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Written Question
Chromosome Abnormalities
Thursday 22nd June 2023

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether he plans to add to the guidance accompanying the Down Syndrome Act 2022 to address 22q11.2 Syndromes and other chromosomal disorders.

Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

We recognise that there are overlaps between the services that support people with Down syndrome and those that support people with other genetic conditions and/or a learning disability. The Down Syndrome Act guidance will focus on the unique support needs of people with Down syndrome. We will, however, highlight where best practice in service delivery would also be applicable to those with another genetic condition and/or a learning disability, including DiGeorge syndrome (22q11.2 deletion syndrome). There will be a full public consultation on the guidance once a draft has been produced.


Written Question
22q11.2 Deletion Syndrome
Wednesday 21st June 2023

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will add 22q11.2 Syndromes to the standard blood screen test for new-borns.

Answered by Neil O'Brien

There are no plans to add 22q11.2 syndromes to the new-born blood spot screening programme. Proposals to expand screening for new-born blood spot screening must be submitted to the UK National Screening Committee (UK NSC) for assessment against its criteria to ensure screening is introduced where the benefit clearly outweighs the harm.

The UK NSC runs an annual call for topics in September where members of the pubic and stakeholders can submit new topics to be considered. The UK NSC carried out a review for 22q11.2 Syndrome in 2018 following an annual call submission and recommended that at the time the evidence was insufficient to recommend a screening programme.


Written Question
Blood: Contamination
Monday 17th February 2020

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what his Department’s policy is on short-term financial support for people affected by the contaminated blood scandal before the conclusion of the Infected Blood Inquiry.

Answered by Nadine Dorries

Since 1988, successive Governments have voluntarily provided ex-gratia financial and non-financial support for people affected by HIV and/or hepatitis C through historic treatment with National Health Service-supplied blood or blood products in the 1970s and 1980s.

In 2017, country specific support schemes were set up in England, Northern Ireland, Scotland and Wales, responsibility for these is devolved to the four nations.

We are working with our partners in the devolved nations and other relevant Government departments to improve parity of support across the United Kingdom.


Written Question
Infected Blood Inquiry
Wednesday 15th January 2020

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent progress has been made in the inquiry into the contaminated blood scandal; and if he will make a statement.

Answered by Nadine Dorries

The Infected Blood Inquiry chaired by Sir Brian Langstaff (a retired High Court Judge) and sponsored by Cabinet Office has been sitting since September 2018. So far, the inquiry has heard written and oral evidence from hundreds of those ‘infected and affected’.

The next session of the Inquiry will begin in February 2020, when it will hear from its own expert panel on the ‘psycho-social impact’ of infection and what followed for individuals. Evidence from ‘institutional’ witnesses such as from Government and the National Health Service is expected to be sought later this year.


Written Question
Cannabis: Medical Treatments
Tuesday 9th April 2019

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions his Department has had with NICE on the prescription of medicinal cannabis oil for patients with (a) cerebral palsy and (b) arthritis.

Answered by Seema Kennedy

The Department has not discussed with the National Institute for Health and Care Excellence (NICE) the prescription of medicinal cannabis oil for patients with cerebral palsy and arthritis.

NICE is the independent expert body that develops authoritative, evidence-based guidance for the National Health Service on whether drugs and other treatments represent a clinically and cost effective use of NHS resources. NICE is developing guidance on the prescribing of cannabis-based medicinal products by October 2019. It will be based on the best available international evidence and will have been produced using NICE’s world-renowned process for delivering such guidance.

Following a public consultation on the draft scope, the guidance will focus on the use of cannabis-based products in the treatment of chronic pain, intractable nausea and vomiting, spasticity and severe treatment-resistant epilepsy, conditions where the evidence is currently most advanced. A consultation on the draft guidance is expected in the summer.


Written Question
22q11.2 Deletion Syndrome
Wednesday 6th March 2019

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential effect on the public purse of adding a test for 22q11 deletion syndrome to the newborn blood spot test.

Answered by Steve Brine

No assessment has been made on adding a test for 22q11 deletion syndrome to the newborn blood spot test as the United Kingdom National Screening Committee’s (UK NSC) had not previously been asked to look at this condition.

However, as part of the UK NSC`s annual call for topics 2018, a proposal was received to consider adding the condition of 22q11 deletion syndrome (also known as DiGeorge syndrome) to the new born blood spot programme.

This is the first time the UK NSC has been asked to consider screening for 22q11. The UK NSC will be reviewing the proposal at its meeting at the end of the month and to agree next steps. Minutes of the meeting will then be published six weeks after and be made available at the following link:

https://www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc


Written Question
22q11.2 Deletion Syndrome
Wednesday 6th March 2019

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what his Department’s policy is on adding a test for 22q11 deletion syndrome to the newborn blood spot test.

Answered by Steve Brine

No assessment has been made on adding a test for 22q11 deletion syndrome to the newborn blood spot test as the United Kingdom National Screening Committee’s (UK NSC) had not previously been asked to look at this condition.

However, as part of the UK NSC`s annual call for topics 2018, a proposal was received to consider adding the condition of 22q11 deletion syndrome (also known as DiGeorge syndrome) to the new born blood spot programme.

This is the first time the UK NSC has been asked to consider screening for 22q11. The UK NSC will be reviewing the proposal at its meeting at the end of the month and to agree next steps. Minutes of the meeting will then be published six weeks after and be made available at the following link:

https://www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc


Written Question
22q11.2 Deletion Syndrome
Tuesday 21st November 2017

Asked by: David Duguid (Conservative - Banff and Buchan)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what his policy is on (a) research into, (b) treatment of and (c) raising awareness of 22q11.2 Deletion syndrome.

Answered by Jackie Doyle-Price

22q11.2 deletion syndrome, also known as DiGeorge syndrome, is a disorder that involves many different areas of the body and the severity can vary among patients.

The National Institute for Health Research (NIHR) and Medical Research Council support research in response to proposals from the research community and welcome high quality applications for support into any aspect of human health, including 22q11.2 deletion syndrome. These proposals are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

A number of United Kingdom centres contribute to active research programmes such as recently published research lead by Great Ormond Street into Thymus transplantation for complete DiGeorge syndrome. NIHR also fund relevant research at Great Ormond Street Biomedical Research Centre and the Maudsley Biomedical Research Centre.

There are 32 Immunology centres accredited including a number of paediatric immunology centres, Great Ormond Street Hospital, Newcastle Children’s Hospital, Birmingham and Manchester which provide services for these patients. These services are geographically spread out to meet the access needs of patients across the UK. Conditions such as 22q deletion syndrome are also an integral part of the immunodeficiency section of the training curriculum for paediatric and adult immunologists thus ensuring that expertise is acquired by these doctors and dispersed throughout the National Health Service.

An important landmark for patients with rare diseases was the publication of the 2013 UK Strategy for Rare Diseases to address the needs of all those affected by rare diseases. A progress report on the Strategy will be published in early 2018.