Chamber and committees

The Scottish Government recognises that there are particular challenges around raising awareness amongst clinicians of the many varied rare diseases. These are not issues unique to Scotland and in 2009 the European Union recommended that each EU state have in place a rare diseases plan or strategy by the end of 2013. This led to the four nations of the UK coming together to publish the UK Strategy for Rare Diseases in November 2013. As part of this joint project, Scotland published the Implementation Plan ‘It’s Not Rare to Have a Rare Disease’ in June 2014.

One of the aims of the Scottish plan is to secure rapid and effective translations of advances in the understanding of rare disease into clinical care by creating appropriate infrastructure, care pathways and clinical competences. This will include education and training programmes that enable health and social care professionals to better identify rare diseases in order to help deliver faster diagnosis and access to treatment pathways for patients.

Through this plan, we are working together with partners to improve the outcomes and support for people with rare diseases. The Scottish Government cancer strategy ‘Beating Cancer: Ambition and Action’ complements the actions of the rare disease plan through its focus on early detection, diagnosis and treatment for all forms of cancer, including rare cancers.

Registers of Scotland aim to complete all first registrations within the six month standard, however this is not always possible due to the complex information that is needed to be created when creating a new title. Registers of Scotland has been working over the last few years to improve its speed of service and this is reflected in the increased proportion of applications being completed within 20 days. Registers of Scotland’s new digital services that will be introduced over the next two years will further reduce the time taken to complete first registrations.

On point (a) -

Plans are underway to build a secure adolescent inpatient unit in Scotland. This will benefit the small number of young people who require this specialist level of care and who cannot be treated in the community.

We recognise that there are a small number of young people who require specialist secure care, and we are persuaded that there is a need to build an inpatient facility for the whole of Scotland. This is being taken forward by NHS Ayrshire and Arran.

On point (b) -

Clinical nurse specialists make a valued contribution to delivering services and supporting patients and families who require specialist care. The Scottish Government has invested £2.5 million annually in the Specialist Nursing and Care Fund since 2015. NHS Boards across Scotland have benefited from the investment and have used the funding to enhance specialist nursing and care in ways that reflect local needs. At May 2017, reports from NHS Boards show that specialist nursing capacity had been enhanced through the additional investment by 31.35 whole time equivalents (WTE) and these roles are supporting and caring for patients and families affected by a wide range of conditions, across the life spectrum and across hospital and community settings.

In addition, and as part of this wider effort, the Scottish Government has fulfilled its pledge to double the number of Motor Neurone Disease (MND) clinical nurse specialists and ensure that they are paid from public funds.

On 10 November, we were pleased to publish a comprehensive Inpatient Needs Assessment Report which sets out the need for a specialist inpatient service for those with learning disability and/or autism and mental health conditions:

http://www.gov.scot/Publications/2017/11/2477

We are happy to accept, in principle, the report’s main recommendation that a national LD CAMHS inpatient unit for Scotland should be established, subject to initial feasibility and planning processes. This is a significant step forward in ensuring that children and young people with learning disabilities are able to access appropriate highly specialist inpatient support in Scotland

We will now work closely with NHS National Services Scotland on developing the proposal further.

Antenatal Results and Choices (ARC) Awards from the Scottish Government in the last 10 years

The funding provided to ARC by the Scottish Government in this period was through the Section 16b grants scheme and was to assist ARC in their aims, including their specialised support services.

The organisation ceased to be named Support After Termination for Abnormality in 1993.

The latest figures show that there were (a) 58,232 3 year olds and (b) 59,741 4 year olds in Scotland as at 30 June 2016. Table 1 shows the number in each local authority.

Table 1; Number of 3 and 4 year olds by council area, Scotland, Mid-2016.

Source; Mid-year population estimates 2016

Our consultation paper 'A Healthier Future - Action and Ambitions on Diet, Activity and Healthy Weight' published on 26 Ocotber makes clear that we strongly support this.

Following on from the publication the UK Government ‘ Childhood Obesity: A Plan for Action’ in summer 2016, I wrote on 19 August to the UK Government on this matter, but they made no commitment to reconsider their earlier decision

I have, therefore, written again seeking a discussion and offering our collaboration in going forward. The recent remarks from the Secretary of State for Health Jeremy Hunt MP informing the House of Commons Health Select Committee that the prohibition of advertising of unhealthy foods before 9 p.m. is now under active consideration is welcome. However, as broadcast advertising is currently reserved, I am urging the UK Government to prioritise such action which would have significant benefits for Scotland and the rest of the UK. Alternatively, I am requesting that these powers are devolved to the Scottish Parliament.

The Scottish Expert Advisory Panel on the Collaborative Economy will have their final meeting on 30 November at which they will consider their conclusions and recommendations. The panel will report to Scottish Ministers by the end of 2017 and the report is due to be published in early 2018.

While the Scottish Government sets strategic policies for the NHS in Scotland, it is for each NHS Board to decide best how to deliver high quality, safe and sustainable services to meet the needs of its population. We fully expect NHS Boards to plan their workforce to ensure that enough professional staff and facilities are available to provide the best possible care for patients in a variety of settings.

Under this Government, the number of consultants with a specialty of clinical radiology in NHSScotland have increased by 41.9 per cent to 317.2 Whole Time Equivalent. We have also increased radiology training places by 20 per cent in the last four years.

Cancer waiting times data for the second quarter of 2017 shows that 94.8% of cancer patients across Scotland received treatment within 31 days of a decision to treat, with the average wait being only 6 days. The Scottish Government are actively engaging NHS Boards where there are challenges to sustained delivery against the 62-day standard.

Our new Ministerial Cancer Performance Delivery Group will focus on driving forward improvements in waiting times for diagnosis and treatment for cancer patients. Backed by an additional £1 million investment to roll-out new technology, this would allow consultants to report on diagnostic scans taken anywhere in the country, helping to address short-falls in capacity in some areas.

We are also taking action to ensure we have enough radiologists for the future, working with NHS Boards and staff side organisations, including the Royal College of Radiologists, to make sure we have the right numbers in the right place conducting the right procedures.

In September 2017 we announced an additional £3 million to increase the number of radiology trainees in Scotland by at least fifty over the next five years. This was in the context of our wider package of measures to improve waiting times for diagnosis and treatment of cancer patients in Scotland.

Furthermore, the National Radiology Implementation Programme will see radiology information systems connected across every NHS Board in Scotland over the next 1-2 years. The programme will rely on NHS Boards working together in a joined-up service approach to maximise available services.