Jewish Health

Information and support

Most people with a chronic health problem will, over time, become very knowledgeable about their condition and how best to manage it. Much more than in the case of acute illness, patients are likely to become experts in their own right and gather information from a wide range of sources. However, when the condition is relatively rare in the general population - as is the case with many health conditions covered on this website – it can be difficult to find good quality information about it.
Several people we talked with said they had been dissatisfied with the amount and quality of the information they received from health professionals. In some cases, this was due to GPs or consultants not having encountered anyone else with the condition and therefore being ill-equipped to advise their patients. In these cases, health professionals seemed to learn more from their patients than their patients from them.
People differed in how much they felt they needed to understand about their condition to make informed choices. A few liked to take an active role and read up on things before attending appointments with health professionals. A couple of older people said they tried to educate themselves about the medical science around their health problem as best as they could. But they struggled to understand the more complex aspects and were happy to trust their doctors to make the right treatment decisions for them. Having a good relationship with a trusted health professional was more important to them than knowing all the medical ins and outs.
Several people talked about the importance of getting the right amount of information at the right time. This was particularly the case when the diagnosis had come as a shock. People sometimes felt swamped with too many or the wrong kind of details. Busy NHS settings and rushed appointments could also make it harder to take in information, digest it properly and have the chance to ask questions.
 
Most people used the internet at some stage to find out more about their condition and to make contact with other patients. However, many of them acknowledged that browsing the web had its perils and it was easy to feel overwhelmed by scary details. A few people had been cautioned against trying to look things up on their own initiative by doctors or family members.
 
Nevertheless, the internet was seen as a valuable resource by many people. Besides providing up to date information, it enabled them to make contact with others - sometimes in different countries - who had the same rare conditions and share their experiences for mutual support. A couple of people had been able to seek Rabbinic support round the clock via a website.
 
Those people without internet access managed to find information through their local library and were able to find books providing a Jewish perspective on health issues. Some of those who were active in their religious community managed to find information and make contact with others who had their condition through community links.
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A few people had become members of organisations that provided specialist support and advocacy for their condition and thereby gained access to further information. Many organisations provide a range of leaflets and booklets free of charge. Beyond that, membership benefits sometimes include regular newsletters or magazines, invitations to meetings, expert talks and conferences.
 
Some organisations run support groups where people can meet in person to talk to others with the same condition. Some also operate telephone helplines.

Last reviewed September 2015.

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