PROM Party

Prom Party

I am so thankful that I am from an era way before the import of the School Prom to the UK. As a bashful shy 15 yr old I simply would not have had the courage to ask my (in my own head) school sweetheart Pauline Stares to go to a Prom with me, never mind have a dance with her!!

However as a mature 60 something man living with WM I am now glad that I have found a PROM I can take part in without getting bashful or embarrassed at all!

Patient Reported Outcome Measures

You may have heard of our Rory Morrison Registry where medical data is submitted by our clinicians to help them further study our condition. Well running alongside that is PROMs which is a specific project for us WMers which collects data, from us, which will give our clinicians a ‘Real World’ understanding of the impact of WM on our daily lives. It covers such things as

Physical Wellbeing

Psychological Wellbeing

Social Wellbeing

Daily Life functioning

The project consists of you registering with PROM and then submitting a 3-monthly questionnaire online about the current impact of WM on your daily life. In doing this our clinicians are able to compile up to date information about how our treatment is affecting us (positive or negative) and identify any trends or patterns in any given type of treatment or regime.

Any data collected is identity protected so your personal information is secure.

Last week I spoke to Dr Aisha Patel, who runs the RMR and PROM project and she is very keen that we increase the numbers of WMers who are signed up to PROM as it will give her and her team a better chance of building up a more accurate picture of not only how we as patients are doing but also how our Clinicians can see how the various Treatment plans might be developed moving forward.

You can find more information about PROM and how to register on the website at www.wmuk.org.uk and go to PROMs for WM Patients.

I have signed up and am really pleased that my input along with that of many other WMers will inform Clinicians/Researchers/Drug researchers as they continually strive to find better treatments for us.

So your WM Community needs you!! If you are already registered thanks, but if not please consider signing up and play an important role in how our condition is dealt with.

By the way, in the absence of the School Prom, I eventually plucked up the courage to ask Pauline Stares out when I was a young 17 yr old soldier and despite buying her a bottle of Chanel No 5 as a gift she dumped me after about two weeks for an ‘older’ guy (19 yrs) who had a car!! The rest as they say is history.

Visit us at www.wmuk.org.uk for advice and information or email myself and Kat at support@wmuk.org.uk and we will try and help you.

You can also join us on Facebook at WMUK Community Support Group or follow us on Instagram at wmuk_info

Join me next time when I will be talking about Skill sets within our Community.

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Bob Perry

Bob has been living with WM for 6 years and is determined to raise the profile WM, helping patients advocate for themselves.