🧑‍🤝‍🧑 Taking Part in Your Own Care: Shared Decision-Making, Self-Management & Advocacy in the NHS

Living with a long-term condition like aspergillosis can be complicated. You may see hospital specialists, your GP, nurses, pharmacists, and sometimes social services too. The NHS is working hard to make sure patients aren’t just “done to,” but are real partners in decisions about their own health.

This approach is called shared decision-making and supported self-management.

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🌱 Where did this idea come from?

• It’s a core part of the NHS Long Term Plan (2019, refreshed 2023/24).

• The aim: give patients a stronger voice, improve care outside hospital, and reduce emergency admissions.

• It grew out of earlier “shared care” models, where GPs and hospitals split prescribing or monitoring tasks. Now the focus is much wider: putting patients at the centre of their own care.

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💡 What does it mean?

Shared decision-making

• You and your clinicians decide together.

• Doctors explain the evidence, options, risks, and benefits.

• You share what matters most to you — daily life, family, work, fears, and preferences.

• Example: deciding whether to start biologics, taper steroids, or continue antifungal therapy.

Self-management

• You are supported to handle your condition day-to-day.

• This includes recognising early warning signs, having an action plan, knowing when to call for help, and using tools like the NHS App or support groups.

• Education, pulmonary rehab, peer groups, and digital health apps can all help.

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🚧 Barriers patients may face

Even though the NHS wants all patients involved in their care, challenges exist:

• Short appointments that leave little time for discussion.

• Medical jargon that is hard to follow.

• Confidence gaps, especially when you feel unwell.

• Health inequalities (literacy, language, digital access).

• Fragmented care, where GP and hospital don’t always join up.

• Information overload — too much general advice, not enough personalised guidance.

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🧑‍🤝‍🧑 Can you have an advocate?

Yes. You don’t have to face this alone. Advocacy can come from:

• Specialist nurses at the National Aspergillosis Centre (NAC) or your local hospital.

• Family or friends — you are always entitled to bring someone to appointments.

• Peer groups like NAC CARES, where other patients share practical advice.

• PALS (Patient Advice and Liaison Service) in every NHS trust.

• Healthwatch (local branches) or independent advocacy charities.

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🔎 Care Coordinators & Link Workers

These are newer NHS roles that help patients navigate complex care.

Care coordinators

• Support people with complex, long-term conditions.

• Help organise appointments, blood tests, and follow-up.

• Make sure GPs, hospitals, and community services talk to each other.

• Often based in Primary Care Networks (PCNs) or specialist hospital clinics.

Social prescribing link workers

• Focus on the non-medical side of health.

• Connect patients to local community support, peer groups, exercise schemes, benefits advice, or housing help.

• Anyone struggling with isolation, anxiety, or lifestyle issues can be referred.

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📋 Criteria for Accessing Care Coordinators & Link Workers

Care Coordinators – who qualifies?

• Patients with two or more long-term conditions, or one condition requiring complex management (e.g. aspergillosis with antifungals, steroids, biologics, adrenal monitoring).

• People on multiple medicines or with frequent hospital admissions.

• Patients needing help to coordinate care between GP, hospital, pharmacy, and community services.

• Prioritised for those at risk of “falling through the cracks” in the system.

Social Prescribing Link Workers – who qualifies?

• Any patient whose social or practical situation affects their health.

• Examples:

  • Feeling isolated or low in mood.

  • Struggling with benefits, housing, or finances.

  • Wanting help with lifestyle changes.

  • Needing connections to peer groups or local activities.

• Usually no strict medical criteria — referral is based on need.

How referrals usually happen

• GP or practice nurse refers after spotting a need.

• Hospital team (e.g. NAC or respiratory clinic) may suggest referral back to the GP/PCN.

• Some PCNs allow self-referral if the service is advertised locally.

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📊 How many coordinators are there?

• As of mid-2025, NHS England data shows:

  • Around 5,000–6,800 full-time equivalent care coordinators employed across Primary Care Networks.

  • Over 3,500 social prescribing link workers active across England.

• Numbers vary by area, and coverage is still expanding as ICSs and PCNs grow their teams.

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🧠 Why do people think care coordination is mostly mental health?

• Historically, most care coordinators were employed in mental health services, where patients often need joined-up support from psychiatry, GPs, housing, benefits, and social care.

• That’s why many people first hear the term “care coordinator” in relation to community mental health teams.

• But the NHS is now expanding care coordination into physical long-term conditions, including respiratory diseases like COPD, bronchiectasis, and aspergillosis.

• Access still varies by region — some areas prioritise cancer, frailty, or diabetes, while others are starting to include respiratory patients.

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🧑‍⚕️ Care Coordination: Mental Health vs Physical Health

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✅ What this means for aspergillosis patients

• If you have complex care needs (antifungal monitoring, biologics, steroid side-effects, adrenal insufficiency, other chronic conditions), you are likely to meet criteria for a care coordinator.

• If you are struggling with the social and emotional impact of illness (fatigue, isolation, money worries, lifestyle changes), you may benefit from a link worker.

• These roles are increasingly available in GP networks, though availability may differ locally.

• Ask both your hospital team and your GP practice what is available in your area.

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🔍 Questions to ask at your next appointment

• Could I be referred to a care coordinator to help manage my appointments and medicines?

• Is there a link worker who can support me with non-medical needs?

• What local services are available through my Primary Care Network or ICS?

• Who is responsible for updating my care plan?

• What support is there for my carer or family?

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💬 In summary:
Shared decision-making and self-management mean you are an active partner in your care. Aspergillosis is complex, but you don’t have to manage it alone. Between your hospital specialists, GP, advocates, and newer NHS roles like care coordinators and link workers, there is growing support available across the NHS to help you live better and feel more in control.