Hospital visits.

[GaryM]

Debbie, I’ve had a couple of online clinic appointments, not good either of them because of the hopeless NHS technology. When the screen was active the voices sounded like we were under water. But my neurologist had enough information from me because I’ve got into the habit of typing out a summary for her of all the answers to her usual questions. I email this to her. Then she can ask me to elaborate about particular points. She said that this is helpful.

I was called in for a face to face last time and saw the breathing team on another face to face appointment (after meeting them first in the clinic). I have my next appointment on Wednesday 24th February face and I’m meeting with the MND Smart team.

My clinic in Salford have their virus avoidance well sorted. For example when I got weighed last time Steve wheeled me into the small room where the scale is and the staff (usually 2 of them in this room) stayed outside at a good distance away. Steve weighed me. The staff called out instructions. Then when we had gone back to the waiting room one of the staff disinfected everything that we’d been likely to touch. All staff wore masks and kept social distances. Masks were provided for us (despite us having arrived wearing masks). I had been worried about the risk of picking up an infection at the clinic but after the strategy that I observed my worry reduced, although I am still very careful not to touch anything that I don’t really need to etc

I hope that everyone’s clinics have such good infection control, Lynne

As you know Lynne, I'm at Salford also and I agree. I even had a nerve conduction study done last July where the consultant is obviously sat right next to you. That lasted 1.5 hours. I had an MR scan in the summer as well. I can't fault Salford's approach. Going next Wednesday.

[Deb]

Thank you for all your replies. Its reassuring about the precautions hospitals are taking. I think when you have been in the house along time you get paranoid about going out.

I have a list of questions for my physio, not least about hoists... I'll start a new thread on this. It makes sense to go and as I said, my husband likes the contact with the team. Its very isolating for him. I like your idea , Lynne of emailing questions first.

Sue , I think I'm seeing the consultant you mentioned. We can blow each other kisses from a social distance. Nearer the time we'll have to decide what we're wearing so I don't blow kisses to a total stranger.

Love Debbie x

[GaryM]

.........

so I don't blow kisses to a total stranger.

Love Debbie x

No harm in that, apart from being thought a bit odd. 😉

[denise]

Now we know what gary gets upto! 😄

[Suefromwakey]

Debs - I'll wear a mask!!!!!!!!!! oh I forget we all will !!

[denise]

Sue 😆😄😃

[Tess]

My partner has been avoiding hospitals but generally the system in Scotland has been great with their 'attend anywhere' video calls. Easy peasy, less hassle and don't have to get everyone organised, leave the flat or find parking spaces haha. I guess it certainly depends the nature of the consultation, but for a general checkup, a video call has been great for us. If there's a pressing or urgent matter we can easily get in touch too. We had the MND nurse visit in person recently for the first time in months due to lockdowns and to be fair she was masked up, with gloves and apron and even hand sanitizer.

It's true there's risk anywhere right now, from a supermarket or a hospital but its personal preference if the choice is there. But finding alot of appointments have been possible from home right now, so we're taking advantage👍🏼

[Jastikur]

I hate visiting hospitals. Even if I'm in really bad condition, trying to overcome it. Reasons: careless doctors, pricing, smell. But sometimes I have to overcome my hate towards these places and to attend doctors because of my problems with hearing. It started when I was just 41yo, and I should take pills and have a serious treatment to stop the process. I've found a good audiologist near me who's been helping me for 2 years already. Don't wanna make too many compliments, but his work almost saved my hearing. Now I truly believe that my hearing will get really better in the near future.

[denise]

Hospital used to smell of disinfectant but they dont anymore. Suppose wearing a mask stops us smelling too many things. Think things aren't so bad in that they dont tend to be too busy. I just hate waiting and getting there.

[Sarahw]

My consultant told me she wanted a face to face last time. I wasn’t keen because Kings in London have no ceiling hoists for me to use (they might be able to get a mobile hoist if i can tell them what time i will need it!). Also the car park has gone. Reluctantly i went and was greeted by a registrar Instead. “So, tell me when this first started….” “It’s in the notes!” Retorted my husband ……… it was downhill from there. I wont be going back for a while.

[denise]

Oh Sarah that's terrible. I dislike going over things time and time again. I want things going forward not keep looking back and if they cant share notes then why we bothering? 🤨

[Deb]

I too dislike going over things. I do want to help but I find it hard to be examined by registrars who are learning.i have to remind myself that my daughter in law who is a GP had to train like that.

In Leeds there is fund raising inspired by Rob Burrow. Its a worthwhile venture to create a purpose built MND centre with tests and treatments all in one place. We were asked what would be our priorities eg changing place toilets and help for carers and families. Rob has a young family and he is keen for young children who have been effected to get support.

I admire this fund raising but I also think money should be used to help people diagnosed now who need home adaptations so they can make the most of every day. Xx 😘🤗