APPENDIX 20
Letter from Dr Keri Thomas to the Chairman
of the Committee (PC 24)
GOLD STANDARDS FRAMEWORK IN COMMUNITY PALLIATIVE
CARE
I am writing to you as a GP, previously from
Wakefield, with a particular interest in developing good palliative
care services at home, and now as National Clinical Lead in Palliative
Care CSC, working from Birmingham Cancer Network. Whilst still
a GP in Wakefield, I wrote, developed and piloted The Gold Standards
Framework in Community Palliative Care (now supported by Macmillan
GSF Programme and the Cancer Services Collaborative). I am not
sure whether you are aware that this actually began life in your
nearby in West Yorkshire, and thought it might warm a Yorkshire
heart to know of its origins! It was only thanks to the support
and keenness of local Yorkshire GPs, District Nurses and my Health
Authority that this developed into the National programme it is
now.
You may not remember, but we met on a few occasions
whilst I was practising as a GP in Chapelthorpe, Wakefield (from
1992 to 2001), most notably at Wakefield Hospice's Tenth Anniversary
Conference a few years ago. I also at the time worked as Macmillan
GP Facilitator in cancer and palliative care in nearby Calderdale
and Kirklees Health Authority based at Huddersfield, visiting
primary health care teams and discussing the barriers and issues
around improving care of the dying at home. Over a four year period
this evolved into The Gold Standards Framework (GSF) aiming to
crystallise the "Gold Standard" of care provided for
patients in their homes by GPs and District Nurses with seven
key standards or tasks. The main underlying thinking is to:
1.
Identify those patients in need of palliative/supportive
care (on a supportive care register);
2.
Assess them according to their needs and preferences
(preferred place of care/death); and
3.
Plan ahead, with anticipatory measures such as drugs
in the home, handover from the out of hours provider etc, and
at all levels to communicated this to the patient and carer and
other teams including specialists involved.
Now the GSF has taken off across the UK, with
about 1,000 GP practice teams in England, a third of practices
in Northern Ireland and about 300 in Scotland with a plan to roll
it to all 1,000 practices. We hear comments from GPs that this
puts them back in touch with the reason we came into healthcare,
and that it has enabled DNs to do the job they had always wanted
to do. And patients and carers greatly appreciate the well managed
care they receive, and feel well supported at this most difficult
time. We are fully evaluating the impact of The Framework (Warwick
University GSF Evaluation Project) and find that many more patients
are enabled to die where they choose, with fewer crises and admissions,
better symptom assessment and control, better support for carer
(with home pack) and better confidence and satisfaction.
Improving palliative care affects hospital capacity
and waiting times by reducing the number of inappropriate hospital
admissions, decreasing length of stay and the hospital mortality
rate, and ensures more effective use of specialists, enabling
more people to die a dignified peaceful death where they choose.
Originally funded by my NHS Health Authority
in West Yorkshire, the Macmillan funded GSF programme has over
the last year helped to support practices in this work. But this
has a limited life, and work is now being handed back, quite rightly,
to the NHS Cancer Network structure throughout England, to mainstream
this into the NHS. It is being very well received by practices,
with queues of practices wanting to join, and is supported by
Professor Mike Richards, National Cancer Director, who wants this
to be offered to every Primary Health Care Team in England. However,
next year we will be running out of central funds to support this
work. The main cost is in resources and funded time including
that of local PCT facilitators, who develop this work locally.
I am aware that John Reid's recent announcement
of the £12 million may help to support Gold Standards Framework,
along with the Liverpool Care Pathway—two initiatives that
are very complementary and are both effective tools to improve
care at home provided by the usual generalist health care worker.
Most care for patients at the end of life is provided by generalists,
and can therefore be optimised by the use of such tools, good
access to learning and specialist support.
I have also submitted evidence to the Palliative
Care New Inquiry. This is a crucially important time to reconsider
end of life care as a whole—it is too big a problem to ignore
or to leave to chance, and we all hold responsibility to get it
right for dying patients. This affects everyone—it will
be us and our own families soon enough! I suggest we begin to
follow the example of other countries in addressing the major
problems of improving care at the end of life, beyond the remit
of specialist palliative care.
At this important time of reconsidering all
care at the end of life in the light of this "looming epidemic",
I would be very grateful if I could discuss this work with you
further at some stage, both improving end of life care and the
GSF. This work is a crucial vehicle to improve care at home, with
all the inherent sequelae. It now requires central support for
it to progress further, beyond initial start up funding by Macmillan
and the Cancer Services Collaborative. It has been praised by
Prof Joanne Lynn as the most effective palliative care collaborative
currently on-going in the world, and has enabled many practices
to kick start real improvements in their care for seriously ill
patients. I could happily give more details if needed.
I hope this makes you feel proud of the origin
of this from Yorkshire—it was a great beginning and I hope
it will continue to have a real effect in improving patient care
towards the end of life.
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