Rare diseases action plan - progress report: child rights and wellbeing impact assessment

Conclusion

6. As a result of the evidence gathered and analysed against all UNCRC requirements, what is the potential overall impact of this proposal on children’s rights?

Applicable answer(s): Positive

7. If you have identified a positive impact on children’s rights, please describe below how the proposal will protect, respect, and fulfil children’s rights in Scotland.

Children and young people living with a rare condition, and their families, will benefit from a shorter diagnostic odyssey, healthcare professionals having greater awareness of rare conditions, improved co-ordination of care, and improved access to specialist care.

Article 2: Non-discrimination: our work seeks to reduce healthcare inequalities that impact children with a disability and/or long term health condition.

Article 3: Best interests of the child: our work seeks to support better co-ordinated care provided by healthcare professionals who will have greater awareness of rare conditions through the resources that we create or signpost.

Article 6: Life, survival and development: our priorities are to enable faster diagnosis, increased awareness among healthcare professionals, better co-ordination of care and increased access to specialist care for everyone living with a rare condition. Rare conditions can be present at birth, and more prompt diagnosis and care can improve children’s lives.

Article 17: Access to information: our work seeks to support more resources being available to people with a rare condition, their families and carers. Having a landing page on NHS Inform is the first instance of making public-facing information available about rare conditions.

Article 23: Children with a disability: our priorities are to enable faster diagnosis, increased awareness among healthcare professionals, better co-ordination of care and increased access to specialist care for everyone living with a rare condition. All of these enable higher quality care for children with a disability caused by a rare condition.

Article 24: Health and health services: our work aims to raise awareness of rare conditions among healthcare professionals, so that they can diagnose and treat rare conditions more promptly and effectively. Improved co-ordination of care and access to specialist care will also improve the standards of care for people with rare conditions.

8. If a negative impact has been identified please describe below. Is there a risk this could potentially amount to an incompatibility?

No negative impacts have been identified.

Mitigation Record

What options have been considered to modify the proposal in order to mitigate negative impact or potential incompatibility issues?

Please summarise mitigation actions taken below

Issue or risk Identified per article/ Optional Protocol

N/A

Action Taken/ To Be Taken

N/A

Date action to be taken or was taken

N/A

As a result of the evidence gathered and analysed against all wellbeing indicators, will the proposal contribute to the wellbeing of children and young people in Scotland?

Applicable answer: yes

If yes, please provide and explanation below:

Wellbeing Indicator: Healthy

Children and young people living with a rare condition, and their families, will benefit from a shorter diagnostic odyssey, healthcare professionals having greater awareness of rare conditions, improved co-ordination of care, and improved access to specialist care.

Faster diagnosis allows for earlier and more targeted intervention, lessening the disease burden borne by children with a rare condition and their families; third sector support and guidance can also be sought once a diagnosis is known. Greater co-ordination of care allows multidisciplinary teams to work together in ways that cut down on the time taken to travel to multiple appointments, and improved access to specialist care opens up a wider range of options for targeted intervention. Underpinning all of this is increased awareness of rare conditions among healthcare professionals, who are then better equipped to spot and diagnose rare conditions and able to refer children on to the correct care pathways.

9. How will you communicate to children and young people the impact that the proposal will have on their rights? (Guidance Section 3.2, page 27)

We will work with key stakeholders, including the Genetic Alliance UK, to ensure children and young people are informed about the Progress Report and impacts on them. The CRWIA will also be published on gov.scot alongside the progress report so will be in the public domain for those wishing to read it. In so far as possible the CRWIA has been written in accessible language so those reading it can understand its content and the potential impact identified in the assessment.