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Developing our Clinically-led Strategic Plan for South West London – insight from local people and communities about long term conditions

This report details the insight about long term conditions from people and communities to inform the NHS South West London Clinically-Led Strategic Plan. This is an opportunity to design a sustainable, effective health and care system that meets the needs of our communities now and in the future. 

NHS South West London are developing a Clinically-Led Strategic Plan.  The plan will be underpinned by high-quality evidence, analysis and insight, and shaped through insight and engagement with patients, the public and partners across the system. This is an opportunity to design a sustainable, effective health and care system that meets the needs of our communities now and in the future.   

This will include looking at:     

  • understanding and predicting the future health needs of our local population in South West London    
  • our clinical outcomes in South West London compared to national best practice    
  • local operational data that shows we are performing for patients    
  • workforce intelligence to support frontline staff to reshape services and work in new ways    
  • insights from the experience of patients, local people and communities who want more control to manage their own health.   

To help inform clinically-led discussions, the South West London ICB community engagement team provided an overview of insights gathered from people and communities on the following areas:   

1. Frailty

2. Maternity and neonatal

3. Mental health

4. Planned specialist care (end-to-end care from outpatients to intervention)

5. Long term conditions

6. End of life care

A series of clinically-led workshops are bringing together partners to discuss each area, between October and early 2026. This insight on what matters most for communities was presented at the beginning of each specialist workshop.   

What we did     

The South West London community engagement team undertook a desk top literature review of insight for each of the specialist clinical areas each workshop is focusing on, pulling out key themes from multiple insight sources to show ‘what matters most to people and communities’.      

We started by mapping sources of local existing insight for each area, drawing on reports from partners locally and relevant regional and national reports.  A nominated member of the team was responsible for coding and theming the insight for each topic – pulling out the consistent and frequent themes.  All the reports we analysed are included in the reference section of ‘Sources of insight’ for each clinical area. 

  

Insight from people and communities

What matters most to people and communities

Themes we have heard about long-term conditions from our people and communities: 

People feel alone and unsupported

  • Living with a long-term condition can be isolating – people can feel unsupported and abandoned and feel like they are left to deal with their condition alone
    • “I have a painful and disabling long-term condition and I’ve thought about suicide because of the lack of
      support, help and adequate treatment”
  • Regular contact, community groups and peer mentors were described as lifelines for wellbeing and confidence. Group activities like yoga, walking clubs, and cooking classes were particularly important.
    • “I didn’t realise how much walking with others could help—not just for fitness, but for feeling connected.”
  • Ability to get out felt as essential to help with feelings of isolation – transport and mobility support can help people be more independent.
  • Some people reported that symptoms were dismissed as simply “mental health,” rather than being taken seriously, even when they felt that their mental health was stable.

Information, communication and signposting

  • Clear, accessible information for patients and carers was seen as essential, particularly for those managing diabetes, dementia or multiple conditions.
  • Many people were unsure where to turn when their condition worsened or services changed.
  • Feedback called for better signposting, plain-language materials and information in different languages and formats.
  • Those people with more than one long term condition can find advice can be contradicting and information and navigation through services and advice becomes even more confusing
  • Sharing information more effectively between professionals and services would also help people feel informed and supported in managing their condition day-to-day.
    • “A lot of the current resources available to support long term conditions tend not to take notice that those with multiple conditions may need an entirely different type of support, or, as in my case, the resources on offer are not suitable due to their treatments for different said conditions contradict each other.” 
    • “Every leaflet feels written for someone who is already healthy”

Access, continuity of care and joining up services

  • People want joined-up, seamless services with improved information sharing between teams – fragmented services and lack of continuity left many feeling unsupported. Ideally people wanted to see the same GP who understood their condition and history.
    • “My child felt happier with the interventions he was receiving when he knew the person administering them.”
    • “Medical records should be shared across hospitals and GPs, along with results.”
  • Long waits for different services, including IAPT and mental health services made people worried about their condition worsening and the impact it could have on their mental and physical health
  • Some people expressed a need for more support around pain management, impact on their mental health and monitoring of their conditions
    • “The lack of joined up care makes managing my health incredibly difficult, as every condition is treated as an isolated problem, rather than in a more holistic manner.”

Physical and mental wellbeing support

  • Need for holistic and preventative approach to multiple health conditions – people wanted more recognition for the inter-relationship between pain, fatigue and mental health and flagged the need for more joined-up support.
    • “Not enough help with pain management and mental health impacts.”
  • People wanted reassurance that when new interventions are recommended these take into account potential interactions with existing treatments and medications
    • “The resources on offer are not suitable due to their treatments for different said conditions contradict each other.”
  • Delays and long waits for hospital appointments, diagnostics and mental health services can lead to worsening health conditions and emotional distress
  • Desire for confidence-building, exercise, and community wellbeing groups.
    • “Group activities at affordable prices were helpful.”

Digital inclusion, exclusion and self-help tools

  • Digital self-help and monitoring tools were welcomed by some, such as dementia apps or online
    webinars that reduce travel. However, digital exclusion remains a major concern.
  • Digital exclusion is often raised with support wanted to improve digital literacy and access to
    technology so that all can benefit from digital health tools
  • Face-to-face appointments are important for isolated people with long-term conditions.
    • “People feel “done to”, that they must use these apps – sometimes a person might spend a
      full day on apps or technology and not speak to a human. Are we causing more harm than good? Where’s the balance?”
    • “I use three apps as under the care of three different specialist healthcare teams across London.”
    • “Having a long term medical condition is often very isolating and if all the support provided is a review appointment every 6 months or every year it’s vital that there should be an option to attend in person.”

Partnership and self-management

  • People want to be treated as expert partners in their care – listened to, involved in decisions,
    and supported to manage their conditions confidently.
  • Shared decision-making and personalised care plans were not consistently in place but
    welcomed and appreciated where they were in place and working well.
  • Respondents called for more prevention, education, and early community-based support to
    avoid crisis care and A&E attendance.
  • More patient information is wanted about self-care and tips to use in day-to-day life
    (diet, exercise etc) to increase physical and mental wellbeing.
    • “Empower people to have knowledge and confidence to self-manage.”
    • “A&E for long term conditions feels risky and firefighting. Better community access via GP and
      specialist nurses in community would be best way to avoid repeat A&E visits.”

Sources of insight

These are the reports we have used in this summary of insights on long-term conditions. We have used local and national reports from our South West London insight bank drawn together from engagement work across South West London including from our Healthwatch and VCSE partners:

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