MND nurse

[GaryM]

What exactly is an MND nurse? I ask because I'm not sure whether I have one, or need one. I have very good support from the community team, which includes an OT, physio, dietician and SaLT. The district nursing team know about me, but have only visited once and that wasn't particularly useful. There are specialist MND nurses at Salford that I can contact. I'm not complaining, just curious. Several people here are under Salford, so I'd be interested to hear if you have the same arrangements.

[Lynne K]

I’m under Salford and the Specialist Nurse that I met there was amazing. She’s friendly, knows her stuff, will help in anyway she can. I have her email address and if I send an email she gets back to me in a reasonable time. The most recent email that I sent her was to ask if she had any idea why I hadn’t heard from the MND Smart team about when I can start on the trial. She explained that the MND Smart team, including my neurologist were meeting that week and that somebody’s would be in contact with me since she had passed my query on to them (a nice MND Smart Specialist Nurse contacted me the next day to say that since there was a huge number of patients wanting to take part it’s going to be carried out in conjunction with our usual clinic appointments). She fund raises for MND, including running in races. I couldn’t ask for anybody better. Lynne

[Ellie]

"The Motor Neurone Disease Nurse provides ongoing specialist care, support and advice for all patients diagnosed with motor neurone disease and their family and carers."

MND Community Nurses might not be available everywhere and, like any service, can be hit or miss. Often they are facilitators, rather than actors but can coordinate services and see a bigger picture, if a client is having difficulty doing the same.

I'm glad you feel well supported GaryM Personally, I have stopped seeing mine because, like you, I feel I get enough from my Community Team and Clinic. (I've probably jinxed myself now and will need to phone her next week 😁)

Love Ellie.

[GaryM]

I’m under Salford and the Specialist Nurse that I met there was amazing. She’s friendly, knows her stuff, will help in anyway she can. I have her email address and if I send an email she gets back to me in a reasonable time. The most recent email that I sent her was to ask if she had any idea why I hadn’t heard from the MND Smart team about when I can start on the trial. She explained that the MND Smart team, including my neurologist were meeting that week and that somebody’s would be in contact with me since she had passed my query on to them (a nice MND Smart Specialist Nurse contacted me the next day to say that since there was a huge number of patients wanting to take part it’s going to be carried out in conjunction with our usual clinic appointments). She fund raises for MND, including running in races. I couldn’t ask for anybody better. Lynne

Thanks, Lynne K. I have found all the staff at Salford to be excellent at replying to emails. I think I just got the impression from some posts that in other areas the MND nurse was like a coordinator that would be the first port of call for any concerns. Ellie hinted at this above. Maybe we just do things differently around here.

[Shaun]

Hi Gary, Ellie’s given the best answer , in simple terms the specialist nurse is your direct contact, who will help you and chase and guide you, help fill in forms etc.
As Ellie said not all hospitals have them, depends on the Health Authority and if they can justify the expense, for me my regular contact is my physio, I raise a problem and she will refer me to the appropriate department, or raise it to consultant or my GP.
our HA is just our unitary authority so quite small.
s.

[GaryM]

Thanks for the replies, Lynne, Ellie and Shaun. I think because I've been dealing with so many different healthcare professionals over the last two months I hadn't really made use of the specialist MND nurses at Salford. Also, I've not had any major issues so far, although I might be doing soon.

[Ellie]

I've not had any major issues so far, although I might be doing soon.

Hopefully not, Gary, hopefully not. (unless you've jinxed us all 😂)

[Susy H]

Hi I am under Salford as well and still a relatively new patient. The question you ask is one that I have been wondering about two so thank you for posting it. My local neuro rehab team has nurse OT physio dietician psychotherapist but I mainly see the OT and physio about every two weeks. I’ve contacted the Salford team a couple of times once when I I wanted advice about sleeping and also about going into The MND smart trial. I guess the Salford team will be more first port of call when things get more complicated and I can see myself using them more then as the local team do not really have a lot of Mnd specific experience. I hope that’s a while off yet fingers crossed When I contacted my GP once she wanted to know what the Salford team advised before she did anything so I guess I’m going to use the Salford team as the experts even though the local team or GP may actually be carrying out any required actions. I hope this is how it is supposed to work?

[Ellie]

I hope this is how it is supposed to work?

Services differ so much depending on where you live, Susy, if you find something/someone that works for you, hang on to it - if it ain't broken...