Project: Navigating the Maze

An online tool for successful patient advocacy in healthcare provision

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Project aim

The Navigating the Maze project aims to support patients and patient groups to take an active role in their healthcare and to enable people to influence the healthcare provision that they and their members receive.

The project will develop and support the use of an online and downloadable information resource, or map that will give patients, families, clinicians and support groups the information they need to advocate for themselves and for improved NHS services and treatments for their condition.


The structure of the four UK healthcare systems (England, Northern Ireland, Scotland and Wales) are complex, both in terms of the way in which services are organised and in terms of the planning, commissioning, regulatory and advisory processes that determine and impact on health service provision.

We know from speaking to our members that the terminology used can often be both baffling and alienating leaving people wondering how they can advocate for themselves, and who is responsible for areas of their care.

Patient support groups and voluntary organisations are often also at a loss as to how they can influence service provision to benefit the people that they represent. People affected by genetic and rare conditions and the often small, user-led support groups that work on their behalf, are particularly excluded and disadvantaged by the complexity of the system.

The Navigating the maze project aims to develop an accessible and practical tool to help patients, families and support groups to understand the four UK healthcare systems and enable them to access and influence the wider processes and organisations involved in the development of treatments and services.

This resource will be freely available and will identify and describe the different levels of health service provision and signpost users to organisations that regulate and advise on healthcare practice, research and development at a local, regional and national level, for example the Clinical Commissioning Groups (CCG’s) Health and Social Care Boards, Specialised Services Clinical Reference Groups (CRGs), and the National Institute for Health and Clinical Excellence (NICE). The resource will give details and tips about how to approach, and connect with these organisations, acting as a portal and providing links to further information.

The project is being delivered and produced by members of the Genetic Alliance UK policy, campaigns and communications team. Due to the wholesale changes taking place within the NHS in England we will be focusing on Scotland, Wales and Northern Ireland in the first instance and moving onto developing a resource for England by the middle of 2013.

We are already researching information about the structures, services, processes and organisations in each of the four devolved UK health systems (including UK-level systems) as well as developing a glossary of questions and issues that patients and/or patient organisations may come across when faced with a genetic or rare condition. We hope by developing a full list of scenarios or questions that they can inform the capture of information on all the relevant bodies and organisations. This is not proving a simple task and we will certainly be looking to our membership to help us ensure we are asking the right questions and not missing any vital pieces to this jigsaw.

We value your input and thoughts throughout this process and we will be contacting members in the near future to ask for your help with testing the questions we’ve developed. As the project develops we will also ask members about the early phases of the resource itself to ensure we are including information that is helpful for you and that is also understandable and easy to navigate.