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Neurology services have come under serious scrutiny for falling behind other condition areas in recent years. So it is seriously worrying that NHS England has decided not to retain the position of national clinical director for adult neurology beyond March 2016, when a new Public Accounts Committee (PAC) report has found that health services for people with neurological conditions in England are not good enough (UK Parliament, 2016).

So many neurological conditions are dangerously invisible, not least epilepsy. Although many young people with epilepsy are independent, they still face hidden challenges and we need to think carefully about how best to handle their care. Many services, unfortunately, fail to manage epilepsy optimally—often patients with poorly controlled seizures are not being monitored any more often than those whose epilepsy is well controlled. While it is essential to identify at-risk patients who need closer management to help bring their seizures under control, additional factors may be putting young people at risk.

Around 5 000 people in the UK are living with motor neurone disease (MND), and wheelchairs are required in 80% of cases. However, many people with MND across England experience unacceptable challenges in getting access to a wheelchair. MND’s major challenge is rapid progression: 50% of patients will die within 14 months of diagnosis, making it harder to provide the right equipment in time. Without suitable specialist equipment, some patients are left unable to stay at home with family and friends who are willing to care for them. Variation in waiting times across the country is a huge problem. Some areas quickly meet the needs of MND patients, while others struggle. The lack of national criteria and dedicated budgets leads to the differences in service provision at a local level. This often sees people receiving a wheelchair that they can no longer use, too late.

Patients living with a chronic condition are at risk of being exploited by the lucrative market in false hope and bogus promises, particularly if there is no cure or if current treatments are not providing adequate relief. Patient organisations see it time and again. People with diseases like Parkinson’s or multiple sclerosis are offered unlicensed stem cell treatments, and expensive unorthodox cancer ‘cures’ are peddled as an alternative to conventional treatment. What these situations have in common, is the veneer of respectability. Whether this comes from the supposed involvement of ‘international experts’ or the false impression that trials have taken place, we need to make sure that we help our patients to critically scrutinise such extraordinary claims. Patients with long-term conditions are now overwhelmingly using the internet to find out about their condition. Although this means they are increasingly able to self-educate, it also presents the risk that they will come across unreliable treatment claims. At worst, misinformation markets potentially harmful unproven therapies to vulnerable people for often very significant sums of money. Some marketing is so sophisticated and persuasive that even the most alert of us can be fooled into thinking it could be bona fide. Patients might wonder what could possibly be wrong with trying complementary therapies available online. Indeed, complementary therapies, alternative therapies and natural remedies are often put in the same category and considered harmless. However, whereas complementary therapies, such as massage or aromatherapy for relaxation are used alongside conventional medicine to make a patient feel and cope better with treatment, alternative therapies are used instead of conventional medicine. Alternative therapies are risky for a number of reasons. First, the alternative treatment itself could cause harm. Second, discontinuing the conventional treatment could exacerbate the underlying condition. And it’s worth remembering that just because something is presented as a ‘natural remedy’, that is not an assurance that it is safe: some of the deadliest known toxins are natural, and natural substances could interact with other medication being taken. For example, some herbal remedies are more likely to cause seizures than to cure them.