Taking control
The information needs of people with neurological conditions
A joint campaign by the Neurological Alliance, Ask About Medicines and the Association of the British Pharmaceutical Industry
Research published in December 2007 reveals people with neurological conditions are being left in an information void and not receiving adequate care
Research published jointly by the Neurological Alliance (of which the MS Trust is a member), 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.
The research shows that the great majority (82%) of the 10 million people with neurological conditions in the UK 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. 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.
Nicola Russell, Director of Services at the MS Trust and a Trustee of the Neurological Alliance, said "Over 10% of the sample used in this research were people with MS. It demonstrates yet again that information is not being provided to people at the time of diagnosis or during their life with the condition. Information is pivotal to enabling people with MS to take control of their condition and plan for the future and we hope that the Department of Health and the NHS will take note of this research and work with health professionals to improve the situation".
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, or the NICE MS Management Guidelines. 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. 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.
Although someone in the UK is diagnosed with a neurological condition every minute 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.
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.
Sources of information:
- Survey Monkey conducted the 'Taking Control' survey among 1001 people with neurological conditions on behalf of the Neurological Alliance, November 2007.
- Neuro Numbers: a brief overview of the numbers of people in the UK with a neurological condition. - available from the Neurological Alliance website.
A short video on the study
Links
- The Neurological Alliance
- A campaigning group of over 50 national and local third sector organisations fighting to improve services for people with a neurological condition.
- Association of the British Pharmaceutical Industry (ABPI)
- 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.
- Ask About Medicines
- An independent campaign to increase people's involvement in decisions about their use of medicines.
- More about the Long-term (Neurological) Conditions National Service Framework (NSF)
- More about the NICE MS Management Guidelines