fluid, and I had to have litres of it drained. A consultant took my wife aside and told her it was 50/50 that I’d pull through. After two-and-a-half weeks, I was allowed home. The doctors told me it was idiopathic – i.e. brought on with no known cause – but the night-time pain was a warning sign. The hernia was a red herring.

Now because of the damage to my pancreas I am careful with what I eat and have to take Creon with food – it is to replace the enzymes my pancreas can no longer make that are important for the digestion. I am lucky to be alive.

Expert comment: ‘Pancreatitis is inflammation of the pancreas,’ says Christian Macutkiewicz, a consultant general, pancreatic and hernia surgeon based in Manchester.

‘The pancreas sits behind the stomach, deep in the abdomen and so pain is often felt like a sharp stabbing in the upper central abdomen that pierces through to the back.

‘Symptoms can be put down to indigestion, stomach ulcer or a muscular injury. There are two types of pancreatitis: acute, which is severe and comes on quickly; and chronic, which is often a slow-burning pain in the abdomen and back.

‘Chronic pancreatitis often presents with back pain and problems with digestion accompanied by changes in bowel habits and so these patients often get investigated for problems with their bowels such as IBS.

‘GPs don’t often see acute pancreatitis and so it is not very prominent in their minds.’

Visit gutscharity.org.uk for more information.

Parkinson’s: Two years

Christine Stanley, 62, a retired PE teacher and mother of two, lives in Nottingham with husband David, 68, a company director. She says:

For two years I lived not only with the fear something was seriously wrong but also the frustration that no one was listening to me. I told my GP I suspected I had Parkinson’s, but when I was referred to a consultant I was told I was too young.

My suspicion started after I was putting trampolines out one day at work and, suddenly, couldn’t move my shoulder. Within days, I couldn’t even tap my hands on a table at the same time. When I saw my GP he suggested it was muscle weakness due to radiotherapy I’d had for Hodgkin lymphoma when I was 29.

But soon things that normally smelt strongly to me – such as bananas or my coconut shampoo – didn’t smell at all, which I knew was a sign of Parkinson’s.

Still I waited six months before I went back to the GP – I was embarrassed to trouble him again – and once again my symptoms were attributed to my cancer treatment. I went back and forth to the GP countless times. I felt so frustrated.

Finally, two years after the weakness in my shoulder started in 2018, I paid £265 to see a consultant neurologist, who specialised in movement disorders. Less than ten minutes into the appointment he said ‘I think you have Parkinson’s’.

I was devastated. A friend brought me home and told Dave, who simply replied: ‘In sickness and in health.’ We hugged.

I am taking medication to control tremors that now affect my hands and I try to make the best of life. But I am angry it took so long – the delay robbed me of the chance to start my treatment sooner.

Expert comment: ‘Parkinson’s is difficult to diagnose as it’s a complex neurological condition that affects everyone differently,’ says Dr Jonny Acheson, an emergency consultant clinical lead at the Parkinson’s UK Excellence Network.

‘There are also common misconceptions that only older men get Parkinson’s and that everyone has a tremor. But it can affect anyone, and at any age, and they don’t all present with shaking. There are more than 40 symptoms of Parkinson’s – from tremor, slow movements, stiffness and pain to problems with sleep and mental health.

‘We’ve heard of people being misdiagnosed with anything from a frozen shoulder or anxiety to a stroke.

‘Early signs can include loss of sense of smell or handwriting getting smaller, but many are unaware of that, which means that they may not seek medical advice. There is no definitive test for Parkinson’s and it is only diagnosed by a specialist.’

Additional reporting: Jill Foster

‘How could I not be angry about my misdiagnosis’

Clair Kennedy, 46, an early years’ practitioner, lives in Orpington, Kent, with her partner Aisam, 49, a finance manager, and their three children. She says:

When I sought help about lower-back pain my GP put it down to working with young children and sent me for physiotherapy. Now I know that for the year I spent trying to get a diagnosis I actually had lung cancer that had spread to my spine.

Looking back, it seems ridiculous but I stuck at the physio – doing the exercises I was given daily – puzzled as to why the pain got worse and worse.

After six months, I went back to my GP but, even though I said I was struggling, I was told there was nothing to worry about. It was only after catching Covid in January 2021 and being unable to breathe, plus the unbearable back pain, that I dared venture back to my GP a year after my first symptoms, who sent me for a chest X-ray.

As she took the images the radiographer asked if I had been in an accident because I had three fractures in my spine and a shadow on my lung.

I was sent for a CT scan, which showed I had a 4cm tumour in my left lung, a smaller one in my right lung – and the cancer had spread to my spine, hence the fractures.

I’m now on brigatinib, a targeted treatment which stops cancer cells from multiplying, and it is shrinking the tumours. But the cancer has progressed to my brain where I have eight tumours, so I will be having radiotherapy. I have handed in my notice at work as I need to focus on my health.

I had no cough, which is probably more typical for lung cancer, but the pain was so bad someone should have picked up on it sooner. I’ve discovered I have the ALK gene, which puts me at risk of lung cancer. Am I angry? How could I not be?

Expert comment: ‘In more than 40 per cent of cases, lung cancer is diagnosed when it has already spread,’ says Dr David Gilligan, a consultant oncologist at Cambridge University Hospitals. 

‘Symptoms include cough, breathlessness and coughing up blood. But in some, the symptoms might be subtle and so people put off seeking help as they think the symptoms are due to a cold, for instance.

‘One of the difficulties in diagnosing lung cancer early is that symptoms may not be present. This is one reason why in England the NHS is introducing lung cancer screening, also called targeted lung health checks. 

This is being rolled out over the next few years and is likely to be of massive benefit to people who are at high risk of lung cancer as it will catch it much earlier.

‘With ALK-positive cancer that has spread to other parts of the body, treatment with targeted therapies can control it effectively, sometimes for many years.’