NICE Releases New Neurological Rehabilitation Guidelines

NICE’s New Push for Case Management in Neurorehabilitation — and How Lived-Experience Research Made a Difference

A major advance has just been published by NICE (15 October 2025). Their guidelines on Rehabilitation for chronic neurological disorders including acquired brain injury (NG252) includes strong new recommendations about case management / single point of contact for people needing neurorehabilitation. These are not incremental tweaks, but structural changes with real potential to change how people experience health, social care, and rehabilitation over time.

I’m pleased to say some of my own research contributed directly to the evidence base supporting the need for changes and education of the health and social care workforce. These are the two references:

Norman, Alyson; Holloway, Mark; Odumuyiwa, Tolu; Kennedy, Machaela; Forrest, Hannah; Suffield, Freya; Dicks, Hilary; Accepting what we do not know: A need to improve professional understanding of brain Injury in the UK.; Health & social care in the community; 2020; vol. 28 (no. 6); 2037-2049 [Norman’s paper on peoples’ lived experiences (cited in NICE 2025 consultation on community rehabilitation)]

Odumuyiwa, T., Kennedy, M., Norman, A., Holloway, M., Suffield, F., Forrest, H. and Dicks, H. (2019) ‘Improving Access to Social Care Services Following Acquired Brain Injury: A Needs Analysis’, Journal of Long-Term Care, 0(2019), p. 164–175. (cited in NICE 2025 consultation on community rehabilitation;)]

What NICE Recommends: Case Management & Single Point of Contact

Here are the key points that NICE now says should happen, especially around case management, and why these are important:

• A single point of contact across organisational boundaries. Everyone needing neurorehabilitation should have someone (or some resource/unit) they can turn to, not just within one team or service, but across health, social care, community services, and voluntary support.
  
  
• This role is scaled to level of need:

1. Key contact: for those largely self-managing.
2. Key worker: for people needing more support.
3. Specialist Case Manager: for people with complex needs requiring sustained coordination across settings and over time.

• It is recognised that this is not just about naming someone, but about integrating them into the rehabilitation plan, giving them capacity and authority (or at least linkage) across sectors, so care is coherent rather than patchy.
• Implementation will take time. NICE acknowledges that full system change may take years, but establishing the expectation, building capacity, and making case management a core component is now policy.
• Case management is linked to holistic needs assessments, better signposting/follow-up, managing “invisible” symptoms, and ensuring continuity (for example when people’s needs change, or they move between services).
• The guideline also emphasises that the workforce (health, social care, voluntary) needs to be educated/trained so that professionals know what symptoms to look for, when to refer, and how to work across sectors. Without that, naming a case manager is of limited value.

How My Research Was Used

Here’s how our work (and related studies) contributed to NICE’s decision-making, particularly around case management, the need for workforce training and associated themes:

Key studies & themes

• Among the academic papers underpinning NICE’s case management recommendation, two were led by BABICM (British Association of Brain Injury Case Managers) members (e.g. Clark-Wilson et al. 2016; Clark-Wilson & Holloway. 2015); four, in total, came from BABICM membership. Our lived experience research (e.g. Norman et al. 2020 “Accepting what we do not know…”) and Odumuyiwa et al. 2019 (“Improving Access to Social Care Services…”) were both included in NICE’s evidence reviews.
• In the NICE evidence review “Clinical case management” (Draft for Consultation, April 2025) these papers featured in multiple sub-themes. Some examples:
  • B3.3: Understanding the importance of “invisible” symptoms — our papers provided evidence here (participants described fatigue, emotional/psychological strain, fluctuating or non-visible effects).
  • B4.1: Focusing only on physical injuries and impairments — our work helped show that this is insufficient, that non-physical dimensions matter.
  • B5.1 Adequate follow-up and signposting — our work showed that people often aren’t given ongoing support or told how to re-access services when needs change.
    
    
• The Odumuyiwa et al. paper was used in subthemes such as:
• B1.1: Availability of specialist centres/services
  • B1.3: Limited capacity of services
  • B3.1: Education for non-specialist healthcare professionals
  • B4.3: The role of family/friends in rehabilitation
  • B5.2: Auxiliary / non-rehab services (e.g. benefits, housing, advice)
    
    
• These contributions provided qualitative evidence that reinforced quantitative data, giving a richer picture of what people with neurological conditions experience. For example, how gaps in coordination or in knowledge among professionals make the journey difficult, unpredictable, or emotionally taxing. These insights grounded the case management recommendation: not just that people need someone to coordinate, but why such a role is needed, including for invisible symptoms, follow-ups, changing needs, and cross-sector navigation.

Why This Matters & What It Could Look Like in Practice

These recommendations are more than policy window-dressing. If realised, they could change many people’s journeys. Some reflections on what could change, what obstacles there are, and what to watch out for.

Potential benefits

1. More coherent support: Having a named person who knows the whole person, not just a slice (e.g. physical therapy), helps people avoid falling through gaps. For example, if social care eligibility changes, or if fatigue or cognition needs have worsened but previous service doesn’t pick it up.
2. Access when needs change: With case management, people are more likely to get re-assessment or get referred back if, say, they develop new symptoms or their environment or personal circumstances change.
3. Better navigation / less burden on patient/family: Often people and carers are left trying to figure out what services exist, who to talk to, what paperwork, benefits, housing etc. A case manager or key contact can help reduce duplications, delays, frustrations.
4. Holistic care: Invisible symptoms (fatigue, emotional, cognitive, communication) will receive better attention, not treated as “afterthoughts” or “extras” but core parts of the rehabilitation plan.
5. Greater equity: Where services are patchy, local variability can leave many underserved. This recommendation sets a national standard / expectation, which could reduce variations in access.
6. Support for carers/families: Recognising their role, helping them understand services, giving them support if they are part of someone’s network, not leaving them to struggle in isolation.

Challenges & Things to Watch

• Workforce capacity / training: Implementing case management requires enough skilled people, often with cross-sector knowledge, which is uneven now. Training non-specialists, resourcing key workers/case managers is essential.
• Organisational boundaries and siloed funding: Health, social care, third sector, voluntary sector often have different funding, different leadership, different priorities. Case managers will need levers to work across those boundaries.
• Clarity of roles: Who is the single point of contact? How much authority/responsibility do they have? Will they be able to refer / liaise / advocate? These details matter.
• Sustainability and funding: National guidelines are one thing; making sure local Integrated Care Boards or equivalent bodies commit funding, adjust job roles, monitor outcomes is another. NICE itself acknowledges that full implementation may take up to a decade.
• Maintaining person-centredness: Must ensure the voice of the person with the neurological condition (and their family / support network) remains central. Case management shouldn’t become bureaucratic or tokenistic.

What Next? Recommendations & Research Gaps

From both the NICE guidelines and our experience, here are areas for action and further research:

• Track implementation: which areas are putting in place specialist case managers or key workers, how quickly, with what training, resources, and see what outcomes follow (patient experience, functional outcomes, quality of life).
• Study cost-effectiveness: understanding the resource implications of investing in more case management roles, versus savings from avoided problems (hospital readmissions, delayed declines, etc.).
• Investigate how invisible symptoms are best identified and managed (e.g. fatigue, cognition, emotional wellbeing), perhaps via new tools or screening protocols.
• Look into how technology might support the case management / key contact role (for example, shared digital records, patient-held rehab passports, apps to track symptoms or flags for re-assessment).
• Understand what kinds of support are needed for families, friends, and wider networks (what works, what doesn’t) when people are rehabilitating in the community over long periods.

A Closing Thought

The NICE guideline’s elevation of case management / single point of contact to a central structural recommendation is a win for individuals living with neurological conditions, and for those of us who study lived experience and service gaps. It shifts expectations: not just what rehabilitation services should include, but how they should be organised: flexible, responsive, continuous, and person-centred.

For those of us who have contributed research, it feels encouraging to see qualitative lived-experience evidence taken seriously in policy, not just quantitative studies or trials. But the test will be in the implementation.

If policy makers, commissioners, practitioners, and case managers take this seriously and follow through, millions of people could experience smoother, more dignified, more effective rehabilitation journeys. And as these changes spread, there will be new opportunities for researchers to monitor, evaluate, and provide feedback about what’s working and what needs adjusting.

Written by Dr Alyson Norman, UKABIF Trustee, Co chair of Anchorpoint, Associate Head of Teaching and Learning; Associate Professor of Clinical and Health Psychology; Specialist in Brain injury and Visible difference