On Tuesday 20 January I gave evidence, on behalf of Rowcroft Hospice, at the House of Commons Health Select Committee Inquiry into End of Life Care.
There were two witness panels that day. The first involved the regulator CQC, the National Council for Palliative Care, and the academic body Cecily Saunders Institute. The second panel involved Age UK, National Bereavement Association, the children's hospice umbrella organisation Together for Short Lives, and ourselves Rowcroft Hospice.
You can watch the proceedings here.
Giving evidence was an opportunity to demonstrate the impact of hospice's in end of life care and to address some misconceptions about hospice care.
I was also determined to weave into - even just one answer - the futility of devising methods of counting, measuring and then pricing end of life care; this sort of care does not fit into convenient packages.
By doing so I wanted to influence a pragmatic approach to the better funding of end of life care, particularly within hospices. I am one of many who are concerned that without this, the services currently provided for people with life-limiting illnesses are simply not sustainable.
The key messages are:
- At any time one percent of the population of England are in their last year of life and at some point we will all join this one percent.
- People in their last year of life account for 30 percent of all patients in hospital. This rises to 50 percent for the over 85s.
- People in their last year of life account for 15 percent of all emergency admissions.
Of the patients in hospital, whose admission ends in death, 40 percent had no medical need to be there; and a quarter of those had spent greater than one month in hospital prior to dying
I was sure the committee already knew and understood the above. We have too many people within their last year of life, in hospital, with no medical need to be there. Only five percent of the population state hospital to be their preferred place of end of life care and yet in England, 50.7 percent of people die in a hospital environment.
Surely this failure to meet a basic need must be an important issue for society; if it occurred during any other stage of life people would be shouting from the roof-tops about unacceptable loss of personal freedom.
Secondary to this is the consequential economic and logistical pressure put on the NHS acute system by unwanted hospital admissions, relating to real people who would prefer to be and would - subject to resources existing - be better cared for within their communities.
On the matter of 'subject to resources existing' I could only speak from the perspective of Rowcroft Hospice.
We serve South Devon, which includes Torbay, Teignbridge and parts of South Hams. It is an area of high rurality and has pockets of extreme socio-economic deprivation. 24 percent of its total population is over 65; currently greater than the 2035 national prediction of 23 percent. 1.2 percent of South Devon's population are in their last year of life; one fifth greater than the England average.
Despite this, the coordinated Health and Social Care community of South Devon is achieving end of life place of care outcomes that defy these demographics.
2010-12 data from the End of Life Intelligence Unit demonstrates that for NHS South Devon & Torbay CCG
- 43.1 percent of deaths were in hospital compared to an England average of 50.7 percent.
- 47.8 percent of deaths were in homes and care homes compared to an England average of 41.1 percent.
- 7 percent of deaths were in the hospice compared to an England average of 5.6 percent.
I advised the Commons Health Select Committee that the only explanation I could see for our area achieving preferred place of care outcomes that better the national average was the co-ordinated and multi-setting nature of our palliative and end of life care services.
Our nurse-led 24/7 Hospice at Home teams support patients and families in their own homes, including care homes, during the last two weeks of life. Further multi-disciplinary support is provided through outpatients, including an extensive chronic oedema clinic.
All these services feed into and support one-another. As patients and families circumstances change, there are alternative resources available, if needed.
Our Hospice at Home team works directly with GPs, District Nursing and Care Homes in supporting patients, residents, families, friends and carers.
Our Education team works with care teams, both in a formal training setting and within their care environment to enhance skills and confidence; which ultimately reduces the emergency admission reflex response in a crisis.
Our services inter-leaf with the acute hospital palliative care team, enabling us to share resources.
The committee, naturally, were interested in what stops or will stop the above from happening.
At the time, true to my agenda, I focussed on the issue of funding. I stated my opinion that, 11 years on from the first palliative care funding review, the second funding review was no nearer establishing how cases of palliative and end of life care can be consistently financially quantified, than the first.
Palliative and end of life care are not linear processes. Within end of life people, patients and families alike, tend not to conform to protocols or algorithms. The process is deeply personal, deeply important and done well, has a long term preventative health impact that defies predictive models.
Is it too simple to accept done well it works well and should be properly supported financially, through pragmatism rather than made up tariffs?
I watched the second day of the inquiry, during which the Rt Hon Norman Lamb MP, Minister of State for Care and Support, Department of Health and Dr Martin McShane, Director for People with Long Term Conditions NHS England, were giving evidence.
The panel were asked about the freezing or loss of NHS funding to hospices. Within, or rather at the end of Dr McShane's answer the following was said, 'We also have to recognise that, with best intentions and endeavours, some people have set up hospices that may not be part of the service need within the community.'
I was both dismayed and indignant. Most of Rowcroft's work is in the community; most of our support comes from the community; and the NHS England Director responsible for the domain that end of life care has been shoe-horned into, appears not to know this. Worse still it appeared to me that hospices were being falsely reinforced as places of death.
After time I came to a different conclusion...
The hospice movement has a responsibility to develop, deliver and maintain services in settings in which our communities wish to be cared for, if it is to continue to claim the mantle of 'choice'.
I also recognised, more clearly, that unless we are bold and brave in telling people about why and how we do the things we do, how can we, or should we, expect them to understand the extent of care hospices deliver.
I am now further of the opinion that fair funding is not the only thing that will stop us continuing to deliver these services; hospices do have to ensure that we are moving service delivery into community settings, we have to integrate our service delivery and inter-leaf with other providers, and we must actively help people understand what we really are, how we support lives and, most crucially, why we exist.
We all need to be able to boldly state our purpose and to tell our stories.