London, (Parliament Politics Magazine ) – Fifty-five years ago, Cicely Saunders opened St Christopher’s Hospice. Ever since, as hospices opened, they have all relied on donations to fund their caring services. Over the years the amount that hospices services received from the NHS varied widely, but the pandemic revealed the extent of their financial vulnerability. A much-welcomed government bail-out allowed many hospices to remain afloat during those years, but the distribution of such services remained very patchy, often with hospices situated in wealthier areas where fundraising was easier in the long term. Several became part of specialist training rotations in palliative care, particularly towards consultant posts.
This uneven distribution had serious consequences for those needing palliative care services. Some NHS Trusts realised the benefits of having an on-site hospital palliative care team to support other services, to improve symptom control and thereby to facilitate discharge, or to engage in the difficult conversations other clinicians feel they had neither the skills nor the time to undertake. In some areas, community-based teams grew up in an ad hoc way, partly through charitable initiatives and partly with some NHS support. The problem of geographical inequity, however, was compounded by many of these services being available only during weekdays when other teams were around, but with no out-of-hours service.
Disease does not respect the clock or the calendar – crises can arise at any time. Yet today, in many parts of the country, 75% of the hours in a week are without effective palliative care cover.
In Wales in 2008, the report chaired by Viv Sugar recommended that there must be fair distribution of services, available 24/7, with rapid response times and integrated with the NHS to ensure important patient data was available to clinicians providing care. Implementation of the report was initiated by the Health Minister, Edwina Hart, with an allocation of funding of around £2 per head of population. That allowed all palliative doctors and many of the specialist nurses to be employed on NHS contracts, with pooled on-call rotas. A funding formula allowed areas of under-provision to be invested in without jeopardising the funding of those hospices that already had well negotiated NHS funding. Unified IT Systems gradually pulled all information systems together, with all-Wales agreed standards for clinical services.
Now, the lessons from Wales are being adopted in England, and England is going further. In the Health and Care Act the Government accepted the need to amend the Bill as it went through the House of Lords, to include palliative care services as part of core NHS provision. In the debate, the point struck home that no-one would advocate having a fundraising cake sale so that a woman in obstructed labour can have a caesarean section, so why turn a blind eye to ways to improve the quality of life of those with serious and life-threatening illnesses and support their families?
On average, one person dies every minute in the UK, the vast majority of whom have some level of palliative care needs. Of course, specialist palliative care cannot and should not be the main source of care for all these cases. Most services can provide excellent palliative care for most of their terminally ill patients. Indeed, every clinician should have basic palliative care competencies, should know when to call for help and advice and feel confident in getting that support. Moreover, that support must be always accessible, which means services need to work across the seven days of the week, providing night-time telephone advice if needed to other clinical staff and being involved across a hospital and a community at points of greatest need.
Until now, about two thirds of Clinical Commissioning Groups (CCGs) have not ensured they have had adequate services. Now, the Integrated Commissioning Boards that replace these CCGs must ensure they meet the needs in the population for whom they have responsibility. They will need to engage in careful clinical service contracts with whoever in their area has the skills to meet those needs, and charitable sector providers will need to ensure their clinical services meet needs. The changes can benefit all concerned – patients will be able to have access to care when in crisis, clinicians can benefit from being on NHS contracts, the NHS will benefit from improvements in patient care that can avoid or shorten inpatient stays, and hospices will be able to ensure the core clinical service is NHS funded whilst leaving them free to fundraise for all the important extras that make hospice care so special, like better facilities, higher staff ratios or an expansion of imaginative ways to support people in their communities.
by Baroness Finlay of Llandaff