Written evidence from the Joint Epilepsy
Council (COM 65)
INTRODUCTION
The Joint Epilepsy Council (JEC) is the umbrella
body for 26 epilepsy organisations operating in the UK and Ireland.
The JEC also provide the secretariat to the APPG on Epilepsy (APPGE).
Epilepsy is a common serious neurological condition
characterised by recurrent, unprovoked epileptic seizures, controlled
for many, but not cured, with anti-epileptic drugs. Surgery works
in some cases but is rarely available. There are about half a
million people with epilepsy in the UK, that is one in every 131
or 705 in an average constituency.
990 people in England die every year of epilepsy-related
causes. About 365 of those deaths are young adults and children.
Of the total number of deaths about 400 per year are avoidable.
A shameful 59% of childhood deaths are considered avoidable.
Please note that we fully support the separate
submission of our member organisation, the National Centre for
Young People with Epilepsy.
COMMISSIONING FAILURES
TO DATE
AND THE
RESPONSE OF
GOVERNMENT
There has been a deep and widespread failure
to commission adequate services for people with epilepsy, examined
and identified on many occasions and over a number of years, most
recently in January 2009.
The half a million people with epilepsy, their
family, friends and carers will judge the White Paper reforms
by how much improvement there is to the NHS service to them, a
natural position given the poor service currently received.
A very particular concern is that during the
period of implementation of the White Paper reforms and subsequent
evidence gathering, the small steps already undertaken by the
Department in recognition of this acknowledged problem under the
previous Government have stalled.
In January 2010, the Department and the Joint
Epilepsy Council in partnership, with support from a pharmaceutical
company, arranged a London conference for NHS commissioners specifically
concentrating on the problems of epilepsy commissioning. The then
Minister Ann Keen spoke at the conference, as did the Minister
now responsible for commissioning, the Earl Howe, who was then
the Chair of the All-Party Parliamentary Group on epilepsy. At
the conclusion of the conference he asked delegates to "go
away and make a difference".
Ann Keen subsequently proposed a comparative
study of the efficacy of Epilepsy Specialist Nurses (ESN) by comparing
outcomes from a hospital with an ESN and one without. The new
Government have declined to proceed with this study.
The new Minister responsible for long-term conditions,
Paul Burstow, has declined to meet with us to discuss these or
any other aspect of the widespread failure to deliver an acceptable
service to people with epilepsy.
We therefore fear that it is the current Government's
intention to avoid the issue of epilepsy commissioning failures
during this period of White Paper reform. The potential for no
improvement in services to people with epilepsy over the next
four or five years is not a position we can easily accept, given
the urgent need to save lives, quality of life and the money squandered
in providing a dysfunctional service.
We recognise that our criticism of current commissioning
failures is strongly put. Please see below the basis for that
criticism. None of the following reports have led to a substantial
improvement in the service.
The Chief Medical Officer's Report of 2001 called
for a genuine commitment to put right "serious and long-standing
weaknesses in the standard of care for people with epilepsy."
The NICE-funded National Sentinel Audit of Epilepsy-related
deaths of 2002 showed that 39% of adult deaths and 59% of childhood
deaths were potentially or probably avoidable.
The Government's Action Plan for Epilepsy was
published in 2003. The Action Plan, which lacked targets or provision
for monitoring outcomes, languished.
The National Institute for Health and Clinical
Excellence (NICE) published its clinical guideline on the epilepsies
in 2004. Commissioners have not put in place the service structure
that would allow clinicians to follow the NICE guideline. A service
structure that did so enable clinicians would eliminate many of
the difficulties.
The National Service Framework on Long-term
(Neurological) Conditions of March 2005, which remains in place
under the new Government, whilst not dealing directly with the
key challenges, did in theory offer to deliver some improvements.
In 2007, the All-Party Parliamentary Group on Epilepsy (APPGE)
warned that "progress towards success must be monitored or
risk catastrophic failure". A requirement that all Trusts
and the NHS needed to demonstrate progress at the end of the planning
period in 2008 was not met. Finally, a mid-term review of the
NSF was announced in Summer 2009. The new Government has so far
declined to make progress with this review.
The key initiative that would directly address
the failures in the service to people with epilepsy is the NICE
clinical guideline on the epilepsies however the evidence is that
the services have simply not been commissioned. In January 2009,
clear proof was supplied in the form of a survey of Primary Care
and Acute Trusts entitled "Epilepsy in England: time for
change" published by Epilepsy Action and subsequently endorsed
by the then relevant Minister, Ann Keen MP, in her letter to Strategic
Health Authorities (SHAs) of July 2009 (see Appendix for copy
letter).
The headline figure in the survey amongst many
other disappointing results was that more than 90% of the responding
Trusts failed to meet the two-week guideline for first appointment
with specialist, in some cases by a very wide margin. It would
be wrong to view this as merely a `process target', and it is
worth noting the reasons why NICE considered this first appointment
to be a matter of urgency. A specialist is required to diagnose
epilepsy and no treatment is offered before diagnosis. The consequence
is that many people suffer serious injury and even death before
being offered treatment.
The APPGE Report of July 2007 entitled "Wasted
Money, Wasted Lives" (WMWL), again endorsed by Minister Ann
Keen MP in her letter to SHAs of July 2009, drew upon figures
from NICE and other sources to clarify that £189m was wasted
each year in delivering the poor service to people with epilepsy.
A misdiagnosis rate of 20-31% led to £22m wasted each year
in clinical costs alone. Service failures and delays lead to many
further calls upon NHS resources.
It is also estimated that about 60,000 people
with epilepsy claiming Disability Living Allowance could be returned
to employment with good treatment. We remain concerned that these
are not the sort of efficiency savings commissioners will be looking
to achieve under the White Paper reforms.
The clear and obvious service and commissioning
failures need to be addressed directly and without further delay.
Direct responses to some of the Committee's
specific questions:
CLINICAL ENGAGEMENT
IN COMMISSIONING
How will commissioners access the information
and clinical expertise required to make high quality decisions
about the shape of clinical services?
A large part of this information will be available
from NICE. Of course, much of this information is already available.
In the case of the NICE clinical guidelines for the epilepsies
of 2004, this has not led to the sufficient commissioning of services
to enable clinicians to follow the guidelines. The question for
us is how we can ensure that commissioners actually put into practice
the clinical expertise available to them. The Department acknowledges
failures in epilepsy commissioning. In January 2010, the Department,
in open and full collaboration with ourselves, organised a conference
for NHS commissioners specifically to address those failures.
This conference generated a set of information which commissioners
would find very useful if they were to act on it however, under
the new Government, the momentum gained has been lost. Some further
planned activity has not been acted on and the Minister responsible
has declined to meet with us.
ACCOUNTABILITY FOR
COMMISSIONING DECISIONS
How will patients make their voice heard or their
choice effective?
This will remain a difficult area. The proposed
involvement of Local Authorities and Health Watch gives little
encouragement to the low-volume, high needs patient groups to
think that their needs will be taken into account any more than
they are now. Much expertise rests in national patient bodies
and they are better able to make the case to commissioners than
local bodies.
What will be the role of the NHS Commissioning
Board?
The National Commissioning Board will retain
commissioning responsibility for defined specialised services.
Surgery for children with epilepsy is included in this list. Our
experience of current commissioning for this is that it is another
area of failure. Epilepsy surgery (the only curative treatment)
is conducted on around 100 children annually in the UK yet research
demonstrates that there are around 400 suitable cases each year.
Each year, another three hundred children miss out on potentially
life changing surgery and the wasted costs of their treatment
continue to accrue. How can we ensure that the National Commissioning
Board will perform better than the existing arrangements?
Where will the "buck stop" when commissioners
face hard choices?
It is inevitable that, whatever intermediate
barriers are put in place, Government must accept the final responsibility
for delivering an adequate service. Responsibility for the expenditure
of such a large part of the public purse cannot ultimately be
devolved.
INTEGRATION OF
HEALTH AND
SOCIAL CARE
How will any new structures promote the integration
of health and social care?
It is not clear to us whether the new structures
will promote integration however there are particular problems
in the specialist commissioning for the low volume, high needs
group of people with epilepsy who require residential accommodation
which Government could address now and which would smooth some
of the barriers to integration.
It is not reasonable to expect local commissioning
of the specialist residential and nursing care services which
these patients need and it is unlikely that such services will
exist locally.
The current recommended approach is for PCTs
to group together to commission these services. In the main, this
is not happening. The "solution" adopted by many PCTs
is to place the service-user into cheaper but inappropriate non-specialist
residential care. It is an issue faced by many charities supporting
specific disability groups where needs are high but numbers are
relatively small.
Additionally, and increasingly in the current
economic climate, the pressure on budgets has led to commissioners
regularly offering fees which fail to meet the cost of providing
the care that is needed and, on occasions, threatening to remove
a patient correctly placed in a specialist setting to an inappropriate,
less specialist care setting. There are instances where this threat
has been carried out.
Wasted Money, Wasted Lives in 2007 recommended
that Government develop a National Plan for specialist residential
care. These service users cannot wait to find out if the White
Paper reforms will improve the position. The damage is occurring
now.
There is another issue faced by those in a residential
care setting and this relates to the "ordinary residence"
rules. When a patient has, through the care provided in specialist
residential accommodation, become more able to live independently,
the rules of ordinary residence create bureaucratic difficulties
when people wish to leave residential care. Such patients may
have been in residential accommodation some time and often wish
to move to supported housing in that area.
The consequence of the ordinary residence rules
is that the duty to fund their needs now falls on the receiving
local authority, rather then the one who placed the patient in
the residential accommodation. This can create an unfair burden
on local authorities where these rare specialist centres are located
and, for the patient, commonly leads to extensive delays and uncertainty.
There are only negative consequences flowing
from these problems. Whilst the move to much cheaper supported
housing is blocked and delayed, the overall costs to the State
are increased. Equally, for the patients used as pawns in this
way, their right to live independently and self-manage their condition
asserted by Government policy as laid out in 2006 in the White
Paper "Our Health, Our Care, Our Say" and elsewhere
is denied.
Wasted Money, Wasted Lives recommended that
Government bridge the gap between policy and practice by developing
guidance to local authorities to ensure resources follow the individual
when moving from residential care into supported housing. This
would avoid both negative consequences described in the previous
paragraph at a stroke.
Intervention by Government now would eliminate
these wasteful inequities and lay a much firmer basis for sensible
residential accommodation commissioning in a future under the
White Paper reforms.
HOW WILL
THE NEW
ARRANGEMENTS STRENGTHEN
COMMISSIONERS AGAINST
PROVIDER INTERESTS?
How will vulnerable groups of patients be provided
for under this system?
Some method of oversight from the National Commissioning
Board needs to be provided to ensure that low-volume on a local
level does not equate to a lack of priority.
TRANSITIONAL ARRANGEMENTS
Who will drive innovation during the transitional
period?
We perceive a very real danger that innovation
during the transitional period will stall as Government and relevant
agencies strongly focus on delivering the reforms. These very
substantial changes will take several years to be fully functional
and there will be a period following that when new evidence will
have to be gathered to demonstrate any failures. We are discouraged
by the discontinuance of Departmental support for improving epilepsy
commissioning and further discouraged by the inability of the
responsible Minister for long-term conditions Paul Burstow to
meet with us to discuss these issues.
SPECIALIST SERVICES
What arrangements are proposed for commissioning
of specialist services?
The National Commissioning Board will retain
commissioning responsibility for defined specialised services.
For example, surgery for children with epilepsy is currently included
in this list. Consideration should be given to including all children's
and some adult services for epilepsy in order to drive up standards
on a national basis before devolving them, where appropriate,
to local consortia. Despite concerns that current specialised
commissioning has been failing children with epilepsy, a revitalised
national commissioning strategy could be the way to drive improvements.
October 2010
APPENDIX
COPY OF LETTER OF JULY 2009 FROM HEALTH MINISTER
ANN KEEN MP TO STRATEGIC HEALTH AUTHORITIES
SHA LONG-TERM
CONDITIONS LEADS
July 2009
Dear
I would like to draw to your attention the report
Epilepsy in England: Time for Change, which was published by Epilepsy
Action earlier this year.
Epilepsy in England: time for change, which
is available on Epilepsy Action's website at www.epilepsy.org.uk/timeforchange,
reports on the results of a survey of acute trusts and Primary
Care Trusts (PCTs) in England as well as a survey of people with
epilepsy. The results of these surveys revealed wide variations
in the provision of epilepsy services, as well as variations in
the collection of information and the quality of care provided.
Particular problems indentified in the report
included:
— access to specialists in epilepsy;
— waiting times for a first appointment;
— access to diagnostic tests; and
— the lack of care plans and transition
services.
These problems principally stem from low levels
of implementation of the National Institute for Health and Clinical
Excellence (NICE) clinical guideline on the diagnosis and care
of children and adults with epilepsy.
Epilepsy in England: time for change follows
an earlier report, Wasted Money Wasted Lives, published by the
All-Party Parliamentary Group on Epilepsy in 2007. This report
raised similar issues in terms of variable implementation of the
National Service Framework (NSF) for Long-term Conditions and
NICE guidance and highlighted the social, economic and personal
cost of not implementing this guidance.
I know that many PCTs are working towards full
implementation of the NICE clinical guideline, as well the NSF
for long-term conditions, and I would like to reinforce the importance
of the NICE guidance and NSF in delivering high quality, accessible
services to this client group. Investing in the services envisaged
in both the NSF and NICE guidance will help people live more independently,
improve their quality of life and be a more cost effective way
of providing services.
The Epilepsy Action report's recommendations
are directed at NHS organisations as well as the Department of
Health. I hope that, with your partners, you give appropriate
attention to the messages contained in the report to ensure better
outcomes for service users and their carers.
Thank you in anticipation of your support for
this important area of work.
With best wishes,
Ann Keen
Parliamentary-Under Secretary of State for Health
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