Tracey Bleakley, Chief Executive of Hospice UK, argues that public services need to take their lead from hospices and palliative care services, given their strong ethos of personalized care, and work more in partnership with them to support increasing numbers of people with long-term conditions.
Just over a year ago I was on the Today Programme explaining how hospices work with communities when one of the presenters (Sarah Montague) asked me why hospice care wasn’t being extended beyond palliative care to help those with long-term chronic conditions. For a moment I was speechless – I had outlined that hospices can’t currently help 118,000 people a year who need our support in the last weeks of life and yet Sarah wanted us to reach even further.
It was only in a meeting last month of the NHS England Personalisation Steering Group that I started to realise how much society had changed since the creation of the modern hospice movement and that perhaps we need to look at the scope of hospice and palliative care in a different way.
The term ‘personalised care’ gives people choice and control over the way their care is planned and delivered, based on ‘what matters’ to them and their individual strengths and needs. This shift requires a system that supports people to stay well for longer and makes the most of the expertise, capacity and potential of people, families and communities in delivering better outcomes and experiences when unwell. This is also the underpinning ethos of palliative care.
Personalised care is based on a whole-system approach, integrating services including health, social care, public health and wider services around the person. It is intended to provide an all-age approach from maternity and childhood through to end of life, encompassing both mental and physical health and recognises the role and voice of carers. It is a partnership between the NHS, communities and the voluntary and community sector created on an individualised basis to support people and help build resilience. The aim is that personalised care will become mainstream across the health and care system.
This is very different to the condition-centred approach currently at the centre of current health and social care provision and it will require a huge culture shift. The question is – as hospice and palliative care providers, should we challenge ourselves to rethink our role in a similar way rather than merely asking how we can provide our current services within personal budgets as a new commissioning model?
One can argue that palliative care and personalised care share the same DNA. Specifically, the World Health Organisation defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness’, which is ‘applicable early in the course of an illness’. Palliative care is centred on the person and not the condition/s or symptoms. It balances medical, social, spiritual and practical needs according to the priorities of the person, their family and their community. In this way, it is rooted in the same values as personalised care.
The question is – how early should we intervene with conditions such as dementia? We know that many cancers are treated as chronic conditions now and many cancer survivors end up with long term disabilities requiring ongoing care and support. Diabetes, heart conditions, COPD, Multiple Sclerosis and Parkinson’s are other good examples where people can live for many years with conditions that will eventually be terminal.
Do we currently consider frailty within the remit of palliative care? Should we? The British Geriatric Society argues that palliative care is very helpful, advocating that referrals should start ‘early when the person is vulnerable to decline to establish a relationship with the team, but also when deteriorating. Very few hospices currently have programmes of community support for those with frailty, with patients often referred much later as a result of a comorbidity such as cancer or COPD.
Research carried out on 2015 data found that patients in the North are on average referred to hospices 35 days before death, lengthening to 55 days in the South, Midlands and East of England. So often families miss out on the benefits of palliative care because the onset of death is difficult to predict. This comes from the fact that we need to ration hospice care to the people who need it most, to preserve scarce resources and operate within our means. What if we didn’t need to ration palliative care? What if we could afford to provide it much earlier and for more people?
Children’s palliative and hospice care begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Taking aside for a moment the question of affordability, should we be aiming for everyone with a long-term chronic condition to experience the benefits of high quality palliative care such as improved quality of life, better communication and person centred care? The benefits could be significant. By tapping into the specific needs of the patient and the skills and support offered by their family, carers and local community, resources can be targeted where they are most needed.
NHSE tracked over 9,000 people with long-term conditions across a health and care system, and found that people who are more confident and able to manage their health conditions have 18% fewer GP contacts and 38% fewer emergency admissions than people with the least confidence. Perhaps universal personalised care and integrated services across organisational, cultural and community silos is the answer. If so, what would the role of hospices be in this new world?
For me, the value of hospices has always been just as much about the ripple-effect of partnerships and sharing knowledge and experience as it is about the core services they provide to patients. Whether they coordinate care in a single point of contact across the region for those in the last year of life, provide education to other health providers, or provide mentoring and support to local care homes to reduce hospital admissions, hospices are at the centre of enabling communities and partnerships to socialise high quality end of life care. It is that coordination role that could be extended so much further.
The College of Policing reports that 80% of forces have significant increases in referrals for vulnerable adults over the past 3-5 years, with some forces seeing increases of over 1000% After decades of reducing fires across the UK (making the fire service essentially a prevention and education organisation), house fires are on the rise again – and the majority are now caused by dementia. Housing Associations and home builders are starting to look at accommodation design as a health issue, and we know our built environment can be a significant determinant in wellbeing. We still characterise ‘old-age’ as starting at 65 yet we expect people to stay in work until they are 67 and be fit and productive (and we expect this age to rise), and we know that loneliness is a significant social issue which impacts on quality and length of life.
Suddenly health takes on a much broader context, requiring integration across social care, employment, housing, policing, communities, and beyond. The Pentagon of Support is a useful model that has been developed by the Transitions Taskforce to help life-limited children redesign their support needs after reaching the age of 18. Virtual communities of practice supported by their local hospice as a hub could use this model far more widely to engage partnerships in supporting those with long-term conditions in a personalised palliative care approach. Project ECHO is already being trialled across the hospice, health and social care systems in the UK to create such partnerships with encouraging results.
In 2017, hospices provided support to 212,000 patients with 84% of services being provided in the community. By adopting a wider personalised care approach, the 450,000 people who die each year who could benefit from palliative care could receive tailored help and support over a much longer period, and the 25% rise in demand expected by 2040 could be managed.
Achieving parity between the NHS and the third sector will be critical to the success of personalisation. The need for a different funding settlement to support the change in culture and provision cannot be ignored, but it should be seen as a necessary enabler rather than a barrier to change.