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
These are the top themes we have heard from people and communities about frailty.
Staying healthy and maintaining independence
- Staying physically and mentally well, maintaining independence and preventing them from becoming even more frail.
- Support to stay independent including access to rehabilitation services, support at home and personalised care plans.
- Support for carers and regular contact with health professionals or others going through similar experiences, for example, frailty specific activities and help with confidence and independence at home and in the community
- People are resigned to chronic conditions like arthritis and back pain, believing that little more can be done, discouraging them to seek help.
Feeling unheard and misunderstood
- Older people can often think that their symptoms might be overlooked, or their needs dismissed as ‘being senile’, having dementia or that increasing pain levels might not be fully understood or dismissed
“There is a tendency for women – especially older women – to have their symptoms dismissed as hysteria, imagination, not as bad as they say it is”
“I feel like I don’t get taken seriously as doctors are so quick to write off a concern as part of my existing issues and not investigate properly”
- Bias and discrimination are cited as common barriers to accessing care and having symptoms overlooked by health professionals – this can be due to a lack of understanding of cultural or religious needs which can lead to miscommunication and can exacerbate an existing lack of trust
“When I called the surgery, the receptionist was dismissive and impatient with me. She interrupted me multiple times, clearly frustrated with my accent and the way I spoke.”
“I was hospitalised during Ramadan, they did not respect my religion at all.”
Experiences of dementia care
- Longer waiting times for referrals can be particularly stressful for those with dementia and their carers
- A lack of GP follow up or advanced care planning after diagnosis can leave patients and their families feeling excluded.
- Need for regular reassessment of care needs and more personalised co-produced planning with patients.
“Everyone with dementia needs to be treated as an individual, not a group.”
“Having a choice of services and support for dementia and not just being stuck with one thing that might not work.”
Experiences during hospital stay
- People can sometimes be afraid of going into hospital, associating them with a loss of independence and a fear of not returning home
- Continuity of care and wanting to see the same staff consistently, supported by shared care records, that save time and avoid them having to repeatedly explain their medical history
- Communication from different hospital departments about health needs can be confusing
“Sometimes letters from hospital departments can be confusing and when people have more than one health condition, they are not always sure where they are going for what.”
- Attending multiple appointments on different days is challenging due to mobility issues and using local transport.
Discharge processes and returning home
- If there is poor communication, difficulty or uncertainty when being sent home from hospital, this can leave people feeling vulnerable, particularly for those living with dementia.
- Concerns about returning home after a hospital stay include worrying about falling, not having enough support at home, not having the right equipment, medication or information to look after themselves or their loved one.
Gaps between hospital and home
- People want us to bridge gaps in the provision of care when leaving hospital, with intermediate care being provided between discharge to the time that patients are seen by a community frailty consultant.
- Responsive, well-coordinated care is appreciated citing rapid visits from district nurses and timely access to medication and assessments as examples of services working efficiently.“Services in the community can be more complicated to navigate than when they are on a single hospital site.”
- Services in the community needed to be more joined-up, with better communication between services suggesting a single accessible point of contact that isn’t solely digital. “I would like to see words put into action, good support when leaving hospital and less variability in the quality of home help”
Sources of insight
These are the reports we have used in this summary of insights around frailty. We have used reports from our South West London insight bank drawn together from engagement work across South West London including from our Healthwatch and VCSE partners:
- People’s experiences of services for frailty (April 2025) – Healthwatch Sutton investigated the experiences of people living with frailty who had used the Maximising Independence Service, St Raphael’s Hospice Wellbeing Service, Urgent Community Response, St Helier Frailty Hub or the Sutton Virtual Ward health services – 12 in-depth interviews with Sutton residents
- Patient and unpaid carer engagement across south west London community services (September 2025) – the six Healthwatches in South West London gathered feedback across a variety of adult and paediatric community services as part of the paused SWL programme – 481 responses
- Dementia Pathway Experiences in Croydon, the views and experiences of Croydon residents final report (June 2023) – Healthwatch Croydon worked with Alzheimer’s Society to gather insight into the use of Dementia Pathway Experiences to inform the new dementia strategy for Croydon – 19 patients who have dementia, 41 carers and 20 friends and family responses
- Grants programmes in winter 2023/24, winter 2024/25 and spring 2025 – partnering with VCSE sector to gather insight from communities disproportionately impacted by health inequalities and most likely to experience the worst health outcomes
- Grant-funded engagement on racism (October 2025) – Kinston Race Equality Council report which includes key patient experience insights for global majority communities including stereo-typing, discrimination and religious and cultural needs not being respected – 877 people through a range of engagement approaches
- 10 year health plan engagement (January 2025) – around the NHS 10-year plan 3 shifts and key themes from local analysis of engagement reports in 2023/24 – 80 community and voluntary sector leaders
- Insight from local people and communities in South West London updated in 2024 (March 2025) – summarises the insight from people and communities in 2023-24 submitted by Healthwatch organisations, voluntary and community sector organisations, NHS Trusts, local councils, and Place-based public and patient engagement teams – examining 300 reports from various sources
- Our five-year plan for the NHS in South West London. A Joint forward plan 2023-2028 (July 2023) – patient and public insights against the priorities in the plan based on the engagement activities in April to May 2023.
- Joint Forward Plan – Our engagement with people and communities, April to May 2023 (June 2023) – engagement on the first phase of the NHS Joint Forward Plan published in March 2023, focusing on populations and geographies identified through the gap analysis of our insight from people and communities review – 1,446 responses to the survey, 187 people in focus groups and one-to-one interviews