Thursday, 30 September 2010

Email Sent to Occupational Therapist

“The shower chair (Freeway) seems to be leaking rust from a ventilation hole on the underside of the seat. Not sure if you can do anything but thought I’d tell you because it’s so new and expensive.” - Debbie

Wednesday, 29 September 2010

Email Sent to MND Specialist Nurse

“I will wait to hear from you. Sorry about the name change. I have been seperated since 2006 and have decided to revert.”

Email sent to Dietician

"Thanks for arranging refresher training (overnight feeding/pump). Marie gave me a demonstration and talked through issues around pump use. Rachael has been choking more frequently at night, necessitating moves and occassional hoisting. Marie advised detatching/reattaching feed. When there are breaks at night, Rachael has insufficient feed. She is aware she needs to finish the dose or supplement with food." 

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

Tuesday, 28 September 2010

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

Monday, 27 September 2010

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.

Friday, 24 September 2010


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.

Call made to GP

Phoned and spoke to the secretary to order a "Just in Case" kit from the MND Society. She said she would pass on the information to Dr G and she would get back to Rachael asap. Left details for further contact.

Email sent to MND Specialist Nurse

"I hope you can clear up a mystery for me. I saw:
Dr B (Respiratory, Wy Hospital) on 11/08/10
Dr Be (Urology, H Hospital) on 18/08/10
Dr A (Gynaecology, R Hospital) on 19/08/10
Dr B (Respiratory, Wy Hospital) on 15/09/10
I am due to see:
Dr M (Urology, Wy Hospital) on 01/10/10
Dr E (Neurology, H Hospital) on 20/10/10

Dr Gu (Urology, TG Hospital) turned up unexpectedly at Dr B's clinic on 15/09/10, saw me and left without speaking to Dr B. I do not know whether to keep my appointment with Dr M. There was some confusion about who Dr Gu was. Dr B inferred, from his notes, that he was Dr R (Urology, Wy Hospital/TG Hospital) and gave me Dr R's secretary's number. I rang them and they had never heard of me. I have too many urologists. Do I answer this email with "Yes please" or wait for Dr M?" - Rachael

Thursday, 23 September 2010

Email received from Dr Gu

"Further to my consultation last week with you last week, I have had the chance to speak to the anaesthetist. He feels that a spinal tap would be possible with you lying on your side. I am aware that the most important aspect is to ensure adequate pain relief, and understand your fears of not being able to communicate any pain issue across. If you are agreeable to go ahead with the procedure as explained in clinic, I will list you to come in due course. I will liase with the chest doctors so that you can be admitted to the chest ward for optimisation. You'll be in hospital for a few days. Please let me know if you would like to go ahead with the Suprapubic Catheter insertion."

Call made to Dr R's secretary

Rang to query whether I needed to attend appointment with Dr M on 01/10/10 at 10am. Secretary said to speak to GP direct. I said I have been told to speak to her. Secretary refused to say whether appointment should be cancelled and said will speak to a doctor then call back by tomorrow. She gave contact number.

Email sent to Dietician

Rachael emailed Claire to let her know she was tolerating the feed really well and building up to a reasonable dose comfortably.

Tuesday, 21 September 2010

Visit from Physiotherapist

Rachael confirmed hand splints are proving effective and said she would monitor her headaches in the morning in case they got any worse. Angela showed collar and demonstrated on Richard (student physiotherapist). Angela said the collar could be used both in the car and in the hoist. She also warned about the pressure points on the collar bone but said to use the collar at anytime it is needed. Angela took Rachael's email address. Discussed changes in position, in velcro adjusters and neck button.

Monday, 20 September 2010

Email received from Asisstive Technology

"The handset will always ring once you have initiated the call. I cannot think of another way of confirming but will contact Possum. I will do edits for website tomorrow and pass on for approval." - Steve

Email sent to Asisstive Technology

"The switch by my bed, connected to the telephone handset, which rings internally is working really well to contact my overnight care. One niggle, I cannot hear whether the handset is ringing upstairs: consequently, I keep ending the call before it is answered. Is there any way to make the base unit ring when the handset is ringing? Do you have any other solutions? Hope the website is going well." - Rachael

Emails exchanged with Nutricia Nurse

Appointment made and confirmed for overnight feed demonstration on 27/09/10 at 10am.

Email received from Nutricia Nurse

Marie emailed to confirm she had the right email address for me and to set-up appointment for an overnight feed demonstration.

Thursday, 16 September 2010

Email received from Dietician

Claire said Nutricia have been contacted and feeding tubes will be amended to the regular type for tomorrows delivery. Claire also said she has left a message for a Nutricia nurse to contact her asap about an overnight feed demonstration.

Visit from Dietican

Claire queried how often Rachael eats. She said at least one bowl a day and explained need for overnight feeding. Discussed changing feeding tubes from mobile type to regular type. Claire said she will contact Nutricia today and try and get tubes changed for delivery tomorrow. Claire said to commence overnight feeding at 50mls/hr, then to increase by 10mls/hr every night thereafter until a maximum of 100mls/hr dependent on Rachael's tolerance.

Wednesday, 15 September 2010

Respiratory Appointment at Wy Hospital

Blood gas test results showed as normal. Dr B ran through options for non-invasive vent but did not feel it was necessary yet. He advised against using general anaesthetic. We discussed choking episodes in the night and Dr B said that this is not necessarily due to anxiety but a sign of bulbar distress.

Urology Appointment at TG Hospital

Dr R said he was going to speak to Anaesthetist and Dr B before emailing back. Dr R seemed shocked that Rachael does not have 24 hour care.

Thursday, 9 September 2010

Call made to Dr R's secretary

Rang to query whether I needed to attend appointment with Dr M on 01/10/10 at 10am. Secretary said to speak to GP direct. I advised have been told to speak to her. Secretary refused to say whether appointment should be cancelled and said will speak to a doctor then call back by tomorrow. 

Wednesday, 1 September 2010

Email received from Dietician

Claire emailed to query how the overnight feed was going and to say she had passed on my email address to Marie (Nutricia Nurse), who would shortly be in touch about further training.