ICS0031

Written evidence submitted Marie Curie

Marie Curie welcomes the Public Accounts Committee’s Inquiry into progress in establishing Integrated Care Systems (ICSs) in England. The Committee is examining the extent to which this new system is being set up in a way that will allow it to achieve its core stated objectives of:

• Improving outcomes in population health and healthcare;
• Tackling inequalities in outcomes, experience and access;
• Enhancing productivity and value for money; and
• Helping the NHS support broader social and economic development. 

We recognise that this Inquiry is taking place at the very early stages of the new ICS arrangements being put in place, and that a definitive assessment of whether these will allow ICSs to achieve their core objectives is not possible at this stage.

In this submission, we provide the Committee with early evidence on arrangements for the provision of palliative and end of life care in ICSs and examine the extent to which these are allowing them to meet their stated core objectives. This includes a preview of forthcoming research examining gaps in out-of-hours service provision.  

We identity two significant risks presented by current arrangements for the meeting of core ICS objectives: weak coverage of palliative and end of life care services in early ICS strategies; and significant gaps in out-of-hours provision of these services in community settings. 

We also make specific recommendations for mitigation and management of these risks to support ICSs to meet their core stated objectives and share a case study example of an integrated service model of palliative and end of life care that is successfully managing these risks.  

Improving outcomes and tackling inequalities for people at the end of life

There is currently significant unmet need for palliative and end of life care in England and this is contributing to poor outcomes and significant inequalities for this group in local populations. 

As many as 90% of people who die could benefit from palliative care, but around 25% of them are not currently receiving that care. 

Research by Marie Curie and others indicates that certain groups face particular barriers in access to and experience of palliative and end of life care, including people who are living in poverty, alone, or with dementia – as well as people with learning disabilities, those who are homeless or in prison, ethnic minority groups and LGBTQ+ people.

There is also currently a ‘postcode lottery’ in access to and experience of palliative and end of life care in England, with people living in deprived and rural areas experiencing particular challenges in accessing the care and support they need.  

As a result of our ageing population, in twenty years’ time, there will be 144,000 more people dying each year in the UK. The number of people dying with a need for palliative care is estimated to increase by at least 22% by 2040.

Enhancing productivity and value for money for the NHS

Palliative and end of life care in community settings has an important role to play in enhancing productivity and value for money for the NHS. 

For more than a decade, there has been a trend towards a higher proportion of people dying at home instead of in hospital and other in-patient settings. The Covid-19 pandemic has resulted in a further sustained and significant increase in the number of deaths taking place in private homes and care homes. 

This means people with a terminal illness are increasingly reliant on health and social care services in the community. Acute pressures on GPs and district nursing services, workforce challenges in health and social care, and complex referral systems are making it extremely difficult for people to access the integrated and local services they need at the end of life. The result of this is many people at the end of life are entering a crisis situation which requires intervention from emergency and/or acute services. 

Ensuring quality palliative and end of life care is available to people in community settings has been shown to reduce pressure on other NHS services, including by reducing the number of hospital bed days for people at the end of life and reducing unplanned hospital admissions – with around 5.5 million bed days each year occupied by people in the last year of life in England, we estimate that the total cost of these admissions to be more than £1.2bn.

How palliative and end of life care is currently provided

Palliative and end of life care is currently provided by a number of different health and care professionals, including those who provide general health and care (such as GPs, and district nurses or community nursing teams) and those who specialise in palliative and end of life care.

Charitable hospices are the main providers of specialist palliative and end of life care services and only around 30% of their income comes from Government and NHS sources. As demand for this care grows, we cannot rely on charitable fundraising alone to meet this increased demand.  A new long-term funding settlement is urgently needed to ensure that everyone with a terminal illness and their carers have access to the palliative and end of life care they need.

New ICS arrangements for provision of palliative and end of life care

During the Health and Care Act’s passage through Parliament, Marie Curie led a group of the UK’s leading charities and worked with a cross-party group of MPs and Peers to make the case for amending the Act to ensure that arrangements for ICSs could meet these critical challenges.

We welcomed the Government’s response to our concerns, which was to amend the Bill so that clause 16 of the Health and Care Act now includes the first ever legal duty for the NHS to commission palliative care services in every part of England. 

The Government has recently published both statutory and technical guidance on the new requirement to commission palliative care. The statutory guidance states that Integrated Care Boards should commission palliative and end of life care services that align with the commitments within the Ambitions National Policy Framework for Palliative and End of Life Care.   

In particular, we note positive commitments in the statutory guidance on:

•                                                                                                                                                                                                                                                                                                                                                                                                                         Providing support in every setting including private homes, care homes, hospitals and hospices;
•                                                                                                                                                                                                                                                                                                                                                                                                                         Making specialist palliative care advice available on a 24/7 basis; 
•                                                                                                                                                                                                                                                                                                                                                                                                                         Ensuring the right, skilled workforce is available to deliver this care; and
•                                                                                                                                                                                                                                                                                                                                                                                                                         Supporting advance care planning development in all services to ensure patients are able to have open conversations about their needs and concerns.

However, further action is urgently needed to ensure that ICSs are supported to realise their core objectives through palliative and end of life care. 

Weak coverage of palliative and end of life care in ICS strategies is a significant risk for delivery of core ICS objectives

Research funded by Marie Curie as part of our Better End of Life programme has examined the extent to which palliative and end of life care was included in 23 of the early ICS strategies that were published prior to 26 November 2021.   

Of the 23 ICSs that had published their strategies, just six had identified palliative care as a priority area and only three had identified measures of success relating to palliative care, such as reduced hospital admissions. While most (19/23) strategies included elements that could be mapped onto a logic model for integrated care, there was no clear thread from enablers to outcomes in these.    

The researchers found that greater prioritisation of palliative and end of life care within ICSs could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. They also recommended that ICSs should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, they proposed a logic model to outline how different components of care fit together to achieve defined outcomes and impact.

Recommendations for managing and mitigating risks presented by current arrangements for delivery of core ICS objectives

Gaps in out-of-hours provision of palliative and end of life care in community settings present significant risks to the delivery of core ICS objectives around improving population health outcomes, tackling inequalities and enhancing value for money. 

These risks could be managed and mitigated by the introduction of the following policy measures: 

1. Single point of access phone lines for accessing palliative and end of life care out-of-hours

Every part of England should have a designated 24/7 palliative and end of life care phone line staffed by palliative care clinical nurse specialists who can provide advice, guidance and support to access local services. This service should be available to every person in need, their carers and health and care professionals. A single point of access could help prevent distress and reduce pressures on the system arising from emergency department admissions at the end of life. 

2. Involvement of people with lived experience of dying, death and bereavement in ICS service design and delivery

ICS service design and delivery should be shaped by the diverse voices of people with lived experience of dying, death and bereavement – including those living in deprived areas and who are underserved by existing services. Involving a diverse range of people with lived experience in the design and delivery of palliative and end of life care services is a vital first step towards addressing inequalities in access to and experience of services in community settings out-of-hours. 

3. Better sharing of electronic records to deliver personalised end of life care out-of-hours

Access to up-to-date shared electronic medical records gives staff providing out-of-hours care the information they need to provide the most appropriate care safely, quickly, and in a way that meets individual patient preferences. Electronic care co-ordination systems should be resourced in ways that incentivise their sustained use and sharing. Progress on the use and availability of shared records, including Advanced Care Plans, should be audited regularly.

4. A national workforce plan and enhanced staff training in palliative and end of life care

As with many parts of the health and care system, workforce pressures are impacting significantly on palliative and end of life care. For example, over 75% of district/community nurses currently report insufficient staff to meet the needs of their patients. The social care dimension, where the lack of equivalent pay structures to the NHS is contributing to very high levels of staff turnover, is also of critical importance. The UK Government should publish annual, independently verified projections of future demand for the palliative and end of life care workforce and ensure a properly resourced plan is in place for meeting this demand – both now and over the long-term. Palliative and end of life care training should become a compulsory part of training and continuing professional development for all health and care workers, not just those in regulated professions.

Case study of current ICS arrangements that are successfully reducing risks through palliative and end of life care provision

The Integrated Mersey Palliative Care Team (IMPaCT)

IMPaCT was established in 2020 to ensure seamless provision of end of life care in the Liverpool area. The service is comprised of Marie Curie, Woodlands Hospice, Liverpool University Hospitals Foundation Trust and MerseyCare NHS Trust. Before the IMPaCT service, palliative and end of life care was fragmented and difficult to navigate. This was resulting in more hospital admissions in the last days of life than the national average, fewer people dying at home and a smaller proportion of people on the GP palliative and end of life supportive care register. 

The IMPaCT service started by creating two specialised palliative and end of life care hubs and streamlining key processes such as sharing clinical information. However, a key factor in the success of the service is having a single point of access and referral to services through a designated palliative and end of life care phone line. Crucially, this is available 24/7 to patients with a diagnosis of a life-limiting, progressive disease, or those in need of palliative care assessment.  

The benefit to patients and carers is that there is one number that they can call where whatever care and support they need can either be provided directly or arranged quickly.  This is made possible because of the underlying collaboration that allows services to work seamlessly around the needs of the patient and where all the health and care professionals involved know and understand the contribution of their partners in the IMPaCT service.

Both staff and patients value the ability to provide an integrated service where patients and carers can feel that they are known and supported whenever their needs arise. The success of the service can be seen in a 12% reduction in the number of people dying in hospital and in 30% of patients needing no hospital admissions in the last 90 days of life, compared to 9% previously.

October 2022