News from the seminar: the power of the patient story

14 February 2011

In my roles as a Consultant in Public Health and as the West Midlands Regional Lead for TB in the NHS, I have been involved with developing and supporting commissioning for TB services. I also work in partnership with the Health Protection Agency when TB outbreaks and incidents occur. I personally found The Truth About TB in your community awareness seminar in Birmingham, which was organised by TB Alert, to be very informative and inspiring—it allowed me to reflect and re-focus upon issues related to TB. 

Public Health professionals often become involved with the surveillance data considering TB from a population perspective. This can be especially true for those involved more with the commissioning aspects of TB services, rather than the Health Protection elements, reviewing the evidence base and patient pathways but often not pausing to reflect upon the patient experiences and the real people behind the population level data. The power of the patient story should never be underestimated. Used at the correct time and correct place this can be a very powerful tool. Indeed there is an evidence base surrounding story telling in the management world. 

Presenting at the West Midlands seminar was an individual who recounted their experiences of TB. This took a lot of courage, honesty and personal insight as they recounted their journey through TB. They described the failures along the way and the pivotal influence of a very supportive healthcare worker who supported them through their treatment. This level of support on an emotional basis is often not considered or captured in the development of the ‘evidence base’ or in the commissioning of patient pathways. This is where the development and empowerment of the third sector can have an invaluable contribution.

The NHS at the present time is experiencing significant structural changes including a shift of where commissioning is to be undertaken. Looking forward the role of TB Alert in supporting and developing the third sector will be crucial. Development of the third sector will raise awareness of the signs and symptoms of TB and contribute to patients being supported during their treatment. Clinicians involved with the future commissioning agenda may focus on diagnostic tests and DOTs but the emotional support required to support the patient in this long treatment also requires careful consideration. 

Patient support will not be the only role for the third sector from my perspective. Building upon the power of patient stories I feel that these can be used very effectively to shape and inform commissioning decisions. Working from within communities, the third sector will have the ability to influence the shape of the patient journey through ensuring these patient stories are heard by GP commissioning consortia and Health and Well Being Boards. This will be a vital future role to ensure that the patient truly is put at the heart of future TB services. 

Dr Helen Carter
Consultant in Public Health
West Midlands Regional Lead for TB