Patients & Carers meeting March 2015

This month we had to cancel our meeting as we had to attend a very important meeting along with some of our patients & carers with the UK commissioning group NCG. This group funds the National Aspergillosis Centre (NAC) and has a committment to listen to and involve our patients in many of our decision making processes in connection with the running of NAC.

 

National Commissioning Group (NCG) want to hear about our achievements for the year on an annual basis via a face to face meeting and this year it happened to be on the 6th March.

Our disappointment was offset by the request to include the views of our patients & carers in our presentation to the commissioners – a real sign that your views are as important to the people that fund the service as anyone else’s view. Five patients & carers volunteered to represent your views at the meeting and raised several issues that may well not have been aired before, each drawing a considered response. Jean travelled from Birmingham and Julie from Bexhill-on-Sea spoke at length about how their lives had been changed by aspergilloma and the benefits they had gained from using NAC. They also reinforced opinion stated elsewhere that it is difficult for some to travel the distances needed to get to NAC. Another comment from Keith in Bristol provided an excellent example of how difficult some are finding it to get a referral to NAC. This triggered an in depth conversation and the Commissioner made several points;

1. We are to explore ways to provide a more locally accessible service for the South East though there are still major difficulties to resolve,

2. Some GP’s might not be aware that NAC services are free of charge to GP practices for those with chronic pulmonary aspergillosis (not ABPA) – increase awareness on that point,

3. A particular train company offers free transport to other national service centres so might be prepared to help our patients too – commissioner is looking into it for us.

None of these points would have been covered at the meeting without our patients input. This is a prime example of how your input helps us provide a better service so many thanks to Julia, Jean and Keith for their hard work on behalf of all of us.

 

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