Red flag tool for GP’s

[Barry52]

Good morning MND connect,

My GP has asked me if I would present a patient perspective about living with MND. The audience will be up to 50 medical and health care professionals.

I view this as an opportunity to promote awareness of the disease and the work done by the MNDA. I would like to use the red flag tool to highlight delays in diagnosis. I request paper copies (i.e. the booklet that was produced a few years ago) and is it available as a presentation format so that I can show it on a screen?

I did a similar exercise last year with a medical group from a different county and although I needed to use my speech app for the presentation, I was still able to take questions from the floor.

Barry52

[Terry]

Hi Barry;

Don't know if this is what you are after????? Get some tech savey friend to help you on the day to take some of the load off of you if they can stay quite.

https://www.mndassociation.org/wp-content/uploads/2015/02/red-flag-pdf.jpg

https://www.mndassociation.org/wp-content/uploads/2015/02/red-flags-final-2.pdf

Love Terry

[Barry52]

Thanks Terry,

I can use this in my presentation.

Barry x

[Sportingmac]

Hi Barry,

I have presented similar to both my local CCG and to a large group of Hospice volunteers (only yesterday for the volunteers). I didn't use the red flag stuff - I made it personal - an emotional rollercoaster for the audience. I also highlighted the issue of hospitalisation for emergency care - the journey form ambulance to ward and where it all goes very wrong. My view is that that knowledge of MND and how it actually affects each of us gets lost somewhere in that journey and we end up with inappropriate care (or total lack of it). I call on the evidence of two of my fellow sufferers who both had a very bad experience in hospital. Both sadly died very soon after admission - thankfully after being transferred to the local Hospice - where 'care' was given.

I don't blame the nurses - just their lack of basic nursing skills when treating a MND patient. How many times have you seen - 'don't give me oxygen' on the care leaflet - but how many actually were given it.

So please use your personal story and not just rely on MND documents - nursing staff haven't got the time to read a 20 page document.

Kind regards

Chas

[Barry52]

Hi Chas,

I have my personal story prepared and also examples of other people’s experiences. I want to use the 2 page leaflet to highlight the indicators for GP’s to make urgent referrals to neurologists.

Best wishes,
Barry

[Kayleigh]

Hi Barry,

I hope everything goes well with your presentation - it sounds like it's going to be a very interesting and informative! I think that all GP's and other healthcare professionals in the U.K. would benefit from seeing it. Although there is information on the MNDA website for them to read, I think that the delivery and content of your presentation is going to have a very positive and lasting impact on the audience, and it will also include some very powerful messages that they won't forget.

I think you are brilliant Barry! - many thanks for all your hard work and for all that you do to raise awareness of MND.

Kayleigh x

P.S I think it would be great if your presentation could reach a wider audience - if it is being videod, maybe it could be put on the Mnda website?

[Barry52]

Kayleigh I will ask my GP if there is a facility to video the seminar. Fortunately the medical professionals have now realised the benefits of having a patient perspective.

Following early retirement and about a year getting my head around MND I realised that I could drown in self pity or get out and make a difference. Being involved with 2 branch committees and the research panel in Sheffield gives me huge satisfaction and the knowledge I have gained should be shared. We all know the benefits of this forum and whilst the MNDA website has a huge amount of information I don’t believe the medical professionals have time to research it.

I am fortunate that my progression is slow but my biggest challenge now is the lack of speech. Thankfully speech apps are great but they don’t allow for spontaneity.

Of course life is not all about MND and I am still able to fit the odd holiday in so if you don’t hear from me during half term I am on a beach enjoying some winter sunshine.

Love and hugs to to all.
Barry

[Kayleigh]

Hi Barry,

I hope you and your family have a wonderful time on holiday. Such a good idea to jet-off for a holiday in the sunshine at this time of year- the cold weather we are having in the UK seems to be lasting forever - hopefully we will get some warmer weather here soon!

Kayleigh x

P.S Will it be your holiday in Egypt? - if it is, please say 'hi' to my friend Humphrey the camel, if you see him (he's the one with no humps!!LOL)

[Deb]

Well Done Barry, That's such a worthwhile thing to do and I know the medical professionals will value your input.

Just before I was diagnosed we went on holiday with a very close friend who is a GP. We never talk about medical issues because it wouldn't be fair on him but he said afterwards that MND had not occured to him and he had just spent a week with me. It must be hard for a GP in a ten minute consultation so promoting awareness is really important. My own GP did refer me to a neurology appointment after I had seen an oethapeadic ( I think ) consultant and they have been very supportive.

Have a fantastic time in the sun... I am very tempted. I do feel vulnerable flying but I have always been looked after and it is worth it.

Love Debbie x

[Barry52]

Hi Debbie,

I hope your fear of flying doesn’t prevent you going away. My wife and daughter will be keeping me safe.

Kayleigh I will say hello to Humphrey but I won’t get in the saddle. When I Iast rode one in India it was on the border with Pakistan and the guide had a gun. I am looking forward to a good massage as is my daughter who spends over £100 for 3 sessions.

Best wishes,
Barry

[MNDConnect]

Hi Barry52,

Apologies for the delay in responding to your post.

The Red flag diagnosis tool for GPs is available as a hard copy, we can certainly arrange for a few copies to be sent to you. Unfortunately, this isn’t available as a presentation format, however we do have an Understanding MND training video for heath and social care professionals. This video features people with MND , sharing their experiences of living with the condition. You can view the video by accessing the following link to our website https://www.mndassociation.org/forpr...raining-video/ This video is also available on USB or a DVD stick.

If you would like any of the above resources to be sent to you, then please do let us know.

I do hope that this is helpful.

We wish you all the very best for your presentation.

Kindest regards,
Prachi

[Barry52]

Thank you Prachi for providing the link to this video. I have watched it and I will certainly point out the link when I present to the health care professionals.

Regards,
Barry