Chamber and committees

There has been ongoing communication between the Government and Kindred over the last weeks. The Scottish Government currently provides £64,000 annually through the Children, Young People and Families Early Intervention Fund to support the infrastructure of the organisation awarded through open and transparent competition.

Officials from Corra Foundation, the administrators of this fund are working alongside Scottish Government officials with Kindred to support them to establish a way forward.

Kindred is also a delivery partner in the Let’s Talk ASN Service, receiving £30k of the total £100k grant from Scottish Government until March 2018.

Information on vacancies for consultants with a specialty of clinical radiology is published by ISD Scotland and is available at the following web link:-

https://www.isdscotland.org/Health-Topics/Workforce/Publications/2017-03-07/Consultant_Vacancies_D2016.xls

Information on consultant vacancies outwith NHSScotland is not held centrally.

The Scottish Government is aware of disruptions in the supply chain for some commonly-used generic medicines. This is not a Scotland-only issue, but is experienced across the UK.

The NHS Prescribing Advisers Network routinely monitors and reports weekly on such disruptions across all Health Boards, so that action can be taken locally to advise GPs and other prescribers of clinically appropriate alternatives where this may be necessary to support continuity of care.

Within the NHS there is absolutely no assumption that mothers expecting a disabled child will want to terminate the pregnancy.

The Scottish Fetal Anomaly Screening Programme aims to ensure that women and couples are provided with high quality information so that they can make an informed choice about their screening options and pregnancy choices.

(a) i) The Scottish Learning Disabilities Observatory (SLDO) are one of the key strategic partners of the Scottish Government and are core funded through the Keys to Life Learning Disabilities strategy. Within their work plan, SLDO has investigated the fall in termination rates in Down syndrome pregnancies in Scotland, the most common additional physical health needs that adults with Down syndrome experience, and the impact of age and gender on these and survival rate of infants and children born with Down syndrome in Scotland, and their health needs/reasons for hospital admissions in childhood/youth compared with people without Down syndrome

There have been no applications for research projects on Down’s Syndrome submitted to, or funded by, the Scottish Government’s Chief Scientist Office in the last year.

ii) Screening for Down’s Syndrome is the responsibility of local Health Boards. Funding for this forms part of the NHS financial allocation for each Board.

b) Down's Syndrome Scotland (DSS) are one of the key national delivery partners of the Keys to Life, Scotland's national Learning Disabilities strategy. The Scottish Government have provided £225,000 of fund to DSS in 2016-17 and £264,000 in 2017-18. We have invested this money to support core DSS functions as well as for project related activity. Part of this funding has also been used to support DSS in hosting next year's World Down Syndrome Congress, which will take place in Glasgow from 25-27 July 2018.

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.

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.

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 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.

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