Neurologists

[DianeO]

Hi I’m just wondering if anyone else is finding communication with their consultant to be non existent and unsatisfactory? I have asked to be referred for clinical trials and after several months of lack of response it was my GP who managed to sort this for me . I’ve also asked other questions via the coordinator and had no response . The additional frustration to what is already a challenging and frustrating condition is not needed! I get the standard check ups and pithy follow up letters but not much proactive motivation for anything .. just wondering if this is standard in this particular field ....?

[Ellie]

Welcome to the Forum, Diane.

Do you attend an MND Care Centre/Clinic?

Love Ellie.

[Elvisfan]

Hi diane0
i was diagnosed April this year. I had excellent care in barts hospital I had tests for breathing etc. When newly diagnosed they got me in for tests.
ive never seen my consultant. He phoned once after was diagnosed on phone. Due to Covid they aren’t doing face to face appointments. I did have nurse do bloods at home. Occupational therapist visited but no one else. We are trying for face to face. It’s hard when they ring up. My speech poor and husband takes over as they can’t understand me or see me.I want to be seen by consultant that knows MND not just on phone.. I understand your frustrations as I feel forgotten about after the first week. Considering seeing private neurologist if can’t get face to face.. I totally understand height pandemic but surely they can wear face visor and space appointments out.

[Elvisfan]

I’m also under long term condition clinic by only OT came to my house ar
my request wearing PPE. She’s good but speech man. Dietician email or phone. Had no physio. Was told would
tire me and not worhwhile as can’t strengthen weakening muscles

[Ellie]

I can sympathise with you Elvisfan - it must be awful not to have face-to-face hospital appts so soon after your diagnosis 😟

Incidentally, the email addresses for both MND Specialist Consultants and for the co-ordinator in Bart's are published on this link from the MNDA website, so it might be worth contacting the co-ordinator and find out when you're likely to be seen, before paying privately or switching to another Care Centre.

https://www.mndassociation.org/suppo...ts-and-london/

Good luck.

Love Ellie.

[Jer788]

Welcome Diane, I can totally sympathise with your position. My neurologist I originally saw privately for a diagnosis then as an NHS outpatient. His consultations with me consist of literally 5 minutes ranging from euthanasia to a choice of hospice. I am one of those people who’ll try anything but though he has his own clinical trials ongoing ( which I’ve never been offered ) says there is no hope for the foreseeable future. Some sufferers may appreciate his pragmatism but I have chosen not to see him again.
The support I receive from the MNDA, NHS my local GP and County Council is second to none so I would suggest you direct your energies there.
Best wishes Jerry

[Shaun]

Hello Diane, I think a lot depends on how fast you are progressing, I’m on slow track. I see or have phone calls from physio every 3/4 weeks and see consultant every 6 months, where as my friend ( met through Mnda) who is on 12 month prognosis is inundated with help and support, you are lucky with your GP , mine hasn’t a clue, more obsessed that riluzole May effect my immune system , which it doesn’t, so I don’t bother with them,
I do have my consultants email address and his secretary’s number and my physio mobile number, but at the moment they generally leave me alone, if and when it gets worse I hope OTs etc etc , will be there, but I think in our area that seems to be provided by our local hospice
Reading through a lot of the comments on here, some health authorities are certainly better than others when it comes to MND
S

[Lynne K]

Diane, I am really sorry that you are unhappy with your neurologist.

My neurologist is lovely. We always have a good chat after I’ve had all of the regular tests. I stated my interest in taking part in trials in the very beginning. She told me that since my deterioration was slow at that time then I wouldn’t be accepted on trials.

At a later appointment I asked again regarding a trial that I’d heard about. She said that this trial wouldn’t be available to me since I’d had occasional choking. This symptom was one of the disqualifying symptoms for that trial.

Then I heard about the MND SMART Trial and told my neurologist about it at the next clinic appointment. She said that she’d put my details forward for this. (The criteria for this trial states that it’s open to patients at all stages).

I hadn’t heard anything from either my neurologist or from the trial managers for a couple of months. So I looked for registration details and registered myself.

When I next saw my neurologist and told her that I’d registered myself, she looked amused that I had done this. Maybe she’d have got to it sooner or later but I wouldn’t take a chance that the trial would be full before I would have had my details forwarded.

Maybe your neurologist just doesn’t talk as much about your options and about the design and criteria of different trials but he might have got to it eventually. On the other hand not all doctors are good communicators. We have to take pot luck who we get.

Can you ask if you could be transferred to another neurology team. I’d find out all that you can about the others available before you do anything.

What trial are you on? Love Lynne xx

[Doug Carpenter]

Our neurologists and clinics clearly vary widely – dictated ultimately I’m sure by workload and funding.

I can report only on the Neuroscience Department of the JR hospital in Oxford, which I would say is first class. The Consultants – Prof Talbot and Prof Turner – are contactable via their secretary between clinics. Consultations are never rushed. The specialist MND Nurse Consultant is always available on the end of a phone or email. Other specialists such as dieticians – who prescribed fortified drinks – and the OT who got me my Salsa Mini are there when needed.

They are well integrated with the local branch of the MNDA. Somebody from the branch helps out informally at clinics.

They have been making good use of Skype and Zoom during lockdown. My next scheduled appointment is not until mid-October and it’s not known yet whether it will be face to face or online. I don’t mind either way. There are pros and cons to both.

This Friday there is a Zoom meeting for patients where we will meet new members of staff, hear about new research projects and a new app to monitor patients’ progress.

Immediately on diagnosis over three years ago I was sent reams of information about research projects – as opposed to drug trials – and signed up for all I was eligible for. It’s lovely to meet the brilliant young people who have dedicated the lives to trying to understand this complex disease. As one of them said to me once: “If I’d wanted an easy problem, I’d have chosen cancer.”

Stay safe!

Doug

[Lynne K]

Doug, you certainly do have a wonderful team of neurological professionals behind you. Mine aren’t quite so up to date technologically but try their best. My on line clinic appointment wasn’t on zoom or WhatsApp as I’d suggested but on an inferior NHS System. The sound was not clear. I hope that they sort something better for next time. Love Lynne