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Rare Resources: Scotland

Rare Resources is an ambitious project to offer high-quality guides about rare, genetic and undiagnosed conditions across the UK. The campaign is a response to the gaps in information often reported by people starting their journey with a rare, genetic or undiagnosed condition

Download the Rare Resources Guide for Families.PDF/4 MB

Rare Resources: Starting your journey

Rare Resources is an ambitious project to offer high-quality guides about rare, genetic and undiagnosed conditions across the UK. The campaign is a response to the gaps in information often reported by people starting their journey with a rare, genetic or undiagnosed condition

Everyone affected by rare, genetic and undiagnosed conditions can benefit from the Rare Resources library. The guides are especially useful to people just starting their condition journey and their loved ones, as well as healthcare professionals who are seeking further information about these conditions.

All materials that are part of Rare Resources were proudly developed in collaboration with people affected by genetic, rare and undiagnosed conditions, as well as support organisations and healthcare professionals.

We currently have Rare Resources guides for Scotland and Wales.

Rare Resources Scotland

 

The Scotland Rare Resources information directory for people living with rare conditions and their families contains links and contact details for a variety of sources of support available in Scotland. This includes carer support services, education and mental health.

Rare Resources Scotland also includes a guide and toolkit of awareness raising resources for health professionals involved in the care of people with a rare condition in Scotland. It may also be useful for social care professionals, education providers and family support workers. This guide includes:

  • Information to help professionals better understand the needs of people with rare conditions.
  • Information on how to assist families to access appropriate care, information and support.
  • Links to reliable sources of information and support.
  • Links to training resources for health professionals.

View our guide and toolkit for for healthcare professionals here

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Top tips

Don’t be afraid to say ‘I don’t know’

It is not possible to know about every rare condition. Patients understand this and value honesty. Be honest about your level of knowledge and demonstrate that you are prepared to learn or ask others for help. This can help build trust and a positive relationship with your patient.

Listen

People with rare conditions often report that they are not listened to or that their concerns are dismissed. People with rare conditions are typically experts in their (or their child’s) condition and they are best placed to communicate how the condition affects them/their child and what their needs are.

Signpost to support groups

Wherever possible, assist families to access information and support from condition specific support organisations. Genetic Alliance UK can help you identify support organisations for your patients.

Communicate

Dealing with health and social care professionals can be a daunting experience. Help to build a positive relationship by communicating considerately and clearly; introduce yourself and explain your role in your patients care, avoid using jargon and consider using aids (such as diagrams or online videos) to describe complicated things. People can find appointments overwhelming and stressful, it is important to show empathy and understanding.

Coordinate care

Many patients with a rare condition require complex care from a range of different health professionals. It is in their best interest, and the best interest of those involved in their care, to ensure care is properly coordinated. Wherever possible, coordinate with other care providers and assist patients in obtaining a dedicated care coordinator and do not assume this is a job for someone else to do.

Consider the family

Having a child with a rare condition can significantly affect the lives of other members of the family. Consider the needs of parent carers and siblings in your interactions with the family – ask how they are coping or if there is any support they need. Where appropriate, signpost family members to sources of practical, emotional and financial support.