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1663746

	registered interest
	date	13/10/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Cystic Fibrosis: Mental Health Services
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what proportion of (a) paediatric and (b) adult cystic fibrosis centres did not provide at least 85 per cent of their patients with psychological support at their annual review in (i) 2021 and (ii) 2022.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	201599
	answer	answer is ministerial correction date of answer 26/10/2023 answer text <p>The information is not available in the requested format.</p><p>However, tables showing that the number of centres where the percentage of adult cystic fibrosis patients and paediatric cystic fibrosis patients seen by a clinical psychologist within 12 months prior to the latest annual review was less than 85% in 2021/2022 and 2022/2023 are displayed below.</p><p>Adult cystic fibrosis patients seen (e.g. annual review screening, in-patient or out-patient consultation) by a clinical psychologist within 12 months prior to latest annual review:</p><p> </p><table><tbody><tr><td><p> </p></td><td><p>2021/2022</p></td><td><p>2022/2023</p></td></tr><tr><td><p>Centres reporting data for this indicator during the reporting period</p></td><td><p>12</p></td><td><p>15</p></td></tr><tr><td><p>Number of centres reporting fewer than 85% of patients had seen a psychologist in the 12 months before their latest annual review</p></td><td><p>7</p></td><td><p>10</p></td></tr><tr><td><p>Number of centres reporting that more than 85% of patients had seen a psychologist in the 12 months before their latest annual review</p></td><td><p>5</p></td><td><p>5</p></td></tr></tbody></table><p> </p><p>Paediatric cystic fibrosis patients seen (e.g. annual review screening, in-patient or out-patient consultation) by a clinical psychologist within 12 months prior to latest annual review:</p><p> </p><table><tbody><tr><td><p> </p></td><td><p>2021/2022</p></td><td><p>2022/2023</p></td></tr><tr><td><p>Centres reporting data for this indicator during the reporting period</p></td><td><p>16</p></td><td><p>18</p></td></tr><tr><td><p>Number of centres reporting fewer than 85% of patients had seen a psychologist in the 12 months before their latest annual review</p></td><td><p>11</p></td><td><p>14</p></td></tr><tr><td><p>Number of centres reporting that more than 85% of patients had seen a psychologist in the 12 months before their latest annual review</p></td><td><p>5</p></td><td><p>4</p></td></tr></tbody></table><p> </p><p>Source: NHS England Specialised Services Quality Dashboard (SSQD).</p><p> </p><p>SSQD reporting was stood down during the Covid pandemic between April 2020 and March 2022 which may interfere with completeness.</p> answering member constituency Colchester answering member printed Will Quince question first answered 26/10/2023 08:30:03 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656168

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Screening
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, whether he plans to meet with the UK National Screening Committee to discuss the timescale for implementing an in-service evaluation for spinal muscular atrophy screening in the NHS.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196161
	answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196162 196166 196168 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656169

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Screening
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what information the UK National Screening Committee has provided on the (a) format, (b) scale and (c) duration of the upcoming in-service evaluation for spinal muscular atrophy screening in the NHS.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196162
	answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196161 196166 196168 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656170

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Screening
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of an in-service evaluation for spinal muscular atophy in the NHS on (a) patients and (b) patient families outside of the pilot area.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196163
	answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196164 196165 196167 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656171

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Screening
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of opportunities available to the patient community to input into the (a) design and (b) delivery of the UK National Screening Committee’s upcoming in-service evaluation of spinal muscular astrophy screening in the NHS.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196164
	answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196163 196165 196167 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656172

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Screening
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) ensure and (b) monitor the (i) introduction, (ii) delivery and (iii) completion of the in-service evaluation for spinal muscular atrophy screening in the NHS.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196165
	answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196163 196164 196167 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656173

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Screening
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the timelines for the UK National Screening Committee’s in-service evaluation for severe combined immunodeficiency screening in the NHS; and whether his Department has plans to reduce the timeline for the upcoming in-service evaluation for spinal muscular atrophy screening.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196166
	answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196161 196162 196168 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656174

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Screening
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impact of the UK National Screening Committee commissioning a cost-effectiveness modeling study for spinal muscular atrophy on the timeline for implementing newborn screenings across the UK.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196167
	answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196163 196164 196165 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656175

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Babies
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, whether he has made an estimate of the number of babies born with spinal muscular atrophy that may experience irreversible disability between August 2023 and the conclusion of the review into newborn screening.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196168
	answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196161 196162 196166 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd

1656176

	registered interest
	date	01/09/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Spinal Muscular Atrophy: Babies
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, whether he has made a comparative assessment of health inequalities for babies that have had access to newborn screening for spinal muscular atrophy with those that haven't.
	tabling member constituency	Bootle
	tabling member printed	Peter Dowd
	uin	196169
	answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196163 196164 196165 196167 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
	tabling member	4397 label Biography information for Peter Dowd