Au naturel mnd

[SAMMY88]

6 months into my als diagnosis, looks like I will be doing it alone (except from this forum 🙂).

Still no mnd clinic or mdt teams i keep hearing about. No mnd nurse either.

I've had 2 OT visits tho from social services dont know who informed them , when i asked they didnt seem to know 🤔.

Even run out of the riluzole tablets i received after my 2nd opinion at the Queen's Square hospital.

Luckily I've not had any breathing problems yet. My home is fast becoming dangerous, falling on a weekly basis but still just about managing.

Anyhow thanks for listening, needed a moan off 😁

[TinyLady]

SAMMY88 sorry to hear you are feeling very on your own. I too am somehow on the sidelines, although my local hospice team are kind and the OT is very good. But no specialist MND support.

Can I ask what area you live in? I'm having to consider whether a move will help, or is even possible. So I like to know where support is good and where it is also non existent.

On the plus side this forum is an incredible source of knowledge isnt it? xx

[Arcadian]

Sorry SAMMY88 I too had 6 months of no support after diagnosis (and 12 months of problems accessing doctors / referrals etc prior to that, as well as a misdiagnosis for a simpler condition).
Fortunately I became aware of this forum and reliable info via MNDA website.

My GP seemed to think that MND multi-discipline team clinic just happened - rather than me having to request my local hospital to transfer my care to a regional centre.

Chatting locally in a MNDA branch meeting yesterday, it seems we are far from alone and that potentially NICE Guideline 42 is not being followed.

Maybe something for raising collectively with MNDA to see how many folk are falling through gaps in the diagnostic and post diagnostic process?

[SAMMY88]

TinyLady What ever you do don't move to Thurrock where I live 😬 most of the GP services are shockingly bad.

The council is £6 million pounds in debt. The crime rate is pretty bad aswell.

How are you lately? Hope you are feeling better xx

[Hope]

The more I read here of people’s experiences, the more I realise how fortunate I am with my care. I was told at my diagnosis exactly what support I would receive, as well as help with applying for Personal Independence Payment. I don’t have a nurse but an MND Coordinator who visits regularly and arranges whatever help I need. I received a visit from a Speech and Language Therapist within weeks of diagnosis, as well as an appointment with my respiratory consultant.

I do hope you will soon receive the help you require and are entitled to. xx

[SAMMY88]

Arcadian, sorry that you to had a wobbly start with mnd services ( sorry about the pun ) I've read Nice Guildlines on Mnd , find it laughable to be honest . It's very annoying and heartbreaking to know what services should be in place.

I read somewhere that you should have a blood test to check your liver before even starting on Riluzole 😳 never had that . I shout out to my husband in amazement at the guildlines and articles I keep reading about the so called help there is for Mnd patients and their families.

[SAMMY88]

Hope, That's sounds great, I had a nightmare filling the forms out with pip. Half of the services you have listed I've not even heard of.

I am pleased tho that you are getting help xx

[TinyLady]

SAMMY88 aahhh, your area sounds like ours. Our council went completely bankrupt and basically we have no services here for anything.

Like you I find the NICE guidelines an amusing read, like a fairytale. I'm not even on riluzole and despite my speech and swallowing issues no offer of a PEG either.

Got a comfy bed though and carers after complaining to my MP (who is actually supportive of MND).

[Bowler]

SAMMY88 this might be of use. According to the web page the branch is 1.5 mile from Thurrock.

• South Essex Branch
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[SAMMY88]

TinyLady That's nice to hear 😊 having a good local MP who also knows about mnd xx

I got it wrong my council is actually 600 million pounds in debt 😳

I just had a call from my local hospital saying i missed my appointment on Monday, i replied it was a phone call appointment and no one rang me 😂 unrelated to mnd but shows the complete and utter joke my local hospital is x

[SAMMY88]

Bowler Thank you for that I really appreciate it x

Unfortunately tho I contacted my local Mnda in the first week after my diagnosis when I was still in a right state. They sent a volunteer to my home. She said she was a retired doctor. She tried many times and failed to test my reflexes. Said my emg results showed upper neurons signs 🤔 err the emg only shows lower. I started to question whether she was actually a doctor .

She explained my stomach contents would flood my lungs if I tried to lie flat eventually. Then finished with I might not make it to easter , oh and under no circumstances should I drive.

After her visit I was literally crying uncontrollable. My daughter complained about her, found out she was never a doctor. It's truly shocking and one hundred percent true.

So I'll be keeping away from my local mnda x

[Bowler]

OMG how despicable is that, I’m so sorry you had to experience that 😥

MNDConnect

[WheelsOfSteel]

Just to comment on the "postcode lottery" idea - I live in Gloucestershire and my support has been very good.
I have a dedicated MND coordinator / nurse who did my DS1500 which got my PIP application through without me having to wrestle with all the paperwork.
My OT and Physio have got me any equipment I needed. I have regular appointments with Orthotics and Respiratory, and my Palliative Consultant is wonderful (although obsessed with my bowel movements ).
I live in a rural area with a small GP practice. I don't think they have seen a MND case before, so I feel like a bit of a novelty.
The only weak spot has been my Neuro Consultant. Medical queries like life insurance and driving capability get addressed to him, and months later I get letters saying they have had no response

[SAMMY88]

WheelsOfSteel wow that's terrific , have you got a spare room ? 😂

[Zante]

WheelsOfSteel same here, I live in a rural area with a very small GP practice. Apparently I am their 2nd patient ever with mnd. I also have an mnd nurse and care coordinator ( I have seen them both only once but can contact them if needed). A Neuro Physio and Speech and Language therapist and a Dietician ( telephone appointment if needed). I come under a local hospital which was actually the very bottom of a hospitals overall national ratings chart! But they have been brilliant for everything. I haven't needed anything big or more difficult like a wheelchair or rise recliner chair etc so dont know how anything like that would go, but I do have an mnd team and also a very good consultant, just a shame we no longer have regular consultant reviews but I can request to be seen if appropriate. It shows how varied it can be because I live in a very poor town and a crippled nhs hospital and yet have a good team of people. x