Blog: The No Diagnosis Without Support resource - turning ambition into action
Sophia Hulbert is a Clinical Specialist Physiotherapist at Cornwall Partnership NHS Foundation Trust and worked on developing this resource.
Through her work she sees first-hand how important the period following diagnosis can be in shaping a person's experience of living well with Parkinson's.
In my clinical practice, I hear a wide range of experiences of receiving a diagnosis. For some, diagnosis brings relief at finally having an explanation for their symptoms. For others, it can be a difficult and uncertain time, accompanied by fear, anxiety and many unanswered questions.
Despite these different experiences, a common theme is the need for greater information, support and guidance to help people adjust to their diagnosis and navigate this important stage of their Parkinson’s journey.
The 2025 UK Parkinson’s Audit found that only 60% of people surveyed felt they were given enough information about Parkinson’s when they were diagnosed.
How, then, can we ensure that a Parkinson’s diagnosis is accompanied by the support people need?
This question is central to Parkinson’s UK Excellence Network's No diagnosis without support: Optimal pathway for people newly diagnosed with Parkinson's.
The first year following diagnosis represents an important opportunity to help people understand Parkinson’s, develop knowledge and confidence, identify their individual needs and establish connections with appropriate sources of support.
Getting this right early can:
- help people feel informed and empowered
- support positive health behaviours
- establish relationships with services and communities that can provide ongoing support.
However, achieving this consistently requires more than individual health professionals working within the services available to them. It requires a system-wide approach, underpinned by a long-term, person-centred vision in which people with Parkinson’s are informed and supported to navigate their journey alongside a coordinated, multidisciplinary network of care and support.
This is the rationale behind the pathway tool and its accompanying supporting guidance.
The aim is to outline what good support could look like following diagnosis and throughout the first year, providing a pragmatic, realistic and achievable model of care for services to work towards.
From campaign ambition to a practical framework
Healthcare services are operating within significant pressures, with constraints on both time and resources. This framework is therefore not intended to suggest that every service should create something new or deliver an identical pathway.
Instead, it is designed to help services recognise what they are already doing well, identify opportunities for improvement and make effective use of the resources, expertise and partnerships already available.
The framework aims to support services to address questions that are fundamental to developing effective Parkinson’s services:
- What should a Parkinson’s service have in place?
- How should different professionals work together?
- How can people be connected with rehabilitation, self-management and community support early enough to make a difference?
- How can support be proactive, rather than something people only receive when difficulties become established?
Five pathways, one connected approach
The resource describes five complementary pathways that healthcare services should aim to develop as part of a comprehensive model of care following diagnosis.
The intention is not to prescribe one identical model for every NHS organisation. Services differ in their resources, geography and local communities, and the guidance recognises this variation.
Instead, it provides an aspirational framework and practical starting point for local service development, establishing a shared ambition for what good support should look like while allowing services to develop approaches that are appropriate to their local context.
The 5 pathways cover different but complementary aspects of care:
- specialist consultant care
- Parkinson’s nurse support
- specialist multidisciplinary care
- multidisciplinary group-led support for self-management
- Parkinson’s UK and voluntary, community and social enterprise support.
Together, these pathways form a connected network of support, helping ensure that people with Parkinson’s and those close to them can access a range of services and expertise that can respond flexibly to individual needs.
For me, the connections between these pathways are as important as the individual components.
Developed from evidence, experience and best practice
The resource brings together learning from a bespoke national scoping exercise, research evidence, national guidance, clinical expertise, lived experience and examples of existing practice.
The supporting evidence review draws on guidance and policy from across the UK, alongside research into specialist Parkinson’s care, multidisciplinary rehabilitation, self-management, integrated care and partnerships between NHS and voluntary-sector organisations.
This combination is important. Evidence can help us understand what is likely to be effective; national guidance provides a framework for good practice; clinical experience helps us understand what is practical and achievable; and people with Parkinson’s provide essential insight into what care means in the context of their everyday lives.
From ambition to implementation
One of the most important purposes of this resource is to help move the conversation from “What should happen?” to “How can we make it happen?”.
NHS organisations and Parkinson’s services can use the pathway as a starting point to consider their current provision. Not every service will be starting from the same position, and not every service will be able to implement every element immediately. The purpose of this resource however is to provide a shared direction of travel that services can use to recognise strengths, identify opportunities for improvement and develop support that is appropriate to their local context.
This is what turning No Diagnosis Without Support into action means.
It means moving beyond the moment of diagnosis and developing pathways that connect people with the right expertise, rehabilitation, information, self-management support and community connections from the beginning.
Explore No diagnosis without support: Optimal pathway for people newly diagnosed with Parkinson's.
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