Speech Therapy costs

[Jud11]

My husband is suffering with probable MSA and as his speech is deteriorating, we feel he needs to see a speech therapist. He is on a NHS waiting list but unfortunately we cannot find out how long he may have to wait. I have contacted a Speech Therapist who specialises in Neurological conditions, the quote we have been given is £131 per hour for her services. We are somewhat shocked and wonder if anyone else is receiving private speech therapy and if so what they have paid?

[writerinlimbo]

My husband was lucky enough to receive a speech therapist's help through the NHS. However, the disease kept advancing and swamped every assistance she could offer and he lost all ability to communicate.

With hindsight, the thing I wished we'd done is bank his voice so that he could use it with the eye gaze machine. I always thought it was too late, because he no longer spoke normally, but it wasn't. It is only too late when all the only sound that comes from their mouth is breath - or worse a rattle - when they try to speak.

[Jud11 in reply to writerinlimbo]

Thank you for your reply, it is so terrifying to learn of the consequences of this condition.

[writerinlimbo in reply to Jud11]

It is a hideous condition and to us the very worst was the loss of all his ability to communicate. For me this is all very raw as my husband died two weeks ago, but of all the terrible things he had to endure, losing his speech was the worst. Don't let it catch you unprepared, bank his voice for his own use, and record it for the pleasure of being able to hear him later.

[ChocolatePot]

we were lucky to get a speech therapist from the NHS. Maybe it would help you to talk to your local parkinsons nurse who might know the speech therapist and can get better idea of who and when?I always tried various people to get help asap. Some just know who to talk to and how. Don't give up. Hubby loved his talking pad in the end. He made the queen asking me for his tea! Don't give up and just get everyone involved. MSA had a banking service last year, so ask your MSA nurse also for help and advice.

[Jud11 in reply to ChocolatePot]

Thank you very much for your advice!

[Debbie5]

I agree with what people have said here. My husband had speech therapy via the NHS, and it was helpful to realise how to use the voice that Mark had. This did get less over time, but it helped him use his voice to best effect. The apps and iPad options seem really good now, and i wish we had banked his voice, but we heard about that at a point when Mark did not want to do it. So good the MSA nurses can advise on this now. The advice others have given is really good, especially dont give up and get everyone involved.

[Jud11 in reply to Debbie5]

Thank you so much.

[chester2107]

you should be able to get it through nhs my dad was offered it but didn’t take it up , he refused most things to be honest which was such a shame as it was awful

struggling to communicate with him , as he couldn’t use his hands very well , so couldn’t write , he had never used s computer either , but that would have been great

speak to your doctor as he should be getting lots of help or ask the msa trust to help

my dad was much older so maybe the help was easier

i hope you get it sorted

sending love ❤️

[Jud11 in reply to chester2107]

Thank you so much.

[Hidden]

After the GP made dad's referral it only took a couple of weeks, so go for it! Once they hear it's MSA they will want to be involved. They will want to keep an eye on his swallowing ability over time. You could phone them direct through their switchboard with initial questions, and say there's a referral form on its way.🙂I think the MSA trust might be able to get discounts on voice banking.

Kx

[Jud11 in reply to Hidden]

Thank you so much for your kind response.

[SamanthaMSAT Moderator Staff]

Hi Everyone,

The MSA Trust will pay for voice banking for someone living with MSA- contact us for more information. Ideally your Speech & Language Therapist will support you to do this- ask them to contact us as well. If someone's voice is poor, it may still be possible to use a voice repair technique.

Kind regards,

Samantha, nurse specialist MSA Trust.

[Battack75 in reply to SamanthaMSAT]

I’m surprised to hear this, don’t think my dad was offered this.

[Jud11 in reply to SamanthaMSAT]

Thank you for your info!

[SamanthaMSAT Moderator Staff]

Hi Jud11,

This is a new service we have just started to offer. I am sorry to hear your dad wasn't offered voice banking via the NHS.

Kind regards,

Samantha.

[chester2107]

that’s great to know for future reference 😎

[Fgsm]

Hi Judy , where in the uk are you , we are in west London and were seen within a week of referral . ring the speech therapists and they will give you an idea of the wait time . Good luck .

[Jud11 in reply to Fgsm]

We live in Birmingham, I have rung Speech Therapy Unit at the hospital twice but they are unable to give an indication of how long the wait will be. I am going to get our GP and the Neurologist on the case too.Thank you for your response.

[Androuu in reply to Jud11]

hi we live in Cannock area my husband hAs been seen lots of times they have been great x

[JillMSA Moderator Staff]

Hi Jud11 is your husband registered with MSA Trust registered with MSA Trust ?

[Jud11 in reply to JillMSA]

No I have not yet, my husband is due to see his Neurologist in September for first face to face for 2 years and the Neurologist will then confirm suspected MSA diagnosis.

[JillMSA Moderator Staff]

HI Jud11, if he has been diagnosed with probable MSA I would encourage you to ' join us'msatrust.org.uk/support-for...

one of our specialist nurses will then hopefully be able to help you with accessing a speech therapist.

[Jud11 in reply to JillMSA]

Thank you for your response, I will join. Kind regards.

[Annietutt]

Hi.My husband has been lucky enough to receive speech therapy support, even during lockdown (remotely) However, I have replied to another post detailing with how we banked his voice ourselves if you need information on that.Or you can ask me more if you wish. The costs for private support seem astronomical!

[Jud11 in reply to Annietutt]

Thank you so much for your response to my post. Fortunately my husband has now received a NHS phone appointment with a Speech Therapist and has another one booked in September. His speech fluctuates so much in strength and clarity, some days good and some days not so good. I understand this is how it can be with this awful condition. He also has fortnightly sessions with a Neurological Physio and this has been invaluable in helping him deal with all the balance issues, this has not been provided by the NHS but we felt the financial outlay was worth it. Kind regards.

[Annietutt in reply to Jud11]

That is good to hear, I am pleased for you.

[mandg in reply to Jud11]

That was interesting to read Jud11 about the Neurological Physio, as I had been told that there was not much difference in treatment from regular physio.