The Neurological Alliance looks after the interests of patients with neurological conditions, and campaigns on their behalf. One of the problems that they have identified with the Health and Social Care Bill that Parliament has proposed is the lack of care for patients with rare conditions. Neurology as a speciality is very diverse and challenging and includes more than its fair share of rare diseases, as well as the most common strokes and dementia. They suggest that the new local commissioning style will make provision for these rare conditions not cost-effective, and therefore not provided. No decision the NHS has to make is going to be easy, but one would hope that cost-effectiveness is not given absolute priority in all cases. Although rare by definition, the number of patients that suffer from all the rare diseases is actually quite considerable, 1 in 17 people, and that many patients can not be left on the dark. If the commissioners say 'no' to providing adequate services for rare diseases, they are not treating a very large number of patients, 3.5 million patients in the UK!
"Collectively rare diseases are not rare"
See Rare Disease UK for the stats on patients affected by rare diseases
See Neurological Alliance PR