Chamber and committees

As part of our recovery from the Covid-19 pandemic, we are reassessing all our priorities to take a systematic, person-centred approach to planning and delivering health and social care services for the people of Scotland.

As we go through a process of realignment, we are taking time to ensure all our strategies are designed around the people using and delivering health and social care services and working together to improve health outcomes. This is even more pertinent for those living with a rare disease.While we expected to publish our Action Plan in the spring, the Rare Disease Action Plan will now be published once this work is complete to ensure maximum impact for the people who need it. This will result in a stronger, interlinked action plan that has a real impact for people with a rare disease.

We will continue to work with Scotland’s Rare Disease Implementation Board and other key partners to progress work that will improve the lives of people in Scotland living with rare diseases.

The Scottish Government has made £100,000 available for 2022-23 for tests-of-change to improve care co-ordination for people living with rare diseases.

Our Bridge to a Scottish Genomics Strategy project focused on expanding our genomics capabilities to support the diagnosis and treatment of rare and inherited disease. This was a key programme for government commitment for 2017-18, and £4.2 million was made available to NHS National Services Division over 2018-19, 2019-20 and 2020-21. A further extension of the Bridge was agreed in 202-/22 with a further £2.3 million made available.While the work of the Bridge has concluded, we have announced a significant increase in the genomics budget for 2022-23, rising to £6.2 million. This funding will support the sustainability of the successes from the Bridge as well as expanding our genomics capabilities further into cancer.

Furthermore, the Scottish Government has made available over £600,000 since 2019-20 to Public Health Scotland for the development of the Congenital Anomalies and Rare Diseases Registration and Information Service for Scotland (CARDRISS). A further £169,000 will be provided for 2022-23. The registry will become operational in this financial year. Discussions are ongoing with Public Health Scotland in expanding the registry’s functionality to support our wider endeavours for rare disease.

While the above sets out discreet funding to support those with a rare disease, many of our wider health priorities will equally contribute and deliver improved care for those living with a rare disease.

The audit trail here is a matter of public record. Advice was put to the then Cabinet Secretary Keith Brown on 20 August 2015, setting out CMAL’s identification of FMEL as the preferred bidder. Advice was also put to the then Minister for Transport and Islands on 7 October 2015, setting out risk associated with contract award in the absence of a guarantee, and mitigation that would be put in place.

The memos to Ministers mentioned have been in the public domain since 2019 and can be found at the following link: Ferguson Marine: key documents - 2015 - gov.scot (www.gov.scot)

There was no Ministerial direction in relation to the contract award and Ministers did not direct CMAL to enter into the contract. The contract was awarded by CMAL in its capacity as procuring authority following a robust procurement process.

While CMAL did express concerns about the absence of a refund guarantee, mitigations were agreed that were sufficient to assuage those concerns.

To access the scheme, all those aged 5-21 must be carrying a new card. A valid card must be presented to obtain free travel. Until a valid card is received applicants are required to pay the fare of any journeys required. Transport Scotland will not provide refunds for journeys made without a valid card.

The 2021-22 Programme for Government committed to developing plans to deliver free breakfasts to all primary and special school children, and start to pilot this provision. In order to effectively deliver this universal breakfast offer we need to better understand the extent of current breakfast provision across local authorities, including a mixed model of in-school, private and voluntary provision of breakfast, often delivered alongside early morning childcare. The priority this year will be to map existing breakfast provision and plan what delivery of a future breakfast offer should look like to best meet the needs of children and families in Scotland. It will be important to combine the provision of breakfast with the provision of childcare – where it is appropriate to do so – recognising the importance of accessible childcare at the beginning of the day to enable parents and carers to enter and sustain employment. To understand this need, we will ask our People Panel for school age childcare what children and families want and need from a breakfast offer combined with childcare and consider how this can best be delivered.

In December 2019 we published a Neurological Care and Support – a National Framework for Action . Over five years we will invest £4.5 million to implement the Framework’s commitments, including the development of sustainable workforce models.

The Scottish Shape of Training Transition Group makes recommendations to Ministers annually on training numbers across all medical specialties. The group undertakes an annual assessment of the medical trainee establishment and the factors influencing recruitment fill rates. This process aligns with medical workforce modelling and is intended to achieve a planned and sustainable medical workforce. In each year since 2016,100% of advertised Neurology posts have been filled, indicating that new trainee doctors already consider a career in neurology to be an attractive one.

Work is being taken forward on education and training opportunities for Clinical Nurse Specialists in Neurology (and MS specifically) by a group including Scottish Government, NHS Education Scotland, MS Clinical Nurse Specialists representatives and the NHS Centre for Sustainability Delivery. It will support Health Boards in recruiting and succession planning regarding these roles. The Scottish Government provides £2.4 million to enhance clinical nurse specialist provision and care.

Specific guidance on Reporting to Parents and Involving / Engaging Parent Councils during COVID–19 was published in November 2020. It states that “alternative methods and approaches to reporting will need to be used” in the current circumstances. Digital and online approaches are suggested as alternatives to in person meetings, and schools will be seeking to ensure engagement takes place such that all parents and carers can participate.

There is no specific guidance on meeting timings. Guidance emphasises that strong communications and collaboration between home and school remain key to ensure parents and carers can support their children and young people. Headteachers and managers will be working to ensure their setting or school continues to involve and engage parents and families .

Guidance states parents or carers may accompany children onto school premises where this is agreed and is considered necessary to support children and young people, including in relation to wellbeing, progress and behaviour.

In December 2019 we published "Neurological Care and Support - a National Framework for Action". Over 5 years we will invest £4.5 million to implement the Framework’s 17 commitments.

Some of these commitments aim to improve access to new medicines for people living with progressive forms of MS, such as our commitment to support the neurological research agenda by promoting the work of the Chief Scientist Office, third sector organisations’ research and Scottish neurological research networks; and encouraging opportunities for people with neurological conditions to become involved in research trials.

In September 2020, the Scottish Medicines Consortium (SMC) accepted siponimod (Mayzent®) for routine use in NHS Scotland. Mayzent® is the first oral Disease Modifying Therapy (DMT) for active secondary progressive MS. The SMC Horizon Scanning Team have also identified several DMT’s in development for the treatment of progressive forms of MS which are predicted to enter the UK market within the next 5 years.

The Scottish Government is committed to ensuring that all people living in Scotland with Multiple Sclerosis (MS) are able to access the best possible care and support, and benefit from healthcare services that are safe, effective and person-centred.

The NHS Recovery Plan, launched in August, sets out the Scottish Governments key headline ambitions and actions to be developed and delivered now and over the next 5 years, backed by more than £1 billion of investment. Scottish Health Boards are in the process of implementing their remobilisation plans for 2021-22, with an initial additional £80 million dedicated to supporting waiting times already provided this year.

We will publish a National Workforce Strategy by the end of the year, to further support the remobilisation and recovery of health and social care services and set out priorities for recruitment, training and retention. We anticipate that the Strategy will be used by workforce, service and financial planners from across Health and Social Care at all levels.

We are aware that the pandemic has impacted on waiting lists for neurology clinics and are currently implementing programmes to mitigate this situation. The Centre for Sustainable Delivery (CfSD) is working closely with Neurology services to support the adoption of Active Clinical Referral Triage (ACRT) and Discharge Patient Initiated Review (PIR) approaches within Neurology. Both ACRT and Discharge PIR support better access for patients based on clinical need and can be applied in various neurological conditions, including MS.

The recent Scottish MS Register report noted that despite the challenges presented by COVID-19 during 2020-21, 87% of newly diagnosed people received contact with an MS specialist nurse within 10 working days of diagnosis and over 99% of people were contacted within 10 working days of an MS nurse receiving the referral.

We have invested £1.4m over the past year, through our Neurological Care and Support Framework, into innovative projects which improve the care and support of people with neurological conditions. This includes over £300,000 on projects which improve the health and wellbeing of people with MS in Scotland, including better integrated care and supported self-management.

I refer the member to the answer to question S6W-03702 on 29 October 2021. All answers to written Parliamentary Questions are available on the Parliament's website, the search facility for which can be found at https://www.parliament.scot/chamber-and-committees/written-questions-and-answers .