Urgent advice re: a communication device please

[Urchin]

Hello all

i am new here and my friend’s progress with MND has been very rapid. We are in Birmingham (UK)

she was only diagnosed in October and now only really has the use of one arm left now, and is losing her voice.

She is on waiting lists etc of course for things but we could just do with some quick advice on what we can buy now to help her communicate sooner rather than later.

if we bought an iPad is there a reasonably priced app or accessory we can get to help her communicate with her eyes when her voice goes?

she has been told to look around online and then her OT will apply for funding on her behalf but she’s not really sure what she needs and is not very tech savvy.

Is it worth getting an iPad pro ? Laptops are too heavy for her. We just want to get her something asap

thanks in advance

[Bowler]

Urchin I strongly recommend you calling the MNDA help line on 08088026262. They will talk you through the best options for your friend. Please don’t buy anything until you have spoken with them.

[Ellie]

A warm welcome to the forum Urchin

... she has been told to look around online and then her OT will apply for funding on her behalf

Absolutely NOT.

In no way is it up to your friend to identify which assistive technology best fits her needs and abilities, that’s the job for professionals.

She needs to be referred to an assistive tech department who will assess her and provide any necessary devices.

Don’t buy anything: most assistive tech is Windows based anyway, with only a tiny amount being iOS compatible.

As mentioned above, you can phone the helpline to find out the referral flow. Xx

[Urchin]

A warm welcome to the forum Urchin




Absolutely NOT.

In no way is it up to your friend to identify which assistive technology best fits her needs and abilities, that’s the job for professionals.

She needs to be referred to an assistive tech department who will assess her and provide any necessary devices.

Don’t buy anything: most assistive tech is Windows based anyway, with only a tiny amount being iOS compatible.

As mentioned above, you can phone the helpline to find out the referral flow. Xx

the problem we have is that she is deteriorating VERY rapidly.
now her breathing is becoming difficult and her voice much weaker even just in the last 2 weeks and she was only diagnosed in October after her foot went numb.

We are worried that by the time we can get the right information or get someone to come out from the tech team to assess her (she was told by her OT today it’s a six month waiting list for an assessment) then the OT needs to apply for the funding, then wait till the money arrives then get any tech on order, wait for that to arrive….she will already have deteriorated more and be unable to communicate. This is why we are asking here if there’s anything we can buy first to start her off while we wait for her to be assessed etc.

her best friend who has been ther one calling the MNDA for other things but has found them to be not very helpful so far. I will ask him to try again.

[JamesW]

Hi Urchin,

I have had a quick look and found a technology support service for you in your area:

https://www.bhamcommunity.nhs.uk/patients-public/rehabilitation/act/

….there is a number to ring for referrals. I would suggest you try that and if they can’t help you directly they should be able to give you the best route to get to them. I am not in your area but in Derby we have a department attached to Derby Royal called the electronic assistive technology team, they worked really quickly to help me set up equipment my needs at home.

good luck, James

[Ellie]

Urchin Okay, I've just checked Birmingham, they cite a severe staff shortage 😬

Anyone can contact the NHS Access to Communication and Technology service, so it’s worth contacting them directly and explaining your friend’s urgent need. Can she get a letter/input from her Neurologist confirming rapid progression?

From their website:
"ACT operates a telephone Referral and Helpline on Wednesdays and Fridays between 9am and 4pm

Referral and Helpline Tel: 0121 466 3028"

If it’s primarily a way to communicate that’s needed and your friend has the use of one hand, there’s a portable text to speech device called a Lightwriter which may be readily available.

Furthermore, the MNDA advertises a ‘Communication Aids Service’ which not only offers advice, but loans out equipment and can give financial grants - ask for this service.

[Urchin]

Thank you so much to those who have replied that’s been very helpful, we will call the number on Friday before 4 and see how fast we can get someone out for her. Hopefully her doctor can give her a referral to explain how fast she is progressing.

thanks again

[Claireflo]

Hi Urchin sorry to hear about your friend and the speed of deterioration so far. She definitely needs a proper referral so hopefully the above suggestions will help.

Does she have a speech and language therapist? my dad got his lightwriter through them and it allows him to type (one handed due to arm weakness ). It also has a scanning function which will help as arm function continues to decline.

He also uses a text to speech app on his ipad and iPhone. There are a range of free ones that can be used on a tablet or phone. I brought dad an ipad but the speech therapist said she could have provided one for him. Also there are grants from the MNDA that may be able to help if you need to do something quickly.

The prospect of not being able to communicate will no doubt be concerning so I hope something can get sorted soon.

[MMG]

We were within the boundary for Birmingham ACT, our experience is that they are brilliant and very responsive. They provided all communication equipment promptly and provided input devices suitable to his stage of progression and updated them as his needs changed. They also provided the software to link in with other devices in the house which could be controlled by his smartpad. Including smart plugs, TV controls and call systems etc.

We were referred by our speech and language therapist(SALT). The SALT also arranged for voice banking, this was done quickly on my laptop and she even loaned us a suitable headset.

It took a few weeks to arrange funding for the licence fee (funded by MNDA) also coordinated by the SALT.

One thing to note which might be uncomfortable to think about, but wish we had known at the time, is considering something in the will abwillwhat happens to the digital asset, ie the personalised digital voice after death.

I wanted a copy of his voice before the equipment was returned after he had died. ACT were very sympathetic but unfortunately current legislation forbids the continuation of this after death unless stipulated in the will.

Sorry