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.
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 email@example.com.
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.