Rare Disease Scotland: progress report

6. Challenges And Next Steps

The Challenges and next steps highlighted in the Second Progress Report from the UK Rare Disease Policy Board are also pertinent to Scotland, most notably the EU Exit and especially the effect that this will have on the European Reference Networks ( ERNs) and access to healthcare systems across Europe. The Scottish Government will be working closely with colleagues in the rest of the UK on this matter.

Whilst the wider national issues are of great importance, there are some areas within Scotland which are challenging and which the Rare Disease Implementation Oversight Group intend to focus on over the next two years.

6.1 Information Sharing between computer systems

The digital aspect of sharing information between systems in primary and secondary care is a challenge for the rare disease implementation plan in Scotland. Currently the systems are not linked up and therefore ensuring that key information is shared between primary and secondary care is often left to manual processes. As reported in section 3.2, the Scottish Government, in partnership with key stakeholders, is developing a new, integrated Digital Health and Social Care Strategy that will build on achievements to date and set out future development and priorities, this is a Scotland-wide problem for all health conditions and will need to be considered by Scottish Ministers and NHS Health Boards.

6.2 Social Care

In drafting this report, the Rare Disease Implementation Oversight Group ( RDIOG) acknowledged that the group is missing oversight of the implementation plan in the social care setting. Accordingly, in the next few months the group will consider the commitments in the implementation plan and look to how Integrated Joint Boards should be included in the group/plan.

6.3 Communication

The Rare Disease Implementation Oversight Group acknowledge that they have not been actively communicating progress with the Rare Disease community. When the implementation plan was published, there was an expectation from the community that change would happen quickly, and while there has been some communication on major achievements, like the SGP, progress in other areas has not been communicated. As a result, a communications plan has been drafted and work will begin in winter 2017 to increase awareness of rare diseases and to report on the progress of the RDIOG. This will include updating websites, using social media and having a presence at relevant health and social care events.

6.4 Genomics

While work has only recently started in Scotland on the SGP, it has become clear that genomics will become a major focus in health in years to come. Progress is occurring at unprecedented speed and the Scottish Government and NHS Scotland need to consider very quickly how information will be stored and how it can be used routinely. It will also need to consider training a large number of staff in this area. This will be a significant piece of work.

The Scottish Government, with the support of the Chief Medical Officer have requested that the Scottish Science Advisory Council prepare a report entitled “Development of Genomic Medicine in Scotland” to help inform their future activities.

The proposed key areas to be included are:

• The current capabilities for human genomics in Scotland and developments elsewhere.
• The potential to build to existing assets in Scotland.
• The opportunities for, and benefits to, the NHS, research and the life sciences sectors in Scotland arising from further development, including in technology, skills and partnerships.
• The areas where investments may be needed in order to realise these opportunities and benefits.

The report is expected in mid 2018 and will help inform evidence for a future strategy for Genomics in Scotland.

6.5 NHS Inform

NHS Inform is the Scottish equivalent of NHS Choices. The system was redesigned and re-launched in 2017, and unfortunately several of the pages that referred to rare disease were lost or corrupted. Work started in August 2017 to review these pages and consider how the resource could be better used to be of more use for people with rare diseases.

6.6 NHS Education training and resources

The Scottish Implementation Plan “It’s Not Rare to Have a Rare Disease” states that NHS Education Scotland will consider what information, training and resources may be deliverable to staff, with the Knowledge Network being offered as one possibility. The Knowledge Network has become vast and staff at NES are looking to streamline the information available. However, the work being undertaken by RARE BestPractice and the decision support tools will help to address this. Other educational resources have not been considered and this will form part of the work going forward for the next phase of implementing the plan.