Baroness Blackwood of North Oxford
Main Page: Baroness Blackwood of North Oxford (Conservative - Life peer)Covid-19: People with Neurological Conditions
Baroness Blackwood of North Oxford Excerpts
Baroness Blackwood of North Oxford (Con) [V]
My Lords, I would like to raise an especially neglected area of neurology: autonomic dysfunction. This neglect has been exacerbated, but not created, by the pressures of the pandemic. I declare my interest as chair of Genomics England and an autonomic patient myself. I thank Professor Chris Mathias in particular for his help in preparing this contribution.
Autonomic dysfunction describes several conditions that cause malfunction of the autonomic nervous system, which controls the automatic survival functions of the body that we do not consciously think about, such as heart rate, blood pressure or kidney function—processes that we all take for granted until they go wrong. Autonomic dysfunction can be intermittent; it ranges from mild inconvenience to severe disability. For example, those with mild autonomic mediated syncope can faint once or twice in their lives, but others can faint several times a day, risking falls, broken bones and, sometimes, traumatic brain injury. Postural tachycardia syndrome, which I have, causes a wide range of autonomic symptoms. It is a deceptive, invisible illness that disproportionately affects young women; they can look very healthy when not symptomatic so are often diagnosed with anxiety or eating disorders and disbelieved. However, researchers compare the disability of PoTS to that of COPD or congestive cardiac failure.
Autonomic dysfunction can also occur as secondary to neurological conditions such as Parkinson’s, spinal injuries and MS, as well as common conditions such as diabetes and rheumatoid arthritis. It is not rare: it affects 70 million people worldwide, but it is accepted that the true prevalence is higher due to underdiagnosis. In most cases there is no cure, but it is possible to improve symptoms with medication and lifestyle adaptations. However, despite the high prevalence and significant disability, most patients take years to be diagnosed due to poor clinical and public awareness.
Even when diagnosed, getting treatment is extremely challenging. The few clinics that do exist are simply overwhelmed. Patients from Derriford Hospital autonomic clinic have contacted me in desperation because their clinic is being closed without a further plan for autonomic patients in that region. It is the only service in the area; other autonomic clinics are not taking referrals due to demand. It is a picture of a few specialists offering pockets of excellence and responding to aspects of autonomic dysfunction, rather than integrated services that can fully respond to the multisystem challenges that the condition presents. I believe that UCL now has the only integrated autonomic unit in the country.
Low awareness among non-specialists, especially in primary care, means that patients often have inconsistent management and difficulty in accessing special care. Together, this means unnecessary deterioration for patients. This is widely reported by patients and clinical experts but noble Lords do not have to take their word for it. The DWP’s own guide to medical conditions states:
“Although 25% of people with PoTS are unable to work or attend education, 80% to 90% will improve with treatment and 60% will return to previous levels of functioning.”
The opposite is of course true. It could not be clearer: autonomic dysfunction is a common condition that causes significant disability but, with diagnosis and treatment, symptoms can be mitigated and managed. Despite this, our clinical services, training and awareness are woefully inadequate, and autonomic patients are suffering serious inequalities as a result. I ask the Minister in her response to acknowledge the inadequacy of autonomic services and set out her plan to rectify this, including the publication of a national neurology strategy and clear national leadership.