The Rt Hon Steve Barclay MP 26th March 2023
House of Commons
RE: Funding for hospice services in the UK
Dear Secretary of State,
What does death mean to you?
I appreciate that starting this letter with such a bold and direct question may be somewhat unorthodox, but I am led to begin my appeal to you with this magnitude of emotional charge given the dire state of the United Kingdom’s hospice services. The chronic and historical underfunding of hospice services has meant that what it means to die a ‘good death’ in our country is an issue wrought with the same kinds of social and economic inequalities that permeate into so much of what it also means to be able to live a ‘good life’.
Why do I believe that hospices are so important? As an Anthropology student, my studies have enabled me to learn a great deal about how ‘death’ – both as a physical and social process – is made sense of and understood within different cultural contexts. More specifically, learning about different approaches towards end-of-life care across the globe has broadened my perspectives into how diverse factors such as family dependency, certain rituals, or being in a particular physical place or position help to constitute what makes up a ‘good death’ within the subjective life-worlds of different people (Barrett, 2022).
The point is that death and dying is something that each of us can never truly comprehend until we ourselves are experiencing it. Death is – and must be allowed to remain – an incredibly personal process. Anthropological research has shown that for some people at the end of life, being able to pray, or read their favourite book, or be in close proximity to a particular object (as well as of course people) could be seen to be as much a form of care as them being provided with a certain medication (Lerer, 2015). I am therefore a firm believer that hospice care is an undeniably vital asset of any society that possesses a duty of care to its population. This is because – as the founder of the modern hospice movement Dame Cicely Saunders put it herself – hospices provide care for the ‘total pain’ (1996) that an individual approaching the end of their life might be facing. This holistic care for ‘total pain’ involves considering an individual’s social, spiritual and psychological needs as well as working to alleviate the physical symptoms that they may be facing (Barrett, 2022). As one woman whose mother died in a Sue Ryder hospice put it, “hospice care is as essential to families who use it as a maternity unit is to new parents” (2021, paragraph 10) citing the fact that her mother being in a hospice enabled her to “just be her daughter again” rather than her carer, and hence “able to sit with her, hold her hand and make precious memories” (2021, paragraph 9). It is examples such as these which testify to the work of hospices as places that allow ‘families to be families’, and help to prevent the medicalisation of family relationships being an inevitable and unwelcomed occurrence (Lerer, 2015). In many ways I would argue that hospices can be considered to be ‘homes away from homes’, precisely because they help to foster a sense of ‘plurality’ in the way care is delivered (Lerer, 2015). Furthermore, it is also important to note that hospices provide outreach services to people still living in their actual homes too (NHS, 2021) precisely because they seek to provide those within their care with the kinds of empowerment, agency and dignity that dying on an overcrowded (and heavily medicalised) hospital ward is often unable to bring (Kaufman, 2005). This is especially important given the evidence which highlights hospital being the least favourable place to die for patients living at the end of life (Arnold, et al., 2013).
As I am sure you are aware, with Dame Cecily Saunders being the first hospice pioneer, it was in our own country, at St. Christopher’s Hospice in South London, where the first purpose-built hospice was created and where a prototype for other hospices around the world also emerged (Clark, et al., 2003). I find it a great travesty then, that in the country where the modern hospice was born, we are facing a hospice service on the brink of collapse. The root cause of this problem is that only 37% of the funding that hospices receive comes from the government. With the running costs for the hospice sector estimated to be £947 million every year from now until 2030, then as stated by hospice charity Sue Ryder, if the government maintains this mere 37% of NHS funding then the hospice sector will be required to fundraise £597 million annually in order to protect hospice services from all out collapse (2021).
Your predecessor, the Rt Hon Thérèse Coffey MP, proudly declared in her speech at last year’s Conservative Party conference that “the NHS is and always has been a national endeavour” (Coffey, 2022). By making such a bold and direct statement, Ms Coffey was arguably making a clear connection (as I have noted your party frequently likes to do) between our health service and notions of nationalism. If health in this country is, as your party says, a ‘national endeavour’, then do the terminally ill and the dying not also form a part of this nation? If health is a ‘national endeavour’ then why does the maintenance of the health and wellbeing of those living at the end of life fall mostly upon the backs of ordinary people being expected to donate money at bake sales or through other similar means? In line with what is being called for by hospice charity Sue Ryder, I therefore strongly urge you to increase the levels of funding that the government provides to the hospice sector so that 70% of funds are provided by the NHS.
This is especially important given the cost-of-living crisis that this country is currently experiencing as the soaring cost of energy bills has left many hospices seeing a 350% increase in energy costs (Butler, 2022). This is happening at a time when due to the economic squeeze that is affecting everyone across the country, more people are finding themselves unable to continue giving charitable donations to hospices, and as of such, the sector’s main source of income is under threat (Butler, 2022). It is also the case that some of those receiving hospice care within their own homes cannot even afford to have their central heating systems running nor make use of the specialist equipment required for the maintenance of their care, and as of such, the quality of their care is falling below par (Butler, 2022). Examples like this highlight how, even in death, it is the poorest who are losing out. It also highlights how the ability for individuals to have specific physical health needs met can be impeded by economic insecurity.
Such instances arguably tie in with wider understandings surrounding the ‘syndemic model’ (see [Singer, et al., 2017]). Syndemics refers to the synergistic interaction between biological epidemics and social ones. Although this model is usually used in reference to how the social determinants of health (such as poverty) are able to influence ‘disease clusters’ in particular localities, I would argue that it is a viable way of making sense of socioeconomic inequality in regards to hospice care and accessibility. This is because studies have shown that people from ethnic backgrounds and lower socioeconomic backgrounds are underrepresented in hospice services (Tobin, et al., 2021). This means that their ‘total pain’ needs (Saunders, 1996) at the end of life are less likely to be met due to existing inequalities. I would therefore argue that hospice care, but also public health more generally, should be looked at through a biosocial lens. In this way policy makers will be able to better understand how social inequalities interact with biological diseases, but within the context of hospice care specifically, how the social interacts with the biological, psychosocial and spiritual needs of individuals too.
Thank you, Secretary of State, for taking the time to read this letter. I began this petition to you by asking you a question. I would be lying if I said that the intention of my question wasn’t to shock you and make you think. But now as I conclude my letter I hope I have left you with enough reasoning as to why hospices are so necessary and why the funding crisis they are facing must be tackled.
Like life itself, our hospices are precious. Now is the time to save them.
An Anthropology Student
Anon., 2021. It’s time to end the hospice funding crisis. [Online]
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Barrett, R., 2022. Medical Anthropology at the End of Life . In: M. Singer, P. I. Erickson & C. E. Abadía-Barrero, eds. A Companion to Medical Anthropology . Hoboken, NJ: Wiley , pp. 198-212.
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