Email Received from Dietician

“Thank you for keeping me up to date with everything. I hope things get sorted out asap. On another note, Marie (Nutricia Nurse) was in contact with me and mentioned that you may be interested in having some extra energy via tube? If this is something you are interested in, we can always look at using increased energy feed at night with same volume. Or we could look at trying additional boluses (small volume of feed that is gravity fed down the tube at various times during the day. The latter of these would take about 20 minutes for each bolus. If either of these are something you’re interested in, please let me know and I can organise to visit to discuss further.” - Claire

Email received from MND Specialist Nurse

"I have spoken to a lovely lady called Lesley who is a secretary at Urology, Wy Hospital. She is going to check with Dr Gu as to whether you need to see Dr M. Apparently, both consultants do surgery at Wy Hospital but outpatients elsewhere. Apparently, both consultants do surgery at Wy Hospital, but outpatients elsewhere (Dr M - W Hospital, Dr Gu - TG Hospital). We suspect the referral came into the department and that one doesn't know who the other is. Lesley will get back to me and I in turn to you. I have expressed how difficult it is for you to attend OPA's and that we really want you to avoid attending unnecessarily. " - Sam

Email sent to Dr Gu

"I am keen to proceed as you have outlined. I had a prior appointment with Dr M (Urology, Wy Hospital). This has now been confirmed for 07/10/10 at 9:30am. To avoid any conflict, can I leave it to you to confer with Dr M. This procedure will have a huge impact on my quality of life." - Rachael

Email received from MND Specialist Nurse

"I have left a message for Urology Dept at Wy Hospital to get back to you just to see if they all work together. I think you say "Yes please" to Dr Gu but in the email ask that he cancel the appointment with Dr M because you assume you no longer require the consultation. See if he says differently. We want to save you the trip if we can." - Sam

Email sent to MND Specialist Nurse

“The saga continues. We contacted Dr M’s surgery at W Hospital (not Wy Hospital!) who confirmed that I should attend my appointment on 01/10/10. I cancelled hydrotherapy. Today, I received a letter informing me of a postponement til the 22/10/10. We rang to clarify and was told Dr M had requested an earlier date. I now have an appointment with Dr M on 07/10/10. I have no idea what the appointment is for but I think, all in all, it is easier just to attend.” - Rachael

Visit from Nutricia Nurse

Marie visited to demonstrate the equipment for overnight feeds. We tried Bolus feeding but decided it was too slow. Marie will report her visit to Claire (Dietician). Discussed risk of choking overnight. Ideal angle for the bed is 45 degrees,and a minimum of 30 degrees. Marie inspected the arrangement for feed/emergency switch.

Hydro

On seeing Rachael's feet sticking off her foot plates on her wheelchair, Sharon said that she would order a "tray" to give her feet more protection. She took all the details from the chair and said she would contact them. During the session, her right foot and right thumb began twitching uncontrollably. This happens increasingly after exercise. Sharon also discussed Rachael's muscle loss in her legs, choking at night and change to feed routine.