Information prescriptions
Open Door - February 2008 pages 14-15
Lynn Fox, Information Officer
MS Trust
The National Institute for Health and Clinical Excellence Guidelines on MS state that "People with MS should be enabled to play an active part in making decisions in all aspects of their MS health care by being given relevant and accurate information about each choice and decision."[1]
However, a recent study found that 80% of people with MS wanted to take an active role in treatment decisions but had insufficient information to allow them to do this.[2] This finding was supported by the recent survey carried out by the Neurological Alliance in conjunction with Ask About Medicines and the ABPI that is featured elsewhere in this issue.
The government white paper 'Our health, our care, our say' made a commitment to improve access to appropriate information. To achieve this, by the end of 2008 an Information Prescription will be given to everyone with a long-term condition who has a consultation with a health or social care professional.
"Our vision is that everyone with a long-term condition or social care need will be guided to reliable sources of information to allow them to feel more in control, better able to manage their condition and engage with the healthcare system and stay independent".[3]
Shared decision making between a person with MS and their health or social care professional can make a lasting and significant difference to health care outcomes. It is now recognised that time should be set aside at each consultation to discuss and assess the information needs a person has. The concept of an Information Prescription is a practical way of supporting this and raising the importance of information in consultations where time might be limited.
But what will be contained in an information prescription? Who will you receive this from and what will it look like? As yet the form is not known. To ensure a successful design and method of delivery there are currently 20 pilot projects throughout the UK trialling a variety of approaches to developing and delivering Information Prescriptions using different settings, by different professionals and to different groups of users. The full report of the study will be launched in March and we will let you know the findings and what you can expect to see.
References
National Institute for Clinical Excellence.
Multiple sclerosis: management of multiple sclerosis in primary and secondary care.
NICE Clinical Guideline 8. London: NICE; 2003.
Heesen C, et al.
Informed shared decision making in multiple sclerosis - inevitable or impossible?
Journal Neurological Sciences 2007;259:109-117.
Department of Health.
Information prescriptions: the wider context.
Presentation by Harry Cayton, National Director for Patients and the Public. 22 March 2007.
Getting the most from appointments
Dialogue between a person with MS and their health or social care professional is critical. You may need to ask questions to further understand what has been said or the information that you have been given. If you have a limited amount of time with your health professional it can be useful to think about questions in advance and also to write down the questions in order of importance.
In an attempt to ensure a more equitable partnership in sharing decision making the NHS has launched a leaflet called Questions to Ask. Receiving and understanding the right information during an appointment is the key to being fully involved in decisions about treatment and care. Questions to Ask supports this by helping people with general questions during a consultation, such as "Are there any side effects or risks of treatment?" and "How will I know if the treatment is working?"
A list of questions specifically about neurological conditions has been devised by the Brain and Spine Foundation.
Your local pharmacist is a knowledgeable resource for information about medicines, their possible side effects and how different medicines may act together. The Ask about Medicines Campaign has also developed questions about medications.
These questions have been collected in the Living With MS section of this website
The MS Trust Information Service can also offer information that will help you have a more informed discussion with your neurologist, MS nurse or other health and social care professional.
In addition to the MS Trust Information Service there are two publications that can support you in seeking information:
- Finding and using information about health and medicines - published by Ask About Medicines
- Getting the best from neurological services - published by Neurological Alliance
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