Context of Multidisciplinary Care in MND

[Admin_MND]

Understanding how best to deliver multidisciplinary care to people with MND

This study aims to develop guidelines on how best to deliver multidisciplinary team care in the UK to people with MND. Current NICE Guidelines (2016) do not outline the optimal structure and delivery of multidisciplinary team care clinics. A recent literature review has bought together the existing evidence to inform the context and format of the clinics. The findings from the literature review along with the results from this study will help to develop a consensus (agreement) on the best clinical practice in the delivery of multidisciplinary care team care for people with MND in the UK.

What does taking part involve?

Two rounds of questionnaires have already been completed which has allowed the team to reach a consensus on the majority of the items in the questionnaire. However, as usual in this process there are a number of items where an acceptable level of agreement has not been reached. Taking part will involve attending a virtual (online) event on Thursday 19 May between 11:00 - 15:00. During the event there will be opportunities to discuss the items from the questionnaires about multidisciplinary care team clinics to help reach an agreement about these items.

Who can take part?

• People living with MND
• Family members/carers of a person living with MND
• Healthcare professionals involved in the multidisciplinary care of people living with MND

All participants must have access to the internet and be able to attend an online event on Thursday 19 May between 11:00-15:00 Participants can be UK-wide (remote).

How can I take part?

To register for the event and take part in this study please click here.

[Bowler]

Is that 4hrs continuous involvement if so that seems an outrageous amount of time for many people living with MND. Many carers do not have the amount of free time in a day let alone in one chunk. Many people with MND would find that totally exhausting.

[denise]

I was going to register but no way can I be around for that amount of time.

[Lizzie]

I agree, it is a very long time to expect MND sufferers, or their carers to commit to a video call.
Secondly, those of us who are unable to speak would find the format disempowering. It’s hard using the Predictable app for any length of time without feeling left behind and exhausted.
Surely the format needs to be user friendly. Would it not be possible to answer the questions online at the user’s own speed?
Personally, I would get involved if the medium was more user friendly, but as a person with no voice, I would not consider a 4 hour video call.

[shelly21]

I can speak for about 30 mins and I would be unable then to speak re fatigue.

[Banned]

I keep wondering when all this research will make a blind bit of difference to the care we receive. This research is expensive.

[Admin_MND]

Morning all,

Thank you for your feedback - we have passed this onto the research team and will share their response once we receive it.

In the meantime, they have shared an agenda on their website here which we hope reassures you as you wouldn't be expected to speak for the whole period. They also have more information about how the study is being funded here.

Many thanks,

Forum Admin

[Admin_MND]

Hi all,

We've had a response from the research team behind the study and they have told us:

"We have agreed to alter the format of the day so that we can enable engagement. On that basis we will send out pre-recorded versions of the presentations in advance of the Consensus Event. That will give everyone time to listen and reflect at their own pace. There will be a facility for people to return their comments ahead of the Event and their feedback will be shared during the event to ensure inclusion. The feedback can be anonymous if people prefer that.

That eliminates a good portion of the event for people. We do however ultimately require as wide a representation as possible in the ‘room’ together at some point though on the day. The purpose of the chosen methodology is to hear a range of perspectives and discuss/debate as this can inform and alter views and lead to consensus. This will be arranged in facilitated small groups but people will not be expected to speak throughout. The voting also needs to take place on the day due to the technology although we did explore if there was any other way to do this.

Hopefully this facilitates wider engagement ensuring that we maximise the range of voices while recognising the challenges. If however there is more that people feel that could be done to make this easier then we would be very keen to listen to ideas and suggestions."

Hope that answers anyone's questions or concerns.

Forum Admin.

[Bowler]

Admin_MND thank you for passing on the concerns raised on the forum. Really good to see those concerned with the event have reacted in a positive way.