To ask the Secretary of State for Health, how many people in the UK are undergoing care and treatment for (a) all Neuronal Ceroid Lipofuscinosis diseases, (b) the CLN2 and (c) the CLN5 variants of that disease.
18 July 2017
The support and care given to this group of people includes a range of treatments and supportive measures, including: anti-epileptic medication; physiotherapy; treatment for spasticity; and treatment for dystonia (including bracing and wheelchairs). Progressive feeding problems require speech and language management and gastrostomy insertion. Pain management is required for end of life care.
Given the wide range of treatments and supportive measures, it is not possible to estimate the average annual cost of treating an individual with a Neuronal Ceroid Lipofuscinosis disease, especially since some of these costs will fall to NHS England and some to clinical commissioning groups.
It is estimated that there are between 45 and 90 people undergoing care and treatment for all Neuronal Ceroid Lipofuscinosis diseases of whom between 19 and 38 have CLN2 and fewer than 10 have CLN5.