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 end of life care.
A ‘good death’ is not consistently achieved
- The majority of people describe the ideal death as peaceful, dignified, and not alone, with the opportunity to say goodbye to loved ones, requiring carers and families to be informed when the time is near and supported to be present.
- “We didn’t know what to expect”
- “I had thought the last weeks would be serene, but it was busy. And with all the machines you forget to give your wife a cuddle.”
- Communication, comfort and respect for choice are essential in making sure the person dying is involved in decisions about their care and feels they are in the right place at the right time.
- “She wasn’t shipped off to a hospital. It was peaceful and she went with dignity”
Experiences in clinical settings impacting physical and mental needs
- Dignity and respect when dying in hospital is reported as being significantly worse than elsewhere with environments described as ‘hostile to dying well’ with bright lights, noise, being busy and overcrowded.
- Some people felt that levels and options for care were sometimes promised, but then weren’t always able to be delivered within limited resources for example out of hours.
- “If you have an illness that is potentially terminal, you should be given information so you can have open conversations with your family. Having the conversations when admitted to hospice is too late.”
- “Not every hospital in London is able to provide face-to-face, 24-hour specialist access palliative care.”
Death is still not openly discussed
- Death remains a taboo subject in some communities, with some people expressing the need for more open conversations and for health and social care services to work together to provide continuity, choice and quality care at the end of life.
- People emphasised that the dying person should always remain at the centre of care.
- “His partner suffered terribly because of ‘chemotherapy at all costs’, when they both felt that she was dying and would have been open to discussion about other options.”
Late referrals and more information needed about palliative care
- Delays in professionals discussing death and dying meant palliative care is often considered too late, with many people reporting their loved ones only having received palliative care in the last days of their life.
- Many people had difficulty accessing healthcare professionals when not in hospital, especially in the community at home or a care home.
- Carers feel as though they take on the role of care co-ordinator and have let the person who died down if they could not access the care required, often due to lack of coordination between services and when out of hours.
- Some people are asked to make decisions about care without understanding the implications and would like further support and information – more honest conversations about what dying might look like and what to expect could help this.
- People would appreciate comprehensive end of life planning discussions, with but they are not always offered.
- “No support from palliative care was offered. Perhaps with this, information would have been clearer instead of a constant battle.”
- ‘It’s difficult to plan when you don’t know what to expect, so I didn’t complete an end of life form.”
Inclusion and inclusivity
- Some people feel they experience poorer care and are treated differently, with less compassion or are dismissed specifically related to their socio-economic background.
- “If they think you’ve come or they know you’ve come from somewhere like a council estate and you’re poor, their attitude is slightly less empathetic.”
- “People who lack power have things done to them and they’re not asked their opinion about things.”
Bereavement support can feel inaccessible
- Carers who had lost loved ones speak of distressing experiences after death, with counselling limited to online formats that felt impersonal or out of reach.
- Some people said that they needed someone independent to talk to, as family members were grieving too and highlighted a lack of practical support with everyday tasks such as finances, letters and bills which left them struggling to cope.
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:
These are the reports we have used in this summary of insights around end of life care. 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 local people with frailty who had used services at St Raphael’s Hospice Wellbeing Service, Urgent Community Response, St Helier Frailty Hub or Sutton Virtual Ward – 12 in-depth interviews
- 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 and Alzheimer’s Society looked at experiences of Dementia Pathway to inform the new local strategy – 19 patients, 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 insight from people and communities in 2023-24 submitted by Healthwatch organisations, voluntary and community sector organisations and others – 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 – engagement on the first phase of the NHS Joint Forward Plan identified through gap analysis from our people and communities review – 1,446 survey responses, 187 people in focus groups and one-to-one interviews
- National Survey of Bereaved People (VOICES): England (2015) – Department of Health commissioned collection of bereaved people’s views on the quality of care provided to a friend or relative in the last 3 months of life – 21,320 survey responses
- I WELCOME THE CONVERSATION (May 2024-24) – St Christopher’s Hospice in Sydenham looked at the topic of assisted dying as part of a broader discussion of death – interviews were had with 50 people whose loved ones had recently passed away at the hospice
- Time to care: findings from a nationally representative survey of experiences at the end of life in England and Wales – Marie Curie (2024) – a national cross-sectional post-bereavement survey about experiences and outcomes of dying, death, and bereavement – 1,179 survey responses