HELP! What’s That?

[podgeuk Forum Member Find all posts View Profile Close podgeuk]

It has only been a few months since I was diagnosed with MND and joining this forum. And reading the help members receive such as MND Nurse or Local Teams I wonder where is my help? I have spoken once to an MND team and a MND Nurse both a few months ago and neither have contacted me since. My Consultant has left the Hospital trust and contacting the Hospital they do not know when I will have a new Consultant. I live on my own and receive zero help except my neighbour who helps when she can. Last week I fell in my kitchen and lay there for over two hours. Thankfully, my neighbour popped in but had to get 2 other neighbours to lift me up. So, what do I do?
Happy New Year to all,
Steve

[Suefromwakey Forum Member Find all posts View Profile Close Suefromwakey]

Steve
first thing you do is get Care Link installed................thirty quid a month for piece of mind - it has a good range - even outside and into my garage - wear a watch type thingy - press the button for help - we have used it about 3 times now - they come out with the electric cushions to get you up - look it up on your local council

As for any other help we dont have it so cant comment on that - not offered as yet

Sue

[Mary C Forum Member Find all posts View Profile Close Mary C]

Hi Steve ,in south Warwickshire where I live as soon as I was diagnosed the local hospice Lead nurse team contacted and visited us.That got us referrals into the system.You can self refer to the hospice in this area so maybe you can in your area to get some advise.
If you feel you need help with personal care you can contact local social services adult care department,tell them you are struggling and with what and they should arrange with you an assessment of your needs.A care package is put together ie carers to come in to help with personal care.However if you have savings in your name of over 23,250 you will have to pay in full for care provided as not entitled to a subsidised care package.A few people who are in a late stage of MND qualify for continuing health care funding via the NHS which awards you free care but it’s revised regularly and can be stopped with notice.If you have MND nurse tel. Number it sounds like they might be able to see you and talk through your needs too.
Also you can contact your GP and ask to be linked into the local palliative care team(I know thar sounds scary but they usually have knowledge of MND and support available.
Not sure if you have looked at your benefits entitlement and there are disability benefit helplines.The blue scheme is brilliant to enable use of disabled parking.
Once you get known to the community palliative care team you should get the support and advise you need.
My info here is based on years of working as a hospital social worker until I got diagnosed with MND in June .Best wishes Mary

[Ellie Forum Member Find all posts View Profile Close Ellie]

Hi Steve.

Sorry to hear that my favourite F1 driver had a fall - hope you are not sore?

It doesn't sound like you attend a multidisciplinary MND Clinic? Multidisciplinary means that the Clinic is a one-stop shop, staffed not only by doctors and nurses but by a physiotherapist, speech therapist, occupational therapist, dietitian etc.

Check out these links to find services available in your area: https://www.mndassociation.org/suppo...local-support/
and https://www.mndassociation.org/suppo...vices-for-mnd/

It's also very worthwhile to be linked in with your local hospice, which your GP should be able to do, and contact the MND Connect Helpline, click on their tab at the top of the page for details.

Love Ellie.

[Shaun Forum Member Find all posts View Profile Close Shaun]

Hi Steve, I know how you feel, when I was first diagnosed I was told about all these different people that would be involved, but heard nothing for the first few months, even my GP showed no interest, I’ve said this before in other posts, we are not all treated the same, or have the same resources available. Eg a MND clinic.

Talking man to man , we have to admit we need help, I’ve struggled in some areas and tried to carry on as normal, and have finally had to admit I needed help, so contact, your mnd nurse, and GP , by email, phone, text, send carrier pigeon if needed to say ‘ I need help now. I consider I’m at risk’
It wasn’t until I got to see lead partner at my GP and I complained at the practise attitude that they decided to help
You need to make yourself heard, otherwise they think you are fine and you just go to the bottom of the list, there is limited amount of resources , it’s a shame, but but you have fight for those resources.
keep battling Steve

Ellie, Not all MNDA areas are the same either our local branch are really fund raising only.
s

[matthew55 Forum Member Find all posts View Profile Close matthew55]

My neurologist actually told me that pre Covoid I would have been seen fortnightly but my appointments are bi monthly. After a flurry of activity with various professionals in the first two months after diagnosis I now feel like a leper 😉😁x

[matthew55 Forum Member Find all posts View Profile Close matthew55]

Hi Steve, I know how you feel, when I was first diagnosed I was told about all these different people that would be involved, but heard nothing for the first few months, even my GP showed no interest, I’ve said this before in other posts, we are not all treated the same, or have the same resources available. Eg a MND clinic.

Talking man to man , we have to admit we need help, I’ve struggled in some areas and tried to carry on as normal, and have finally had to admit I needed help, so contact, your mnd nurse, and GP , by email, phone, text, send carrier pigeon if needed to say ‘ I need help now. I consider I’m at risk’
It wasn’t until I got to see lead partner at my GP and I complained at the practise attitude that they decided to help
You need to make yourself heard, otherwise they think you are fine and you just go to the bottom of the list, there is limited amount of resources , it’s a shame, but but you have fight for those resources.
keep battling Steve

Ellie, Not all MNDA areas are the same either our local branch are really fund raising only.
s

You forgot smoke signals 😂

[rachelr Forum Member Find all posts View Profile Close rachelr]

I got in touch with my local hospice to see what they can offer. They have zoom wellbeing courses in things like yoga, breathlessness, mindful art. They are putting me in touch with their occupational therapist.
Later down the line I was reassured by their kids counselling services.
I'd say reach out to your now even for the odd course.

[Beemer Forum Member Find all posts View Profile Close Beemer]

It has only been a few months since I was diagnosed with MND and joining this forum. And reading the help members receive such as MND Nurse or Local Teams I wonder where is my help? I have spoken once to an MND team and a MND Nurse both a few months ago and neither have contacted me since. My Consultant has left the Hospital trust and contacting the Hospital they do not know when I will have a new Consultant. I live on my own and receive zero help except my neighbour who helps when she can. Last week I fell in my kitchen and lay there for over two hours. Thankfully, my neighbour popped in but had to get 2 other neighbours to lift me up. So, what do I do?
Happy New Year to all,
Steve

Steve, what area are you from?
Maybe there is someone on here in the same area that could point you in a better direction.
I am in Sheffield, where the treatment has been superb.

Dave