What happens next

[michelleroberts]

Morning, I was diagnosed last Thursday and was wondering what happens next?
Do I wait for people to get in touch or do I need to do the contacting.
Can I get a powerchair from the NHS as now the weather is getting a little better I am desperate to get outside independently?
Any tips and advice would be great.
I know it was only last Thursday and we have had a weekend in between but was just wondering how things happen moving forward. Thank you xx

[shelly21]

You should have been contacted by your mnd nurse. They usually do a home visit. They explain all the other departments involved in your care.

The mnd nurse can put in an urgent request for a power chair. However the sometimes decline wheelchair as the need must be both inside and out use. So say you've had a few minor falls in home as the waiting list is high in certain health authorities.

The first tests are:
Blood test ready to start riluzole
Lung function test.

I had a big delay so I did make an appointment with my gp.

It will get busy. Keep asking away x

[JoM]

Hi Michelle & sorry to hear of your diagnosis. I’m not sure if it’s standard, but when my partner was diagnosed, they left him to process the diagnosis, then we had a visit from the MND specialist nurse after about 10 days. She asked various questions & then decided on what/who he needed to see. We then got appointments for speech therapy & dietician, who he saw over the next week or so. In our area, there is a quarterly MND clinic, the first was a month after his diagnosis, where he also saw the respiratory guy.
Since then, other than a few emails & calls when he’s had issues, we haven’t seen anyone & now waiting for the March clinic. We can contact the team though at any time if needed, then they will come & see him or decide what needs to be done.

[Bowler]

Hi Michelle, as you say it’s very early days, it will certainly get very busy with appointments and contacts. You should receive a large pack off the MND Association inside which there is loads of information. I would strongly caution against reading it all straight off as it can be overwhelming and upsetting. I would view it more as a reference guide to use as and when.

The one thing you will find useful from the off is the page at the back onto which you can record the names and numbers of all the people involved in your care which can be considerable.

If you don’t receive the pack within the next couple of weeks you can request one by contacting the connect team.

[JamesW]

Hi Michelle,

In addition to the above you also will be referred to a Neuro OT (occupational therapist). They will be able to refer you to your local Wheelchair Services for an assessment, plus they will help you with access to other equipment that you may need.

This will all seem very daunting at first but you will soon find out who you need to talk to and for what purpose. you will find lots of support here if you get stuck.
James X

[michelleroberts]

Thank you all for replying.
I have had emails today saying I will be contacted shortly and I had a visit from physio who is also going to help coordinate things.
I know it’s not been a week yet since my diagnosis but it seems like a lifetime!
Enjoy the rest of your day - Mexican for us this evening and a couple of glasses of Pinot! xx

[TinyLady]

michelleroberts glad the ball is rolling and contact has started. It can really vary depending on where you live xx

[Ellie]

michelleroberts A very boring suggestion: make a file on your PC/tablet or get yourself an indexed notebook and note names, phone numbers and email contacts for each department - physiotherapy, occupational therapy etc. etc. because people will (hopefully) appear thick and fast and they'll just morph into one big blur!

Lovely smiley pic btw. xx

[Zante]

michelleroberts hi Michelle, it sounds like the support is kicking in already. My first visit was from the mnd nurse about 2 weeks after diagnosis and she brought the large pack from the mnda with her and checked with me first that I was ready for it. She then went through which services would be involved and who would be coming and what they do and she arranged all of this. Then came the social services OT from the council for home adaptions and minor things indoors like grab rails in shower and stair railings. To be honest for me personally it was too much all in 1 go and I was struggling to cope with who was coming when and some days having 2 in one day, so I asked to delay 2 of the referrals, so the poor dietician got postponed also! They have since been in touch. I am glad that you have some support in place and have found the forum too. Enjoy the Mexican and wine tonight!! x

[michelleroberts]

Once again thank you all xx

[Pauline H]

Hi Michelle
It seems others have got in first with their responses this morning, so there’s nothing else for me to add, except to say that I too was somewhat overwhelmed initially, once I was in the NHS radar, with the many different support services wanting to get involved. Sometimes it can seem like too much, but at the same time, it’s good to know they’re there.
So really, this was just to say hello - and good luck 🤗

[Geoff]

Hi Michelle Roberts
I was officially diagnosed on the 16th of January. And I went on my own to see the consultant which really was a big mistake emotionally.... My wife and I spent a week in tears. But I got to say I got a amazing consultant. At first I felt very isolated by the system with nobody to contact and not knowing what was going on. On my second vist to the consultant I broke down and told her how scared and isolated I felt. She was very understanding and said that now the diagnosis was official. Things woukd happen very quickly. To this day I have had no contact with a specialist mnd nurse.. I have had a occupational therapist come to my home as I have drop foot.. And she has ordered some appliances for the bathroom. I have bought my own electric wheelchair as I now struggle with walking. I got a lung function test this week and the beginning of March I got the sleep tests. And next Monday I got the speech therapist comeing to my home to help with swallowing and speech... But still nobody has contacted me as regards to my mnd. So I feel where your feeling a bit isolated but I think and hope they touch base with you soon. Good luck and take care. I'm allways here if you want a chat...

[Ellie]

I have had a occupational therapist come to my home as I have drop foot..

got a lung function test this week

the beginning of March I got the sleep tests.

I got the speech therapist comeing to my home to help with swallowing and speech...

But still nobody has contacted me as regards to my mnd.

Geoff
I don’t really know what you mean by “still nobody has contacted me as regards to my mnd”: the foot drop, lung function, sleep patterns, swallowing and speech are all part of MND, so those healthcare professionals are vital in your overall symptom management (often more so than the Neurologist...)

[Geoff]

Sorry. What I meant was. Yes I have be contacted by these organisations. But I have not had a mnd specialist nurse contact me or be assigned to me for my everyday concerns and guidance in everyday living and help with benifits..
Which after reading many of the posts here. Other sufferers seem to have a specialist mnd nurse assigned to them.
I do apologise if I sounded ungrateful.

[Arcadian]

Geoff The specialist MND Nurse is possibly coordinating the various health professionals, as well as updating an overview for the MND Consultant.
That is what seems to happen in the regional MDT clinic I attend.

Did you get a leaflet / pamphlet with clinic contact details for getting in touch with them?
(This is a handy way of balancing your concerns with what they may have prioritised).