Chamber and committees

In June 2014 the Scottish Government published its rare disease implementation plan ‘It’s Not Rare to Have a Rare Disease’. The key aims of this plan include improvements to:

• Diagnosis – improving the accuracy and speed of diagnosis for patients.

• Data, Patient Registers and Research – gathering and making accessible patient data to relevant health professionals through robust and secure patient registers and continue to progress rare disease research.

• Patient Involvement and Patient Pathways – to develop and deliver person-centred rare disease services and to ensure everyone with a rare disease follows a clear, well defined care pathway for diagnosis, support, treatment and on-going care.

• Equity of Access – to develop educational and training programmes in rare disease for all relevant professionals, and provide access to information on rare diseases and support services.

The rare disease implementation plan can be found at the following link: http://www.gov.scot/Resource/0045/00455471.pdf.

The 2014 referendum was widely recognised as meeting the highest standards of fairness and transparency.

This Parliament voted yesterday to mandate the Scottish Government to take forward discussions with the UK Government on the details of an order under section 30 of the Scotland Act 1998 to ensure that the Scottish Parliament can legislate for a referendum to be held. As the First Minister has made clear, the Scottish Government will begin that process later this week.

We expect that anyone diagnosed with Lynch syndrome is informed of, and has access to the services appropriate to their clinical needs.

Sir Harry Burns has met with a range of stakeholder groups as part of the review to date and will continue to do so. A number of mental health clinicians have been in contact with Sir Harry with respect to the existing mental health targets and the impact they have made. With regard to wider engagement,
Sir Harry has made use of the findings from the national conversation on the future of health and social care. Sir Harry is also considering whether it is practicable and useful to seek views from the Our Voice panel.

The Detect Cancer Early Programme aims to improve cancer survival rates in Scotland to amongst the best in Europe, by diagnosing and treating cancer at the earliest stages, and has recently engaged with The Brain Tumour Charity to discuss the inclusion of their HeadSmart campaign materials as part of the ‘wee c’ strategy.

Through our £100million cancer strategy ‘Beating Cancer: Ambition and Action’ we are also committed to working in partnership with Teenage Cancer Trust to further develop their schools-based education and awareness programme.

To support GPs to refer and diagnose suspected cancers earlier we published updated Scottish Cancer Referral Guidelines. These guidelines, revised in 2014, are there to help GPs to identify those people who are most likely to have cancer, and who therefore require urgent assessment by a specialist. The guidelines include specific information to help GPs identify cancer in children and young adults.

We recognise the importance of ensuing that patient experience is captured and used in a meaningful way to influence the care that NHSScotland provides children and young people with cancer. The content and format of the next Scottish Cancer Patient Experience Survey will be considered following the learning and outcomes of the 2015/16 survey. Consideration will be given on how best to approach and learn of the experiences of cancer patients who are under the age of 16.

There are many examples of patient engagement where the young person’s experience has been captured and has influenced service design. The Managed Service Network for Children and Young People with Cancer recently called on the experience of a group of young cancer survivors to inform the development of an ePassport - a mobile application that will give them direct access to some of their personal health information. In April 2017 the Network will formally launch its Youth Advisory Forum which will provide a mechanism for consultation and engagement with young people nationally on wide ranging topics relevant to their experience through their cancer journey.

Only people with a confirmed diagnosis of cancer are eligible to be invited to participate in the Scottish Cancer Patient Experience Survey.

We welcome the Brain Tumour Charity's recent publication, which aims to inform and empower people with brain tumours. The Scottish Government is committed to ensuring that everyone who needs it can access clinically appropriate, safe and effective person-centred healthcare, treatment and support. Our £100 million cancer strategy, Beating Cancer: Ambition and Action, published last year aims to improve diagnosis and treatment for all cancers, including brain tumours.

We want to ensure that primary care staff are able to play a full role in the early detection of all cancers. The Scottish Referral Guidelines for suspected cancer were last updated in 2014 and are readily available for GPs. Also, through our 'wee c' cancer awareness campaign, we encourage anyone who is worried about any potential symptoms, or have noticed an unusual change in their body, to get checked.

Referral is always a clinical decision and on occasion emergency admissions are required. Our £100 million Scottish cancer strategy, Beating Cancer: Ambition and Action, published last year aims to improve diagnosis and treatment for all cancers, including brain tumours.

The Growing up in Scotland (GUS) survey collects some information about adverse experiences in childhood and about the health and wellbeing of children. GUS is a large-scale longitudinal research study tracking the lives of thousands of children and their families from birth through to the teenage years and beyond. GUS collects information about the following types of adverse experience: parental separation, childhood bereavement of a close family member, maternal health problems, parents’ alcohol and drug use, mental disorder in the family, domestic violence, parental imprisonment, parental job-loss, parents’ (dis)engagement with their child, and slapping a child. GUS also collects information which can be used to investigate the potential impacts of childhood adversity, including data on the health of children, health behaviours, and social, emotional and behavioural difficulties. The longitudinal nature of GUS means it is possible to look at the relationships between adverse experiences in childhood and later outcomes.

The Scottish Government, in conjunction with the Scottish ACE Hub, is currently considering options for obtaining data on the prevalence of adverse childhood experiences (ACEs). In order to make the best use of public funds, the current focus is on reviewing options to use existing national surveys to obtain this information. The Scottish Government will await the outcome of this review before considering the next steps.