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798649

	registered interest
	date	01/12/2017
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Hereditary Diseases: Medical Treatments
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, what recent assessment he has made of the adequacy of treatment provision for people diagnosed with Acid Sphingomyelinase Deficiency.
	tabling member constituency	Coventry South
	tabling member printed	Mr Jim Cunningham
	uin	117043
	answer	answer is ministerial correction date of answer 06/12/2017 answer text <p>Acid sphingomyelinase deficiency is a lysosomal storage disorder (LSD). NHS England and its predecessor organisation have commissioned a national service for patients with LSDs since April 2005. The service is commissioned from eight expert centres and NHS England monitors these expert centres against the agreed service specification:</p><p><a href="https://www.england.nhs.uk/wp-content/uploads/2013/06/e06-lyso-stor-dis-child.pdf" target="_blank">https://www.england.nhs.uk/wp-content/uploads/2013/06/e06-lyso-stor-dis-child.pdf</a></p><p>The active caseload of LSD patients treated in the service is just under 2,000. NHS England’s Highly Specialised Commissioning team conducts an annual clinical audit meeting with the multidisciplinary teams from all the providers and with representatives from relevant patient groups.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 06/12/2017 12:32:27 answering member 4067 label Biography information for Steve Brine
	tabling member	308 label Biography information for Mr Jim Cunningham

798650

	registered interest
	date	01/12/2017
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Hereditary Diseases: Medical Treatments
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, what recent assessment he has made of the adequacy of treatment provision for people diagnosed with Alström syndrome.
	tabling member constituency	Coventry South
	tabling member printed	Mr Jim Cunningham
	uin	117044
	answer	answer is ministerial correction date of answer 06/12/2017 answer text <p>NHS England and its predecessor have commissioned the Alström Syndrome Service (for all ages) since April 2009 at two centres including the Birmingham Women and Children’s Hospital (for paediatric service) and the University Hospitals of Birmingham (for the adult service). These two centres work together, including on transition planning and work in line with the Alström service specification.</p><p> </p><p>There are currently 74 patients on the caseload. NHS England’s Highly Specialised Commissioning team conducts an annual clinical audit meeting with the multidisciplinary team from both providers and the patient group Alström Syndrome UK, the last was held in March 2017.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 06/12/2017 12:33:55 answering member 4067 label Biography information for Steve Brine
	tabling member	308 label Biography information for Mr Jim Cunningham