As part of the review of community-based specialist palliative care services in North West London, the review team were keen to learn more about the views of public and professional audiences on current services, ways of working and priorities for improvement and change.
The team subsequently developed a series of six surveys designed to do this, specifically these were:
- A long public survey with additional questions for members of the public with experience of using community-based specialist palliative care services.
- A short public survey for members of the public.
- A survey aimed at community and voluntary sector.
- A survey of staff working within North West London community-based specialist palliative care.
- A survey of staff who work with North West London community-based specialist palliative care teams to deliver care to patients (i.e. other staff).
- A survey of staff working within North West London community-based specialist palliative care in acute settings
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The surveys were launched between November 2021 and March 2022 and the summary results that follow are based on responses received up to early May 2022 (apart from the long public survey, on which results collation began in Mid-April 2022).
The results and extensive comments provided through the surveys will be considered as part of the review in conjunction with the feedback collected through the other forms of public engagement.
A summary of the six surveys is provided below and a presentation on the results, created for the review steering group is available here.
Process, methodology and statistical reliability
All of the surveys were designed to protect the identity of respondents, allowing them to provide an overall satisfaction rating for each question asked as well as the opportunity to provide constructive commentary.
The survey was set up in Jot form allowing participants to submit their responses online at a convenient time. However, paper copies were available for those who did not have access to the Internet or preferred to complete a paper copy. These were subsequently entered manually into Jot form by a member of the review team.
The surveys were promoted through email, events, meetings and via the review website.
A total of 188 respondents took part in the surveys. Whilst overall statistical reliability for the surveys is good, those with base samples of under 30 respondents (i.e. the short public survey, the survey of staff working within NWL community-based specialist palliative care services and the survey of staff working within NWL community-based specialist palliative care in acute settings) are unlikely to be fully representative of that particular group. However, these surveys still provide useful insights and recommendations for improvement for consideration. Also, please note
- Some results to survey questions do not add up to 100% due to computer rounding;
- The base samples of questions answered in a survey may vary as questions were not mandatory; and
- Some respondents gave more than one answer to the questions asked.
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- 53 responses received, of which 70% came from women and just over 20% from Black, Black British, Indian or British Asian respondents.
47% of respondents advised that they had recent experience of community-based palliative care.
- 61% of respondents advised that professionals who were providing care and support at home definitely or to some extent worked well together. Conversely, a significant minority (28%), said they did not work well together.
- 66% agreed that they were kept informed of the patients care and condition, a significant 26% didn’t feel they had enough time with staff to ask questions and discuss the individuals condition and care.
- 55% of respondents said it was very easy or easy to contact the community-based specialist palliative care team involved in their care. 45% of respondents advised it was difficult or very difficult to contact the community-based specialist palliative care team. The most important care and support received were: pain relief; 24/7 support /access to services and where to contact in an emergency; and better communication with patient carers and family.
- 32% thought that the news that they were dying had not been broken in a caring or sensitive way to the patient. By contrast, 72% of respondents agreed that the specialist palliative care service tried to maintain comfort in the last few days of life.
Key areas for improvement and attention
- 58% rated their care in the last 3 months of their life as poor to very poor.
- 54% disagreed that the services responded straight away when trying to contact for something urgent in the evening or at the weekend.
- 45% found it difficult to contact the community-based specialist palliative care team involved in their care.
- 42% did not you feel they were given the relevant information on what to expect and for the actions to take as your loved one deteriorated and care after death.
- 35% disagreed the reasons that the team addressed their calls were addressed in a timely manner.
- 35% disagreed that they and their family got as much help and support from the community-based specialist palliative care services as they needed when caring for them.
- 33% disagreed that the individual’s emotional needs were considered and supported.
- 32% disagreed that after they died they were supported in a sensitive manner.
- 32% of respondents did not have an advanced care plan.
- 32% felt that the person who broke the news to your loved one did not break it in a sensitive and caring way.
- 32% felt that they did not have enough choice where they died.
- 32% felt that there was not enough help with care, such as giving medicine and helping the individual finding a comfortable position in bed.
- 32% disagreed that they received sufficient help and support from social care services (i.e. support with personal care, social worker input, carers assessment).
Highest community-based specialist palliative care satisfaction ratings
- 79% agreed that they understood the information provided by healthcare professionals in the last days of life.
- 79% agreed their loved one was comfortable in the last few days of life (either at home, hospice, care home).
- 74% felt that their symptoms were relieved well following calling the specialist palliative care team for advice on symptom management.
- 74% felt that their loved ones died in the right place.
- 70% rated community-based specialist palliative care service(s) received from good to excellent.
- 72% agreed that the community specialist palliative care team/ service involved in the care tried and maintained their loved one’s comfort in the last few days of life.
- 68% agreed that there was enough help available to meet loved one’s personal care needs such as toileting needs in last days of life.
- 68% were satisfied with their involvement in decisions about their care.
- 66% felt they were kept informed on the loved one’s condition and care.
- 65% agreed that they had a supportive relationship with the SPC care team/services.
- 65% agreed that the community-based specialist palliative care team addressed their queries in a timely manner.
- 13 responses, of which 85% came from women, again around 20% Asian/British Asian or Black/Black British, split fairly evenly across boroughs.
- The points made were comparable to those made in the long survey. Differences centred around what we need to consider and change to make community-based specialist palliative care and end of life services more equitable with more information, language issues and cultural and beliefs awareness being the top answers.
- Answers on why a larger proportion of people from BAME communities or certain faith groups do not use community-based specialist palliative care and end of life services pointed to: greater reliance on family care, lack of awareness of services (or language challenges), difficulties in talking about EOL; families desiring the same ethnic or faith background in carers.
- To make care more equitable, the most popular answers (by far) were: language issues, more information and cultural/beliefs awareness.
- 47 respondents, predominantly older (50% 65+, 22% 56-65), female (72%), white, heterosexual, Christian (37%) or no religion (35%) and the majority (63%) lived in Ealing.
- 70% without recent experience of a community-based palliative care service for themselves or someone close to them.
- Respondents rated the following specialist palliative care services as the most important to them; pain relief is available 24/7 (91%), able to contact someone 24/7 (83%) and services are available 24/7 365 days a year (83%)
Of those with recent experience of a community-based palliative care service for themselves or someone close to them, the following felt they or their loved one was treated with dignity and respect by the community specialist palliative care professionals involved in their care: 31% always, 24% most of the time, 17% some of the time.
- Significant majorities of respondents (70%-90%+) stated it was important that someone takes into account their culture and identity (e.g. religion, cultural background, sexual identity etc.) when considering a range of palliative care services (e.g. examination, treatment, general interaction). However, 98% of respondents would not forgo any aspects of medical care on these grounds.
- 18 Respondents, 17 of which are medical/clinical staff members.
- Staff would showcase the following key things in their current services: multidisciplinary team approach; responsiveness; 24/7 support; and their service being patient centred.
- The biggest challenges staff face working in a community-based specialist palliative care team/service in NW London are seen as: staffing (shortages and skilled staff); increased caseloads and the complexity of cases; and funding gaps.
- Barriers to more integrated services include: unrealistic expectations (numbers of patients seen or fixing longer term problems such as housing, mental health etc.); complicated referrals processes; lack of appropriate teams/services; and joined up communication.
- 78% thought the public did not have a good understanding of the role of community-based specialist palliative care teams/services, and their/colleague’s roles within that. Suggestions for improving this included hospitals explaining to families the role of the palliative care team in the community and liaising better with these teams; and a truly integrated service, including training.
- Key findings for new model of care development included: more community engagement/outreach; increased funding and improving collaborative working.
- Key comments on how to make services more accessible for diverse communities and more equitable and sustainable included: involving patients and service users from diverse communities in decision making; greater funding and improved infrastructure and environments for staff and patients; Better broader support services for patients; and building links with other spiritual/faith groups (e.g. in hospices).
- 44% of staff disagreed that they were provided with enough support to deliver special palliative care and end of life care work and others felt that although there has been more attention staff well-being during Covid this needs to be embedded in everyday practice.
- Staff provided a number of suggestions to improve well –being through complex case conferencing, peer/clinical supervision, easier access to counselling services and 24 hours’ rapid response service.
- However, the majority of staff (72%) felt that their workplace had conducted regular service reviews and that they had the opportunity to provide feedback.
- 43 respondents from wide variety of roles.
- 40% did not think it was clear to the patients, families and carers they were supporting, what the role of the community-based specialist palliative care teams and services are, although 44% did believe this was clear. Further comments pointed to: patient difficulty in understanding who to contact when more than one team was involved; clarity over when palliative care is ‘taking over’ from district nursing; clarity from GPs on what the palliative service can provide/support; and the need for better information for patients that breaks this information down.
- A majority of staff found it easy (47%) or very easy (21%) to contact the community-based specialist palliative care teams/services in their area.
- A majority found the reasons for this contact addressed in a timely manner (56%) or sometimes addressed in a timely manner (37%) and a majority also found the patients were seen in a timely manner by community-based specialist palliative care teams/services (67%).
- 70% of staff thought that the community specialist palliative care teams work well with them to provide care for the patient and their families and carers.
- 69% of respondents felt they had the right skills and abilities to work with people who have palliative and end of life care and support needs.
- 43% thought they or their organisation had access to training and educational input from your local community-based specialist palliative care team/service, although 40% did not, with comments suggesting further training around difficult conversations; managing patient and family expectations and 38% disagreed that they had been given the opportunity to have the training.
- 14 respondents, vast majority female and white.
- 86% thought it was not clear to hospital staff what the role of the community specialist palliative care team/services is/are.43% thought the referral process to community-based specialist palliative care to be satisfactory and 21% sometimes satisfactory (with comments suggesting it may be less easy for non-specialist services to follow), Issues were also raised regarding the length of the referral form, who should complete the referral and variations of referral requirements across services.
- Similarly, 43% and 21% (sometimes) said they have regular satisfactory communication with the community team (comments cited some issues with being copied on hospital correspondence and awareness of out of hours contact details).
- 29% felt that patients they referred to community specialist palliative care teams/services were seen in a timely manner, although 36% did not (comments suggested this may be down to the fact services are stretched with large caseloads and it was noted that they are responsive where urgent review is required).
- There were various suggestions for improvements to community specialist palliative care teams/services including improving links to in-patient teams (outside of palliative care); continuing to communicate and liaise with the acute trust when patients are admitted; providing a single point of access for CSPC and accompanying improved public information on contacts; improving education around difference between SPC and end of life care and more outpatient clinics for care planning and joint reviews