Chamber and committees

The Scottish Government is committed to improving the lives of people with learning disabilities through the Keys to Life strategic outcomes.

Down's Syndrome Scotland (DSS) is one of our key national delivery partners on our learning disability strategy. As Scotland’s only charity to work specifically with people with Down’s syndrome and their families, the Scottish Government core funds DSS. During 2016-17 we funded DSS’s Achieving Better Communication programme, which provides information and support to parents and activities for children to develop speech, language and communication skills that can be continued in the home and school environment. We have also funded DSS’s parent hub and programme. This project will strengthen the support DSS offers parents through its existing parental workshop programme by delivering online learning materials and publications free of charge. This modular online programme will make it easier for parents to access information and support when it suits them. The programme complements the personal support offered by DSS through its Family Support Service.

We are supporting DSS to host next year’s World Down Syndrome Congress, which will take place in Glasgow between 25 and 27 July 2018. Held every three years, the congress gathers together the global community interested in Down's syndrome and facilitates networking and the sharing of experience and best practice, and gives people with Down’s syndrome a platform to have their voices heard. More than 1,300 are expected to attend the event. In anticipation of the congress we have funded the development of a commissioner project, the purpose of which is to recruit 24 adults with Down's syndrome who will act as leaders and facilitators (or commissioners) or volunteers at the congress.

Non-invasive Prenatal Testing (NIPT) in the national screening programme will not be used to reveal non-medical features of the fetus, such as sex.

The introduction of this new test raises some difficult issues that need to be carefully considered. That is why the UK National Screening Committee has recommended that NIPT should be introduced as part of an evaluative roll out. This means that the introduction of NIPT can be monitored at each stage of roll out and any changes to the pathway and screening processes can be made quickly and effectively.

The UK National Screening Committee which advises Ministers and the NHS in all four UK countries about all aspects of screening, commissioned the Nuffield Council on Bioethics to produce a report considering the ethical values of recent and potential future scientific developments in Non-invasive Prenatal Testing (NIPT). The report was published on the 1 March 2017 and concluded that women and couples should be offered NIPT, but only within an environment that enables them to make autonomous, informed choices. Any change to the existing screening programme in Scotland will take the findings of the Nuffield Report into consideration. The report can be found here: http://nuffieldbioethics.org/project/non-invasive-prenatal-testing/findings

The Scottish Government is fully committed to ensuring that pregnant women in Scotland have access to high quality, safe and effective screening services and the Scottish Screening Committee is now looking at the use of NIPT as an additional screening test for Down’s syndrome in Scotland.

Ministers have not met with Premaitha Heath or any other biotech firm that develop Non-invasive Prenatal Tests in the past 12 months.

All pregnant women in Scotland are already offered a screening test for Down’s syndrome. If the screening test shows that the chance of having a baby with Down’s is high, women then have the option of having an invasive diagnostic test. The proposed change recommended by the UK National Screening Committee (UKNSC) is for Non-Invasive Prenatal Testing (NIPT) to be offered to women who are deemed at higher risk following the current primary screen. NIPT is not diagnostic and an invasive diagnostic test will still be required to receive a definitive diagnosis.

For women who choose to have NIPT, this will add in an extra step in the screening programme. The impact of this, and the choices women make at different points in the pathway, is something that the UKNSC hope to gain a better understanding of through further research. A recommendation has therefore been made to evaluate the introduction of NIPT to Down’s syndrome screening. This will include scientific, ethical and user input to better understand the impact on women, their partners and the screening programme around the offer of NIPT or invasive testing following screening.

The Scottish Government is fully committed to ensuring that pregnant women in Scotland have access to high quality, safe and effective screening services and the Scottish Screening Committee is now looking at the use of NIPT as an additional screening test for Down’s syndrome in Scotland.

The Equality Act 2010 states that it is unlawful for a service provider to discriminate against a disabled person by direct or indirect discrimination, discrimination arising from a disability, failure to make reasonable adjustments, harassment, discrimination by association, victimisation or discriminatory advertisements. This legislation would prohibit discriminatory access arrangements.

The Scottish Government has no plans to seek amendments to the Equality Act 2010.

There are also specific pieces of legislation related to the licensing of taxis and private hire cars as covered in the answer to S5W-11728 on 25 October 2017. Further, the Royal Botanic Garden, Edinburgh Regulations 1989 (SI 1989/830) exempt guide dogs from the general prohibition on taking animals into any of the four Royal Botanic Gardens.

All answers to written Parliamentary Questions are available on the Parliament's website, the search facility for which can be found at http://www.parliament.scot/parliamentarybusiness/28877.aspx

As a Government we are committed to promoting and protecting equality and human rights for disabled people enabling them to participate in and to make a full contribution to daily and public life, and we recognise the vital role which assistance dogs, including guide dogs, play in helping disabled people with practical tasks and in providing emotional support and independence.

Within Scotland taxis and private hire cars are licensed by Licensing Authorities (local authorities) under the Civic Government (Scotland) Act 1982. The licences of both taxis and private hire cars should contain a prescribed condition that requires the driver to a) permit assistance dogs (as defined by The Taxi Drivers’ Licences (Carrying of Guide Dogs and Hearing Dogs) (Scotland) Regulation 2003), to accompany the disabled person on any journey and, b) not to make an additional charge for this. However a Notice of Exemption can be issued by the local authority to the driver, if there are medical grounds as to why the driver should be exempted from complying with this condition. Such notices should be displayed clearly on the vehicle so that potential customers can see this.

Where a customer has a complaint this should be directed to the local Licensing Authority, made up of locally elected councillors, who can seek a review of the licence.

The number of terminations after 24 weeks gestation (gestations of 24 weeks and over) from 1990 is displayed in Table 1.

The number of terminations of pregnancy in some individual years is very small. Disclosure control measures have been applied because of the sensitive nature of the data and also to reduce the risk of disclosing personally identifiable information.

Table1. Number of terminations of pregnancy performed after 24 weeks gestation, in Scotland, from 1990 to 2016.

Source: Notifications (to the Chief Medical Officer for Scotland) of abortions performed under the Abortion Act 1967, ISD Scotland.
Ref: IR2017-01603

Notes

Abortions in Scotland are carried out under the terms of the Abortion Act 1967. Doctors have a legal requirement to notify the Chief Medical Officer in Scotland of all abortions carried out in Scotland. Section 37(1)(d) of the Human Fertilisation and Embryology Act 1990 refers to those abortions performed under Ground E of the Abortion Act, that is, there is substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.

ISD Statistical Disclosure Control Policy is available at the following link: http://www.isdscotland.org/About-ISD/Confidentiality/disclosure_protocol_v3.pdf.

The number of ground E abortions between 2005 and 2015 by (a) diagnosed condition and (b) gestational age is available in the following tables 1a and 1b.

Statistical disclosure control has been applied to both tables because of the sensitive nature of the data and to reduce the risk of disclosing personally identifiable information.

ISD Statistical Disclosure Control Policy is available at the following link: http://www.isdscotland.org/About-ISD/Confidentiality/disclosure_protocol_v3.pdf.

Table 1a

Number of ground E abortions by diagnosed condition (1); 2005 - 2015

 * Indicates values that have been suppressed due to the potential risk of disclosure.

Table 1b

Number of ground E abortions by gestational age; 2005 - 2015

Source: Notifications (to the Chief Medical Officer for Scotland) of abortions performed under the Abortion Act 1967, ISD Scotland

The Scottish Government notes the announcement by Abbott of the decision to include the Freestyle Libre flash glucose monitoring system on the England and Wales drug tariff. NHS Scotland has yet to receive official notification. Once received, NHS Scotland will follow the established due process for consideration of inclusion on the Scottish Drug Tariff.

The Scottish Diabetes Group are reviewing the evidence base on the clinical effectiveness of flash glucose monitors and will advise on its use within Scotland.