The Health and Care Bill, announced in 2021, defined and proposed to improve the delivery of health care services, integrate care and improve population health across Integrated Care Systems. Yet, at the time of the initial publication, palliative care was not recognised within the Bill.
According to the World Health Organization (WHO), palliative care is defined as: ‘…an approach that improves quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention of suffering by early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual’.
Data from Marie Curie suggests that approximately 215,000 people currently do not receive end of life care. Furthermore, many people experience barriers to equitable palliative and end of life care including Black, Asian and minority ethnic communities, people with learning disabilities, LGBTQ+ and other underserved groups.
Campaigning for change
Prior to the publication of the Bill, several charities including Marie Curie, Hospice UK and Together for Short Lives, led by Baroness Finlay of Llandaff, campaigned for a change to the Health and Care Bill in the House of Lords to include palliative care as a fundamental health care requirement.
Following months of lobbying, the Government approved the amendments to the Health and Care Bill to include a change of law in the commissioning of specialist palliative care services throughout England.
Responding to the news of the amendment, Baroness Finlay said, ‘For the first time, the NHS will be required to make sure that there are services to meet the palliative care needs of everyone for whom they have responsibility in an area. People need help early – when they need it, seven days a week…disease does not respect the clock or the calendar.’
The Health and Care Bill will now ensure that Integrated Health Care Systems and health commissioners legally consider palliative care as an essential requirement and available to all.
Changes in practice
Current specialist palliative care provision is often deemed as being a postcode lottery; however, the Bill now requires that dying people have a legal right to access palliative care across every area in England. With the demand for palliative and end of life care expected to increase rapidly over the coming years, the amendment to recognise palliative care is both necessary and timely. But what does this mean for palliative care services? The Bill aims to reform health care delivery and recognises the need for collaboration, which responds to local population health need. It hopes to promote integration and facilitate collaboration between health and care organisations at a local level. Improved partnership working between specialist palliative care and generalist palliative care should support better communication between services, education opportunities and improved provision of end of life care.
How this will impact on people
The core aim of the Bill amendment is to ensure that the provision of specialist palliative care for local populations is placed high on the agenda of commissioners. To those persons with a life-shortening condition who require specialist support, and their families, this change could mean the difference between achieving a good death or as is often reported now ‘a less than satisfactory experience’. For communities who currently are disadvantaged because of a lack of specialist palliative care services in their locality, the proposals have the potential to positively impact on their care.
Timely access to services 24 hours a day across a seven-day week, which offer expert symptom management and psychosocial support, could improve the quality-of-life for the growing numbers of people who are expected to need these services. It should be recognised that some areas of the country already have excellent specialist palliative care provision with access to hospice care and specialist teams in hospital and community. However, for those areas currently not so well provisioned, this lack of support places extra pressure on the NHS with patients who should be able to access the care they need outside of an acute hospital bed.
Impact on families
For the families and carers of people who have a life-shortening illness, the inability to access specialist palliative care locally and at the time they need it can cause an unnecessary additional burden. If the amendments in the Bill are widely adopted across integrated services, then more families and carers will be better informed and supported. Families and carers will also have more choice around the availability of services for their loved ones and be able to access ‘around the clock’ specialist advice.
Dame Cicely Saunders is highly regarded as the founder of the hospice movement and acknowledged that how a person dies remains in the memory of their families and carers. This supports the need for the availability of specialist palliative care for all who need it. Consideration should also be given to the need for pre- and post-bereavement support – another service that is sporadic across many settings. Whilst many hospices offer the care needed that is highlighted within the amendments to the Bill, not all localities have specialist hospices and, where there are hospices, due to inequalities of commissioned funding, services are at risk of being cut. Hospices have been facing critical funding issues for a prolonged period and are reliant on the financial charitable support of their communities which, in the current challenging economic climate, is not a dependable source of income.
A step in the right direction?
Access to specialist palliative care for those persons that require it should be an integral part of the wider health care system. The changes brought about by this Bill most certainly indicate a move in the right direction. It should not be something that happens by chance dependent upon the locality in which a person lives and the services that are or are not commissioned. The success of the Bill is dependent upon wider system collaboration, equity of funding by commissioners and the development of services.
Claire Towns is CEO and Matron at The Mary Stevens Hospice, Stourbridge. Email: [email protected] Twitter: @MSHospice. Gemma Allen is Palliative Care Inclusion and Community Partnership Lead at The Mary Stevens Hospice, Stourbridge. Email: [email protected] Twitter: @MSHospice
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