Hansard

Thank you very much, Deputy Presiding Officer, and congratulations on your appointment.

Before I progress with my maiden speech, I declare that I am a councillor for Highland Council and a volunteer with Lyme Disease UK and Lyme Resource Centre.

I thank my predecessors for all their service, and I thank the people of the Highlands and Islands for placing their trust in me and sending me to this Parliament. It is an immense privilege to stand here today, not only because I have the honour of representing the incredible people of the Highlands and Islands, where I was born and raised, but because there was once a time when my family and I feared that I would not be alive today.

There are many issues that I could speak about when it comes to healthcare in the Highlands and Islands, but, today, I would like to speak about something that remains largely hidden from view—chronic illness—and I will do so through my own experience. As a teenager, I was bitten by a tick that infected me with Lyme disease. What should have been a few weeks of treatment became years of medical uncertainty. I was repeatedly misdiagnosed, repeatedly denied treatment and, ultimately, left to fend for myself as my health condition deteriorated.

I spent more than eight years of my life largely housebound and bedbound because of that. While my friends were studying, travelling and building their futures, I was fighting simply to survive each day. It was only through the determination of my family and the financial sacrifices that they made that I am here today. Even now, I live with a lifelong illness that affects every aspect of my day. However, my story should never have been my story, and nor should it become anybody else’s.

Yet, all these years on, I constantly hear from people whose experience mirrors my own. The tragedy is that, for many people, a few weeks of the correct antibiotics can prevent a lifetime of ill health and disability. Despite the National Institute for Health and Care Excellence—NICE—guidelines on Lyme disease coming out in 2018, people are still being refused treatment, prescribed inappropriate antibiotics and diagnosed too late. The main reason for that is that we still do not have an accurate blood test for Lyme disease. Lyme disease is caused by an extraordinarily complex bacteria—but complexity should never be an excuse for neglect. More worryingly still, those failures are not only harming people’s lives; they are costing them.

Scott Beattie was a gamekeeper from Ross-shire who died at Raigmore hospital at the age of just 43 after being misdiagnosed and mistreated. What happened to Scott should never have happened, and we owe it to him, his partner and their two children to do better. We owe it to all those people who were left with so little hope—by the very system that was built to support them—that they felt that they had no choice left but to take their own lives.

The issue with Lyme disease is widespread, from people being infected while walking up Arthur’s Seat, to gardens in the Highlands and Islands being so overrun by ticks that people are scared to let their children play in them. In fact, in a 2024 survey by Lyme Resource Centre, 80 per cent of the respondents reported having been infected with Lyme disease in the Highlands and Islands, yet public awareness remains painfully low. In the same survey, 82 per cent of respondents said that they, a family member, a friend or colleague suspected Lyme disease long before a medical practitioner did.

Patients should not have to diagnose themselves but, sadly, many people who live with chronic illness will recognise the experience of having to self-diagnose. Across Scotland, people with ME, chronic fatigue syndrome, fibromyalgia, endometriosis, postural orthostatic tachycardia syndrome, Ehlers-Danlos syndrome and many other chronic conditions face similar struggles to get diagnosed and to access support and treatment. Although the conditions might be different, their experiences are often remarkably similar to the experiences of those who suffer from Lyme disease.

Perhaps the most damaging experience of all is not simply the illness itself—it is not being believed. People with chronic illness are often told, “It is probably just anxiety” or “You don’t look sick—it is all in your head.” Those are statements that patients should never have to hear. People with chronic illness should not have to sell their homes, spend their pensions or take out huge loans to pay for treatments that should be provided on the NHS. Behind every misdiagnosis and waiting list statistic is a human being whose life has been torn apart.

I remain proud of our NHS and grateful to the staff who work tirelessly in it, but supporting our NHS also means being honest about where it is failing. We need better diagnostics for all chronic illnesses, specialist expertise and greater awareness among healthcare professionals and the public. We need to ensure that patients are listened to when they tell us that they are ill, because my story should never have been my story, and Scott’s story should never have been his.

Across Scotland today, there are people whose stories are still being written, and we have the power to change them. I ask members to come together to ensure that no one in Scotland has to fight harder to be believed than they do to get well. I ask the cabinet secretary to pay tribute to that in her closing speech, and to say whether she is open to having further discussions with me on the topic. Mòran taing.

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