Evidence submitted by the Joint Epilepsy
Council of the UK and Ireland (NICE 40)
1. INTRODUCTION
1.1 The Joint Epilepsy Council of the UK
and Ireland (JEC) represents 22 epilepsy organisations operating
in England, Wales, Scotland, Northern Ireland and the Republic
of Ireland. Our mission is to promote improved standards of and
access to integrated services in health, education and social
care for people with epilepsy and their carers and to increase
epilepsy awareness amongst politicians, civil servants, service
providers and the general public. The JEC includes representation
from patient organisations and the International League against
Epilepsy (ILAE) representing clinical specialists with an interest
in epilepsy.
1.2 Over 456,000[78]
people have epilepsy in the UK. It is the most common serious
neurological condition and is a major long-term disability with
similar numbers of people affected as insulin dependent diabetes.
1.3 The JEC welcomes this opportunity to
submit evidence to the Health Committee relevant to the inquiry
into aspects of the work of the National Institute for Health
and Clinical Excellence. Areas of particular interest include:
— Why NICE's decisions are increasingly
been challenged.
— NICE's evaluation process, and whether
any particular groups are disadvantaged by the process.
— Whether public confidence in the
Institute is waning, and if so why and how.
— The speed of publishing guidance.
— Comparison with the work of the Scottish
Intercollegiate Guidelines Network (SIGN).
— The implementation of NICE guidance,
both technology appraisals and clinical guidelines (which guidance
is acted on, which is not and the reasons for this).
2. SUMMARY
2.1 The JEC fully supports the work of NICE
in respect of people with epilepsy, their families and people
bereaved through epilepsy. Our experience of working with NICE
on the National Audit of Epilepsy Deaths 2002 and the NICE Guidelines
on the Epilepsies 2004 was particularly positive. These initiatives
from NICE represented the first serious attempt by policy makers
to address the historically low standards of care for people with
epilepsy and to respond to the significant loss of life from three
seizure deaths a day. The speed of publication of guidelines has
been appropriate to the work necessary to produce important work
of this kind. Irrespective of the problems of implementation of
guidance highlighted below, the work by NICE has been invaluable
to the epilepsy community. For the first time people with epilepsy
and people bereaved by SUDEP (Sudden Unexpected Death in Epilepsy)
have a benchmark of care which they can campaign for and can use
in complaints when services have failed. This is real progress,
but not progress likely to be disseminated by the mainstream media.
2.2 The key issue in this area as far as
the JEC is concerned is the evidence of non-implementation of
NICE Guidelines.
2.3 The main reason for non-implementation
of NICE Guidelines has been the absence of any plan (national,
regional or local) to address poor levels of knowledge in clinicians
managing the medical care and communication needs of many people
with epilepsy. There is a critical shortfall in clinicians and
nurses specialising in epilepsy and this treatment gap has not
been addressed by the development of formal clinical networks
that can make the best use of the expertise available in a local
area.
2.4 There is evidence that the current shortfall
is critically affecting the level of care provided to people with
epilepsy, including increased levels of epilepsy related deaths.
A consensus group of experts and the voluntary sector recommended
in 2004 that the workforce requirements to implement the NICE
Guidelines on epilepsy would require in the short term an increase
in the number of epilepsy specialist nurses from 140-600. The
consensus group also recommends that in the medium term the Government
should increase the number of adult neurologists from 352-1,400,
paediatric neurologists from 75-150, learning disability specialists
from 340-500 and an increase in neuroradiologists from 110-160.
Clearly NICE Guidelines in this area may be perceived as failing
because of current workforce capacity and current resources for
training.
2.5 The NICE Guidelines on epilepsy provide
an excellent basis for GPs and specialists to provide high standards
of treatment and care for people with epilepsy. In addition, the
existence of evidence-based standards of good practice provides
people with epilepsy and bereaved relatives with an opportunity
to fight to prevent medical accidents in the future.
3. WHETHER PUBLIC
CONFIDENCE IN
NICE IS WANING
3.1 The JEC's view is that the epilepsy
community as a section of the public remains fully confident in
the work that NICE has done to date in the field of epilepsy.
If public confidence is waning this may be due to concerns about
the non-implementation of NICE guidelines at a local level and
due to media stories which have not tended to focus on the positive
work that the institute does.
3.2 Public confidence may also be waning
due to decisions to refuse the funding of certain treatments.
Epilepsy medications are very low cost relative to many other
new drugs and cost effective given that medication can achieve
seizure freedom in seven out of 10 patients. The epilepsy community
is very positive about the NICE guidelines on diagnosis and treatment
and the technology appraisals, but very concerned that in spite
of the cost effective nature of this guidance there are serious
problems of implementation.
3.3 The Chief Medical Officer has confirmed
that epilepsy has suffered historical neglect and lack of investment
compared with other long-term conditions. [79]As
a result there is a serious treatment gap identified since 1950
in six national reports. Seven out of 10 people with epilepsy
should be seizure-free on appropriate first-line medication but
currently only five out of 10 people are estimated as achieving
this. This means two out of every five people experiencing seizures
could be seizure free, but are not. In total over 80,000 people
with epilepsy are having seizures that could be prevented if they
had access to good epilepsy services. [80]
3.4 In 2000 NICE commissioned Epilepsy Bereaved
to project manage a UK-wide National Clinical Audit on Epilepsy
Deaths 2002. [81]This
Audit involving the medical Royal Colleges found that up to 400
of 1,000 epilepsy deaths each year are potentially avoidable through
improved management of seizures. The Findlay Fatal Accident Inquiry
2002 also highlighted the need for implementation of national
guidelines on epilepsy as a key preventative strategy in respect
of SUDEP. SUDEP mainly affects young people and can affect anyone
with epilepsy who is not seizure-free.
3.5 It was acknowledged by the Chief Medical
Officer in his 2001 report that previous guidelines related to
epilepsy had been ignored and the hope was that the NICE Guidelines
on epilepsy would address the deficiencies in the previous guidelines.
The evidence below suggests that there have been deficiencies
in the implementation of NICE Guidelines.
3.6 Prior to the NICE Guidelines a Family
Health Services Authority tribunal ruled that a GP could not be
in breach of standards because there were no recognised standards
of care for people with epilepsy. Focus groups of families bereaved
by epilepsy meeting on 18 February 2007 reported positively how
they were using the NICE Guidelines to highlight lessons that
can be learnt from SUDEP deaths through educational events with
clinicians and also through the NHS complaints system. These levers
for achieving change are particularly important in a policy context
where national waiting list targets do not reflect clinical priorities
for people at risk from SUDEP.
4. THE SPEED
OF PUBLICATION
OF NICE GUIDELINES
4.1 The JEC considers that the speed of
publication of the NICE Guidelines in the field of epilepsy was
appropriate to the amount of work involved in the production of
the Guidelines.
5. THE EVALUATION
PROCESS
5.1 JEC is positive about the evaluation
process and considers that no group was disadvantaged. There were
four patient representatives who were members of the Guideline
Development Group and they reported very positively on their experience
on the Group.
6. IMPLEMENTATION
OF NICE GUIDELINES
6.1 Experts and members of the epilepsy
voluntary sector met in November 20045 to review various survey
findings characterising the current state of epilepsy care and
to compare against standards outlined in the (then) recently published
NICE epilepsy guideline. [82]
6.2 The expert consensus was that services
fell well short of the standards set out by NICE in terms of waiting
times for specialists and diagnostic tests, and research findings
indicated that little was likely to change in the next four years.
The main barriers reported by PCTs to implementation of NICE Guidelines
were financial and other national priorities. The expert group
was aware that the shortage of neurologists and other epilepsy
specialists was not going to improve overnight and called for
a number of short-term solutions.
6.3 In the medium-term the group believed
that addressing this shortage is the principal change needed to
ensure epilepsy services improve sufficiently to achieve the standards
set by NICE. The group called for a national plan to increase
the number of epilepsy specialist nurses from 140-600 across all
epilepsy disciplines (adult, paediatric, and learning difficulties)
within two years. Nurses play a critical role in treatment monitoring,
offering advice and support to patients and families, and education
for patients and GPs, therefore providing much needed support
to people with epilepsy, the primary care team and to neurologists.
In the medium term (next five to 10 years) the group called for
the Government to immediately put in place a programme to increase
the number of adult neurologists from 352 to 1,400; paediatric
neurologists from 75-150; learning disability specialists from
340-500; and neuroradiologists from 110-160, all within five to
10 years. This statement was supported by over 100 epilepsy clinicians,
seven voluntary sector groups and 115 MPs (EDM 685, 2005).
6.4 Table 2 below sets out JEC estimates
of the existing resource and demand and the estimated cost per
annum of meeting demand. [83]
| Existing Resource
| Demand | Cost Per Annum
|
| | |
|
| Access to a GP with basic knowledge of epilepsy
| Poor knowledge base | Epilepsy Training—
One course per year in
each PCT
| £700,000 |
| A seamless patient journey between GP and hospital
| Some informal clinical
networks | An epilepsy "Tsar" or
lead in each region
| £750,000 |
| Access to a specialist nurse | 150
| 600 | £12,600,000 |
| Access to a paediatric neurologist with an interest in epilepsy
| 70 | 150 | £8,000,000
|
| Access to a consultant neurologist | 352
| 1,400 | £104,800,000 |
| Access to a clinical neurophysiologist |
75 | 248 | £4,325,000
|
Total | |
| £131,175,000 |
Footnote: recommended numbers of neurologists, paediatric neurologists
and neurophysiologists are taken from the Association of British
Neurologists, British Paediatric Neurologists Association and
Association of British Clinical Neurophysiologists.
- Focus groups held on 17 March 2007 with families bereaved
through SUDEP included reports from recently bereaved families
of non-compliance with NICE guidelines. These reports included
withdrawal of funding for
- A&E emergency medications; problems of access to specialists
with an interest in epilepsy; deaths of young people whilst waiting
for investigations and treatment or access to specialist nurses.
Families also reported that clinicians were not informing patients
about SUDEP and that deaths had occurred in people who had not
started or who had stopped their medication. These deaths included
women who had experienced side-effects of medication on pregnancies
but had no preconception counselling or information about SUDEP
and the importance of medication for controlling seizures.
6.6 A recent Epilepsy Action survey in 2007 revealed
that a number of NICE recommendations are not being implemented.
A total of 185 responses were received and the results were interpreted.
The NICE guidelines recommend that people with suspected epilepsy
should be referred to a specialist within four weeks; however,
only 27.4% of respondents to the survey said that they had been
seen within four weeks.
6.7 NICE recommends that all individuals with epilepsy
should have a comprehensive care plan that is agreed between the
individuals, their family and/or carers as appropriate, and primary
and secondary care providers. The survey by Epilepsy Action revealed
that 75% of respondents did not have a care plan.
6.8 The NICE guidelines on epilepsy recommend that "women
with epilepsy and their partners, as appropriate, must be given
accurate information and counselling about contraception, conception,
pregnancy, caring for children, breastfeeding and menopause."
Epilepsy Action carried out an `Ideal World' survey in 2002, which
sampled girls and women with epilepsy to gather their opinions
and experiences of their information needs in relation to their
epilepsy treatment. The survey results show that women are not
receiving important information about their condition and the
possible effects of anti-epileptic medication. Only 28% of women
aged between 19-34 have received information about oral contraception
and epilepsy medication and only 46% of women with epilepsy who
have had children had been told that their medication might affect
their unborn child, which implies that 54% of women who had been
through a pregnancy had not been given such information.
6.9 A paper, by I Minshall and D Smith, [84]published
in 2006 revealed that out of 610 people with epilepsy surveyed;
only 41% had been seen by a GP in the previous year.
6.10 Since 2004 there is evidence that although there
are a few PCT areas where progress has been made towards implementation
of the NICE guidelines on epilepsy, in many areas of the country,
services for people with epilepsy have remained or have become
more precarious.
Sharon Harvey
General Secretary
Joint Epilepsy Council of the UK and Ireland
March 2007
Submitted on behalf of: Brainwave—The Irish Epilepsy
Association, David Lewis Centre for Epilepsy, Enlighten—Tackling
Epilepsy, Epilepsy Action, Epilepsy Bereaved, Epilepsy Connections,
Epilepsy Research Foundation, Epilepsy Scotland, Epilepsy Specialist
Nurses Association, Epilepsy Wales, Epilepsy West Lothian, Fund
for Epilepsy, Gravesend Epilepsy Network, Gwent Epilepsy Association,
International League against Epilepsy (British Branch), The Meath
Epilepsy Trust, Mersey Region Epilepsy Association, National Centre
for Young People with Epilepsy, National Society for Epilepsy,
Organisation for Anti-Convulsant Syndrome, Quarriers, St. Elizabeth's
Centre.
78
Epilepsy prevalence, incidence and other statistics. Joint
Epilepsy Council: Leeds. 2005. Back
79
The Annual Report of the Chief Medical Officer of the Department
of Health 2001, DH, 2001. Back
80
Epilepsy prevalence, incidence and other statistics. Joint
Epilepsy Council: Leeds. 2005. Back
81
Hanna NJ et al, The National Sentinel Audit of Epilepsy-related
Death, London; The Stationery Office, 2002. Back
82
http://www.epilepsy.org.uk/campaigns/lobbying/consensus/index.html Back
83
Epilepsy, the case for, the Joint Epilepsy Council, 2004. Back
84
Minshall I, Smith D. The development of a city-wide epilepsy register.
Seizure (2006) 15, 93-97. Back
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