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750852
registered interest false remove filter
date less than 2017-07-11more like thismore than 2017-07-11
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Batten Disease more like this
house id 1 more like this
legislature
25259
pref label House of Commons more like this
question text To ask the Secretary of State for Health, what the average annual cost is to the NHS of care and treatment of people with (a) any Neuronal Ceroid Lipofuscinosis disease and (b) the CLN2 variant of that disease. more like this
tabling member constituency Nottingham North more like this
tabling member printed
Alex Norris remove filter
uin 4140 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2017-07-18more like thismore than 2017-07-18
answer text <p>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.</p><p> </p><p>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.</p><p> </p><p>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.</p> more like this
answering member constituency Winchester more like this
answering member printed Steve Brine more like this
grouped question UIN
4139 more like this
4141 more like this
question first answered
less than 2017-07-18T09:59:34.403Zmore like thismore than 2017-07-18T09:59:34.403Z
answering member
4067
label Biography information for Steve Brine more like this
tabling member
4641
label Biography information for Alex Norris more like this