MDT meeting next week

[Worsleybird]

I have been given an appointment for an MDT meeting next week at the hospital. Bulbar for around 4 months, some twitching, on Riluzone.
I have no idea at all about what questions to ask re support, benefits etc. as still coming to terms with it all.

Can anyone help and advise me on what I should be asking please? Many thanks. Pam

[Lynne K]

Take your PIP form with you and ask if one of their team can fill it in for you and your Neurologist to write something on it and give a DS1500 to go with it. Other questions write down when they come to you. If you get too stressed to even ask questions you can hand your questions list over. So type it out in Word and print it off to make it easier to read. Good luck, Lynne x

[Worsleybird]

Thanks Lynne so the neurologist has the DS1500 or I have to get a copy from my GP to give to the neurologist ?

[Lynne K]

The Social Worker at my clinic did my PIP form, passed it to my Neurologist who did the DS 1500 and passed it back. I think that the Specialist Nurse also had input. So yes, your clinic ought to have DS1500s. If not I’d be very surprised and perturbed. Lynne x

[PeterPan]

If your neurology consultant, specialist nurse or GP completes and sends a DS1500 direct to the DWP, you don’t need to complete the 44 page PIP form at all.

The DS1500 allows you to apply for PIP under the ‘special rules’, which is really advantageous.

If you can’t get a DS1500, your local Citizens Advice is another body that could help you with that awfully long form.

Hope you get the DS1500 because it makes life much easier!

[Mary C]

Hi Pam
well the MDT is a multi disciplinary team that may be involved in your support going forward.

As already suggested writing a list is useful.

Questions are related to your concerns right now or for the future.For example I don’t know if your voice is affected but if it is or weaker you may want to discuss the help available?( voice recording ,communication aids,)
Members have mentioned benefits already but you might need a blue badge for parking?

Most importantly you need to know where your future support will come from ..for example I got referred to the local hospice , where the occupational therapist was based( As time progressed she advised on changes to my home ie wet room, provided equipment .Also I needed the physiotherapist for mobility advise , exercises and equipment.

Once you know where support network is it at least you know who to contact as things change (I wrote the telephone numbers in one book for myself and husband to have to hand)
You should be told how often you will have neurology check ups and who by and where.Some people need ongoing respiratory check ups with a consultant.

You certainly won’t be able to ask everything in one go as the journey changes .

On this forum members have lots of experience and consequently advise to share so don’t be shy in asking questions as I remember how daunting it can be when recently diagnose.

Good luck and hope you feel you get a good outcome from the meeting.It’s ok to express how you feel Pam as it’s your journey but team should assure you of ongoing support.

Best wishes
Mary xx