Key findings from feedback received (November 2021 - March 2023)

As laid out in the Issues Paper, there are eight broad reasons why we need to improve the way we deliver our community-based specialist services to make sure everyone receives the same level of high-quality care, regardless of their circumstances. 

We have carried out an analysis of all the feedback received through the webinars, surveys, one to one conversations, meetings attended and literature reviews and grouped the feedback received against the eight broad reasons. 

To review the valuable learning and feedback received from previous reviews of palliative and end-of-life care services carried out in Brent, Hammersmith and Fulham, Kensington and Chelsea, and Westminster, and the further engagement activity carried out in Ealing, Harrow, Hillingdon and Hounslow.

In the previous review of community-based palliative care provision in in 2019 and 2020 we talked to people about community-based specialist palliative care services and heard what a crucial role the services play. The feedback confirmed that people value their local specialist services and would like to receive them as close to home as possible, and people with experience of these services are very positive about the care they have received. Local residents and stakeholders said they would like the NHS to reopen the Pembridge Palliative Care Unit in-patient beds following their temporary closure in October 2018 due to a lack of specialist care consultant cover and being unable to recruit due to the national shortage of trained personnel (see Section 1.2 Insight report and actions taken for further details).

We also heard that services need to be made available to more people 24 hours a day, availability of care needs to be improved during the out-of-hours periods (between 5pm and 9am) particularly, services need to be more inclusive and adaptable, offer more choice and more be more joined up. People told us it is important to improve access to these services so more people receive care and are supported to die in their preferred setting, whether this is at home, in a hospice, or in hospital. It is also important that people don’t have to travel too far to access services.

The feedback showed that people have different views on how we should make these improvements.  We want to build on the feedback and what we have learnt from it.

See the Palliative care services Independent review - full report Review of provision in Kensington & Chelsea, Hammersmith & Fulham and Westminster.

See the Palliative Care Services Public Engagement Report July 2020 In the boroughs of Brent, Hammersmith & Fulham, Kensington & Chelsea and Westminster.

In January 2020, Hillingdon Commissioning Group (HCCG) performed a review of End of Life Services looking at the views of general practitioners (GPs) and the lesbian, gay, bisexual, and transgender community (LGBT).

See the Review carried out on End of Life Services in Hillingdon in January 2020.

To bring services in line with national policy. Such as:

  1. The national Six Ambitions for Palliative and End of Life Car

  2. The NHS triple aim of improving access, quality and sustainability

  3. Ensure providers follow the National institute of Care and Excellence (NICE) guidelines for palliative and end-of-life care services.

  • We will utilise the learning and gaps in improvements taken from the borough and ICS level self-assessments against the six national ambitions for palliative and end of life care. 
  • Future community-based specialist palliative care services will need to align with national standards and guidelines.
  • This includes adhering to the national service specification for community-based specialist palliative care.

To meet patients’ changing needs arising from changes in the population. By 2040, the number of deaths within England and Wales is expected to rise by 130,000 each year. More than half of the additional deaths will be people aged 85 or older, so there will be an increased need for palliative and end-of-life care services.

  • We will need to take into account aging population with likely increased demand on community-based specialist palliative care.
  • The number of people living with dementia is increasing which brings increased complexity of care needs. 
  • The number of elderly people living on their own is increasing with no one to care for them. Often they can live away from their family leading to social isolation.
  • This includes support for the family and carer supporting them.

To reduce health inequalities and social exclusion, which act as a barrier to people receiving community-based specialist palliative care.

  • Review should look at ways of tackling the widening Health Inequalities for people who require palliative and end of life care and support service.
  • Attention should be given to isolated people, those with family outside the country or in different regions, elderly couples that are physically or mentally unable to care for each other, the large number of disabled people that require specialist care and those who experience homelessness.

To make sure that everyone receives the same level of care, regardless of where they live. At the moment there are differences in the quality and level of community-based specialist care services that patients, families and carers across North West London receive. This means that depending on where a patient lives, they and their family and carers may always be able to get the support they need, and may not be able to have their wishes supported at the end of their life. We want to do all we can to make sure this is not the case.

  • Implement a 24/7 telemedicine co-ordination, advice and support service for care home staff to better support their residents at end of life.
  • To improve co-ordination and navigation of care and support available, implement a single point of access (preferably a single telephone line) for patients, family, carers and clinicians to contact to obtain information about what palliative and end of life care services are available, how to access them, support with getting medication and equipment etc.
  • To build flexibility into the service model that supports a person and their family to change their mind about place of care and place of death even if it is at the last minute. This could be where a person has always said they wanted to die at home but change their mind as they and the family are scared or believe it is too hard on the family who initially thought they could cope. Instead they want to go to a hospice or a hospital.
  • Align GPs more closely with individual care homes and develop enhanced care services.
  • Pembridge in-patient service should be reopened.
  • A review of the number of hospice inpatient beds should take place.
  • The number of and quality of care plans need to be improved.  Patients and families need to be given access.  More needs to be done to ensure health professional access the care plan routinely when seeing patients.
  • There needs to be improved record keeping around preferences, treatment etc. and more needs to be done to make sure they are automatically accessed by the people providing care.
  • The need to identify that someone is dying and recognise this earlier was identified as an important point that feeds directly into the patient and families choices about appropriate treatment etc.
  • We need to make sure that there are wrap around care to provide support to the patient if they are to stay at home.
  • Care needs to be holistic, and include clinical and non-clinical support e.g. Home adaptations, advice and support on what to do when a patient passes away.
  • There is a lack of bereavement support across NW London for families and carer.  A review of current provision is needed to understand what type of support is needed and how it could be delivered.
  • We need to ensure we consider the impact of caring for someone who is dying on family and carers.  Concerns were raised about impact on:
    • unpaid carers and those who are older
    • Those who have their own health issues and are struggling
    • Are trying to hold down employment or have kids and are busy and what that means for them trying to undertake a caring role.
  • The way someone dies can have a big impact on the person caring for them and we need to ensure that support for relatives and carers continues after the person has died.
  • Palliative and end of life care needs to be patient centred and the importance of family/carers/those of importance to the person being involved in decision making and kept informed.
  • We need to think about how we design more integrated services, between the patient and family, the community, social care and clinical services.
  • Care and support needs to be available 24/7 365 days a year (including pain relief). out-of-hours service (OOH), consider including an OOH service to impatient services to enable carers and patient seek help when needed.
  • Lack of clarity for carers/family around medication. Medication for EoLC patients should be thoroughly explained to carers/family members so they are able to identify which medications are missing and act quickly.
  • Family members and carers should be kept informed at every point during a patient’s care pathway.
  • Professionalism, Confidentiality and Compassion - Clinicians visiting family homes to see EoLC patients should be briefed fully on the patient’s condition/situation and maintain the highest level of confidentiality when they are communicating with other clinicians in the presence of the patient and other family members.

To make it easier for people to access services, particularly across our more diverse communities. Some of our services are not joined up and do not work well together, and we need to change this.

  • More needs to be done to create culturally competent services that take into account cultural and faith beliefs.
  • We need services that are able to care for people from ethnic minorities who may not speak or have difficulty speaking and understanding English.
  • Participants identified a need for existing care and support services to do more in reach into different communities in a culturally sensitive way.
  • More needs to be done to promote community-based specialist palliative care, encouraging people to think, talk and plan about end of life care.
  • The importance of having local services was stressed with reference to the cost, time and difficulty of using public transport.
  • Need to design services that take into account people cultural and faith needs.
  • Creating seamless service provision with services properly integrated with other ancillary services like 111 would make them easier to access and improve patient experience of care.

To cope with the increasing financial challenge, the NHS is facing and the effect this has on community-based specialist palliative care.

  • Consider a proper financial settlement for hospices as their financial situation has been exacerbated by Covid.
  • Local residents wanted to know more factual information on finance, demography and the help available locally.
  • Look at ways of clawing back some funding from the NHS service providers when patients with intensive clinical needs decide to die at home.

To reduce the difficulty, we are having finding, recruiting and keeping suitably qualified staff, and the knock-on effect this has on our ability to provide services.

  • A comprehensive workforce plan is needed to address the workforce challenges mentioned in the report.
  • More needs to be done to educate and train all workforce to identify need. This should be NHS, Local Authority (social care) and voluntary groups so they can capture and signpost potential need.
  • Need to build extra capacity and extra staff to meet growing demand.

The full interim engagement outcome report is available here.

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