David and his dad, Alan

I want to share a particularly harrowing story about my dad, Alan, and what happened to him here in Doncaster, UK. The BBC has uncovered hundreds of similar cases. Contact me if you have been affected. I'm here to support you.

In 2005 my dad was put on a dopamine agonist medication for restless legs syndrome. Within months he’d put on significant weight and, in his own words, “developed a craving for sweet foods”. At the same time his depression worsened, his sleep deteriorated, his legs swelled with fluid, and he became short of breath – all now recognised as possible side effects of these drugs. 

We raised the alarm repeatedly. In 2021, I even sent the NHS photographic evidence and a long email explaining that my dad was eating around one kilogram of sugar a day, spending £200–£300 per month on sweets and chocolates. Nothing meaningful was done. 

He developed diabetes in 2013 and went on to have over 60 infections, which seemed to coincide with binge eating sugar. Some lasted months. At one point he was eating around 60 choc ices a week plus cakes, sweets and drinking only lemonade. He was hospitalised 36 times, spending nearly a year in hospital in total. 

Some of those admissions were horrifying. On one “discharge”, at 2am, I was left to transfer him from his wheelchair into the car in howling wind and rain while he was bleeding from his cannula site.

Because of the constant sugar intake he lost all his teeth and had terrible gum bleeding while on blood thinners. His pyjamas, bedding and the floor were often covered in blood. On one occasion, at 2am, I had to take him to A&E just to get gauze to pack his mouth. 

Financially, he lost over £300,000 on risky investments and spread betting – behaviour he only started after his dopamine agonist dose was increased. He became paranoid and wanted to divorce my mum. His condition for halting divorce proceedings was directly connected with his hypersexuality. They had been married 47 years. 

In 2017 he was diagnosed with dementia. His medications were never properly reviewed. There was no MRI scan and the psychiatrist did not speak with me or my older brother. There was no GP referral for a thorough assessment and no second opinion. He was assessed during an active infection in hospital – delirious – and labelled. A month later he was assessed privately and the specialist mental health nurse said he did have capacity. In 2018 he even got his driving licence back by retaking his test. In 2023 a Continuing Healthcare nurse and an Admiral Nurse both said he had no mental health issues at all; what he had was hypersexuality, a gambling addiction – and, most destructively, compulsive binge eating. 

In my 6 years of caring for him, the support we were given was consistently too little, too late. In 2019, after nearly thirty recurrent infections, we were given rescue antibiotics. Once I had them, I managed to keep him out of hospital almost completely for over 18 months – but by then the damage had been done. By 2023, he had been bed-bound for two years. He had uncontrolled gout in his hands, fingers, toes, elbows, knees and shoulders, with huge deformities and pain. 

I had to fight for everything: for a hospital bed with side rails so he wouldn’t fall out, for a wheeled commode so I could get him to the bathroom when he’d soiled himself, for a hoist (which arrived shortly before death and with the wrong sling). We only got Continuing Healthcare help in the final two weeks of his life. He was supposedly “fast tracked”; it still took 50 days to get any care in place. I rang and emailed over 100 times – Continuing Healthcare, social services, his GP. His GP didn’t even know what Continuing Healthcare was. When Continuing Healthcare finally answered the phone, I was told I’d used a “rude tone of voice”. I merely stated that I was surprised someone had answered the phone – I literally meant that and nothing more. 

On one occasion, I had to call the GP surgery 144 times before I was finally placed in a queue of seven people. When it was my turn, I was told there were no appointments left for that day and that I had to call back the next morning. This happened repeatedly. Getting through to ask for an appointment became a battle in itself. 

We complained over many years about my dad's dementia diagnosis. Nothing made sense. We were not believed. Not by local services. Not by the police. The Parliamentary and Health Service Ombudsman refused to take his dementia diagnosis further. Everywhere we turned, we were failed. This is still happening today. Nobody wants to listen or take any responsibility. They hide behind their secretaries and the fact that my dad died more than 12 months ago. The answers are all in his GP records. I have plenty more evidence. 

Last July, after reading a BBC News investigation into dopamine agonists, I finally understood what had happened to my dad. He lost everything – his health, his money, his marriage, his reputation – and I am certain the dopamine agonist played a central role. 

His funeral was attended by me, my wife and the cemetery groundsman. That’s it. He lost everyone because of the behaviours this drug drove him into.

Since then, I’ve been diagnosed with ADHD and autism. I now realise my dad almost certainly had the same, which would have put him at even higher risk from these medications. I am fighting for change because I cannot let this happen to other families.

On 13 February this year I spoke about this on BBC News at 6pm. I’m working with my MP, with Restless Legs Syndrome UK and with other charities to push for a full public inquiry into the dopamine agonist scandal. Based on the data and testimonies we already have, I believe this could be bigger than the Post Office scandal, with many thousands more affected. 

People have lost homes, marriages, freedom and even their lives. I’m currently supporting someone who ended up committing fraud to fund gambling while on a dopamine agonist, and I have recently had to respond to an attempted suicide linked to these drugs.

My dad was never properly warned. He was never monitored. Even after I told my GP what had happened to him, I was told dopamine agonists are still first-line treatment, and I was offered them for my own restless legs.

There is a long way to go.

David