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What are medical guidelines?

Medical guidelines (also known as clinical guidelines) are documents that recommend how healthcare professionals (HCPs) should care for people with specific conditions.

Medical guidelines can cover any aspect of a condition. For instance, they may include recommendations to HCPs about preventing, managing, diagnosing or treating a condition, as well as providing information and advice to patients. Any recommendation made should be based on the best available evidence, such as results from scientific research or expert testimony.

The National Institute for Health and Care Excellence (NICE) is a public organisation that develops medical guidelines for health and care in England. However, very few rare conditions have medical guidelines developed by NICE (you can view a list of all their published clinical guidelines here). Rare disease patient groups can therefore take it upon themselves to work with relevant stakeholders and develop their own medical guidelines. These do not have to follow NICE’s principles and processes, but it is advised that you use them as a basis if you want to ensure your guidelines are credible and accurate.

This e-learning portal course draws upon the information provided on the NICE website (specifically their ‘Developing NICE guidelines: the manual’ pages) to explain the basic process of writing medical guidelines. It then links to extra external information for those interested in finding out more.

Who are medical guidelines for?

Medical guidelines are typically used to advise healthcare professionals (HCPs) on the prevention, management, diagnosis and treatment of specific health conditions. HCPs should refer to guidelines when working with patients with a specific condition or in a particular circumstance/setting. They do not have to follow exactly what the guidelines say: instead, they should interpret the guidelines alongside additional resources, such as prescribing information for specific medicines, on a case-by-case basis and, using their own judgement, discuss the most appropriate action with patients and their families.

Medical guidelines can also be adapted for families, carers, schools and workplaces. Adapting the format and/or content of guidelines for these groups is particularly important if care and treatment takes place in the home, or if the condition could result in an emergency situation.

For instance, sickle cell anaemia is a rare condition that can lead to stroke during childhood. The Sickle Cell and Young Stroke Survivors (SCYSS) patient group developed a shorter leaflet-style version of their medical guidelines for parents to keep on their person in case of a stroke event. Importantly, the content was written using plain-English. Having understandable information to-hand and being able to pass it onto paramedics and emergency doctors can be crucial to patient survival. You can find out more about SCYSS’s guidelines in our case study here.

Why are medical guidelines important in rare diseases?

Healthcare professionals (HCPs) cannot be expected to know everything about every condition. Medical guidelines inform healthcare professionals about particular conditions and support them in making appropriate decisions with patients, regardless of whether they are faced with an unfamiliar set of symptoms or a diagnosed condition. Guidelines are therefore important in rare diseases which, due to their rarity, are likely to be unfamiliar to many HCPs.

Providing HCPs with medical guidelines can help to:

  • Improve the ‘patient journey’ referral pathway between healthcare professionals, such as GPs and specialists
  • Improve diagnosis rates and reduce misdiagnosis
  • Ensure consistent practice and procedures between service providers, such as hospitals in different locations
  • Improve the response in an emergency situation
  • Ensure patients receive the most appropriate treatments
  • Refer patients to your patient group for more information and support

Ultimately, this helps to improve patients’ quality of care and quality of life.