Genetic Alliance UK in Scotland:

Patient Engagement

Join our Patient Panel by contacting


This work is focused on representing the interests, experiences and views of people affected by genetic disorders to the Scottish Government and NHS Scotland commissioners.  The complexity and severity of many genetic diseases creates considerable barriers for some patients when trying to express their opinions to decision makers.  Therefore, Genetic Alliance UK represents the views of patients, their families and their carers to present as full a picture as possible of the reality of living with often rare, long term and chronic genetic disorders.  My post was funded by the Scottish Government as part of the Review of Genetics in relation to healthcare in Scotland chaired by Professor Kenneth Calman in 2006.  For full details see:

This review asked for provision to be made for the creation of a patient network that could comment on NHS service design and delivery.  By consulting with patients and their families the Government hopes that NHS Scotland will continue into a modern, flexible service that can adapt to the great variety of individual patients needs.

What does this mean to me?

Patient engagement, also known as patient / service user involvement is simply a commitment by organizations such as the NHS, to talk to patients, listen to their views and use this information to improve patient experience in general.  The Scottish Government developed a policy called Patient Focus Public Involvement in 2000.  This policy stated that the NHS would strive to become more patient-focused and identified the following key aims:

  • A service where people are respected, treated as individuals and involved in their own care.
  • A service where individuals, groups and communities are involved in improving the quality of care, in influencing priorities and in planning services.
  • A service designed for and involving users.

In May 2010, The Scottish Government developed "The Healthcare Quality Strategy for NHS Scotland". This strategy has further acknowledged the importance of patient involvement in developing services in Scotland. The Quality Strategy is about three things:

  • It is about putting people at the heart of our NHS. It will mean that our NHS will listen to peoples' views, gather information about their perceptions and personal experience of care and use that information to further improve care.
  • It is about building on the values of the people working in and with NHSScotland and their commitment to providing the best possible care and advice compassionately and reliably by making the right thing easier to do for every person, every time.
  • It is about making measurable improvement in the aspects of quality of care that patients, their families and carers and those providing healthcare services see as really important.

To find out more about the Healthcare Quality Strategy for NHS Scotland, click here


What will Genetic Alliance UK in Scotland be doing?

We will be creating a Virtual Patient Panel. Anyone who is affected by a genetic condition or cares for another person who is, can join the virtual patient panel. The panel is mainly an online network of patients who have agreed to be contacted to share their views on health related issues and changes in policy and practice in Scotland.   You can join by contacting  .  However, you don't need to have access to a computer or have an email address to join the virtual panel. To join you can contact Natalie by phone or by post, and the Genetic Alliance UK Patient Panel can keep up correspondence with you by these means.

Genetic Alliance UK in Scotland have produced a new patient leaflet encouraging patients living in Scotland to get involve with the work that Genetic Alliance UK is doing.   Your Genes, Your Experiences.