Friday, 27 January 2012

Continuing Healthcare Assessment

Mr V conducted an assessment in which nobody acted on Rachael's behalf. Rachael requested extra hours for 2 person hoisting and overnight care. Rachael has not had any input from CHC apart from payment since 2008. Mr V seemed quietly optimistic that there would be an increase in payment as Rachael's needs had certainly changed and increased since 2008.

Tuesday, 24 January 2012

Visit from Nurse

Shelley arrived at 10:30am to train staff on how to use the cough assist machine. Shelley asked Rachael if she frequently struggled to cough or swallow mucus in her throat. Rachael said she did. Shelley said that using the cough assist will prevent chest infections by effectively "hoovering" the mucus plug out of Rachael to try  and simulate a cough. Shelley noticed Rachael has some slight chest movement remaining. Shelley then advised Rachael to use the machine every day. Shelley also advised that there should be a maximum of 3 cycles per use, although you can have another after 30 minutes. Overuse of the cough assist can cause fatigue. Shelley took Rachael's finger pulse oximetry which resulted in 77 beats per minute at 96%. She also checked Rachael's chest with a stethoscope.

To setup Cough Assist Machine:

Attach bacterial filter to machine
Attach tubing to bacterial filter
Attach adapter to tubing
Attach face mask to adapter

  • Do not use machine 30 mins after eating/drinking
  • Do not use without bacterial filter
  • Do not exceed 30cm in pressure
  • Regularly check tubing for cracks
  • Keep on stable surface
  • Keep away from heat/water sources
To use Cough Assist Machine:

Always test pressures first before use
  • Take off mask
  • Cover tubing with hand
  • Rotate pressure dial until pressure is shown as 27.5 (stickered)
  • Initial pressure shown is correct pressure
There are 2 modes: 

Manual treatment - use the inhale/exhale switch

Automatic treatment - machine will run through cycles automatically. 
  • Make sure all dials are set to the stickers.
  • Hang mask on bridge of nose and lower over mouth.
  • Use reasonable force to get an effective seal.
One cycle consists of: 

Inhale - 2 seconds
Exhale - 2 seconds
Pause - 0.5 seconds

To clean tubing, wash in warm soapy water. 
To clean face mask, wipe with facecloth. Never use wet wipes as this can rot the silicone.
If there is any visible phlegm in the tubing or filter, change immediately. Any replacements can be ordered at the ventilation office.

Saturday, 21 January 2012

Respiratory Appointment at Wy Hospital

Blood gases were within normal parameters. Bipap was thoroughly checked and serviced. If Bipap is needed at night, staffing would possibly need to change to accommodate removal of mask etc. Dr B was happy to continue under review.Next apponitment made for 12/04/12 at 12pm.

Thursday, 19 January 2012

Visit from Dietician

Rachael told Aisling about having severe stomach cramps last month after her feed but was unsure if it was a bad batch or a stomach bug. Aisling asked how much feed Rachael was taking - 750ml. Rachael said she had a new batch of Nutricia and seemed to be tolerating this batch better. Rachael also said that on the rare ocassion she manages a big meal, she may forgo the feed, but stressed this is very rare. Rachael said she had noticeably lost weight when not on feed but seemed to be a stable weight now she was back on it. Aisling asked how Rachael's stoma site was. Rachael said it was fine as were her bowel movements. Aisling said she would email in a few months. Rachael advised Aisling that she had crumpets in the mornings and stew at night. On a good day, Rachael can have up to 4 meals a day, but no meals when tired. Aisling advised Rachael to take feed regularly to maintain weight.

Visit from Physiotherapist

Angela arrived with a foam neck brace. Rachael felt this pulled her neck muscles painfully and said this would be no good. Angela said she would take it away with her. Angela said she would make an urgent call to orthotics department at B Hospital so a custom-made neck collar can be made for Rachael. Rachael said her hands were also causing her a lot of pain. Angela said to do range of motion exercises on hands and suggested a prescription of pain relief. Rachael declined until all positional remedies had been tried first. Angela said Preston Wheelchair Services would be the best people to speak to about positional remedies. Angela could not give any advice to relieve neck pain, that Rachael is not already trying.

Tuesday, 17 January 2012

Catheter change at TG Hospital

Rachael had one voltarol flush before leaving for catheter change appointment, and the majority of a voltarol flush upon arriving at the hospital. Stuart attempted catheter change in Rachael's chair, at full recline. Rachael found this painful but successful. Stuart asked Rachael if they could change appointment day from Tuesdays to Thursdays. Rachael agreed. Stuart said that he will now try and do catheter change in Rachael's chair from now on; barring any problems. Rachael finished the voltarol flush when she got home.

Monday, 16 January 2012


Jo did the most cursory of arm exercises then Rachael was left to float until the end of the session, when Rachael was walked half a width of the pool. Rachael tried to request a knee bend but was unsuccessful in the communication.

Email exchange with Speech Therapist

Aisling emailed to confirm a date she could visit to discuss Rachael's feed overnight. Email sent back confirming appointment on 19/01/12 at 11am.

Wednesday, 11 January 2012

Clinic at H Hospital

Rachael saw the physiotherapist who said she was pleased that Rachael was getting a track hoist in her living room, but was disappointed that the community physiotherapist hadn't been to look at Rachael's neck, back and hands. She said she would get community physiotherapist to contact Rachael at home.
Rachael then saw Dr E who agreed to contact the GP to confirm that he is happy for Rachael to vary her dose of Pregabalin as she feels fit. He went through full range of checks on muscle wastage, particularly the bulbar region. Discussed Rachael's fatigue and agreed to trial an additional Skype conversation before the next clinic in order to  address issues for further investigation. Rachael felt this would save a lot of energy when it comes to do the actual consultation. Dr E advised that Skype could not replace clinic appointments but was keen to investigate the potential benefits. Rachael will invite Dr E to become one of her contacts and make an appointment for the first Skype session.
Rachael then saw the dietician who told Rachael to monitor her feeds as Rachael had had to throw one batch away as was having difficulty tolerating it,apart from the feed from last night. The dietician said she would get the local team to arrange an appointment to visit Rachael. Rachael said she had noticed some weight loss but there was no available scales.
Lastly, Rachael saw the speech therapist who agreed to email a wording to introduce Rachael's speech problems and if necessary, a response to strangers who Rachael comes into contact with. Bev acknowledged considerable bulbar deteriorations since they last met but was satisfied Rachael had the best available equipment to assist her. Discussed Rachael's choking incidents. Bev advised Rachael to start taking Mucodyne and stressed she would get GP to prescribe it whilst at clinic. 
Rachael spoke to CAB who were of no help at all.

Monday, 9 January 2012


Jo did short and cursory range of motion exercises on Rachael's elbows and knees. Jo also attempted walking but for the main part, Rachael was left to float. Communication problems were again evident at the session. Jo had a student and an observer with her in the pool.