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Wednesday,December 12th, 2007
According to new research revealed today the great majority (82%)
of the 10 million people with neurological conditions in the UK1,2
such as multiple sclerosis and Parkinson's disease do not have as
much information as they want about their condition. Furthermore,
four in ten (41%) are not treated with respect by healthcare professionals
and less than half (44%) believe they are receiving adequate care.1
Lack of information means patients are often denied access to care
that could improve their quality of life and slow down the progression
of their condition. Yet research published jointly by the Neurological
Alliance, the Association of the British Pharmaceutical Industry
(ABPI) and Ask About Medicines shows that only half (51%) of people
with neurological conditions understand their diagnosis and 70%
are given no advice at diagnosis about where to seek further information
on their condition.1
Launching the campaign Dr Kirstine Knox, Chair of the Neurological
Alliance commented: "For people living with conditions such
as motor neurone disease there is no cure on offer, so access to
information that enables them to take control of their condition
and plan for the future is critical. However, this research reveals
that all too often people with neurological conditions are left
isolated in an information void, missing out on treatments, support
and reassurance that could really improve their lives."
The 'Taking Control' survey highlights how the UK healthcare system
is failing people with neurological conditions by not ensuring access
to appropriate information and specialist advice as set out in the
National Service Framework for Long-Term Neurological Conditions.
In particular, only 11% of people with neurological conditions surveyed
received very useful information from their GP and over a third
(36%) received no information at all.1 Furthermore, only a third
(34%) feel confident asking questions about medicines for their
condition despite the fact that they do not know how to find information
about medicines for their condition.1
Although someone in the UK is diagnosed with a neurological condition
every minute2 and this figure is on the rise, accessing advice from
specialist doctors and nurses remains a major challenge. More than
4 in 10 (42%) of those surveyed said they did not have the name
and telephone number of a specialist team whom they could call to
ask questions. Furthermore, 60% had not seen a specialist nurse
in the last year.1
Melinda Letts, Director of Ask About Medicines said: "Our research
shows how important the information provided by patient organisations
and the opportunity to speak to other people with their condition
are for people with neurological conditions. There is no excuse
for not providing patients with contact details of a relevant patient
organisation at diagnosis."
The Neurological Alliance, ABPI and Ask about Medicines have joined
forces to launch a joint campaign calling for the people with a
neurological condition to expect, as a minimum:
- To be treated by health professionals who attach priority to
giving information to patients.
- To leave the appointment at which they receive their diagnosis
with an "information prescription" including contact
details of a relevant patient organisation.
- To have a single, well informed and accessible point of contact
for on-going information about their condition and treatment.
Dr Richard Tiner from the ABPI said: "The effective provision
of information is vital for partnership between healthcare professionals
and patients - with effects ranging from the psychological benefits
of accepting and understanding what is happening to them, to empowering
people to actively share in their care. The demand for information
from people with neurological conditions is high and it is critical
that those affected are involved in the management of their condition.
"
The Neurological Alliance, ABPI and Ask about Medicines are hosting
a summit meeting in 2008 to develop a plan to address these targets
involving people with long term neurological conditions, health
professionals, commissioners, healthcare managers and policy makers.
Ann Keen MP, Minister of Health, has been invited to chair this
summit.
For more information or to set up an interview with spokesperson
or case study please contact: Charlotte James. Tel - 07771
568915.
References:
1. Survey Monkey conducted the 'Taking Control' survey among 1001
people with neurological conditions on behalf of the Neurological
Alliance, November 2007.
2. Neuro numbers: a brief overview of the numbers of people in the
UK with a neurological condition. Neurological Alliance website
www.neural.org.uk - accessed
November 2007.
NOTE TO EDITORS
In addition to the 'Taking Control' survey a series of focus groups
were held with 23 neurology patients and their carers to find more
about their experiences in accessing and understanding information
about their illness.
A short video on the study featuring patient views can be viewed
at the following link: http://www.youtube.com/watch?v=PfsLtsZQ53w.
The Neurological Alliance (www.neural.org.uk)
is the campaigning group of over 50 national and local third sector
organisations fighting to improve services for people with a neurological
condition.
The Association of the British Pharmaceutical Industry (www.abpi.org.uk)
is the trade association for more than seventy five companies in
the UK that produce prescription medicines. As part of their role
they have encouraged Datapharm to develop medicines information
for patients which is available online at www.medicines.org.uk.
Press contact at the ABPI is Richard Ley on 020 7747 1410, mobile
07715 169727
or email rley@abpi.org.uk.
Ask About Medicines (www.medicines.org.uk)
is the independent campaign to increase people's involvement in
decisions about their use of medicines.
The Long-term (Neurological) Conditions National Service Framework
(NSF) was launched in March 2005 and aims to transform the way health
and social care services support people to live with long-term neurological
conditions. Unfortunately it came with no targets and no budget
and so far implementation has been very slow. Key themes are independent
living, care planned around the needs and choices of the individual,
easier, timely access to services and joint working across all agencies
and disciplines involved. This NSF should be a key tool for delivering
the government's strategy to support people with long-term conditions
outlined in the White Paper Our health, our care, our say and the
NHS Improvement Plan: Putting People at the Heart of Public Services.
It applies to health and social services working with local agencies
involved in supporting people to live independently, such as providers
of transport, housing, employment, education, benefits and pensions.
For the 57 organisations that make up the Neurological Alliance
achieving implementation of the NSF is a number one priority.
For further information, please contact:
Richard Ley (work) 020 7747 1410 (mobile) 07715 169727
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