Visit from Lung Clinic Nurse and Palliative Care Nurse

C and D visited Rachael to discuss her plans and wishes for her end of life treatment and care. They had a long discussion after which they agreed that C will visit Rachael once a fortnight to monitor her progress.

D will send a form for Rachael to fill in, in which she can specify her end of life wishes.

C is also going to send a form for Rachael to fill in. C will go through the completed forms with Rachael on her next visit. 

C and D will stay in regular contact with each other in order to monitor Rachael's progress.

C gave Rachael a prescription for Lansoprazole to help with her acid reflux. C said that she will contact Rachael's GP to ask her to add this to Rachael's prescription. C is also going to ask Dr G to visit Rachael regularly to monitor her progress.

C will also contact S Hospice to arrange another visit for Rachael. She is also going to contact a District Nurse Team Leader to see if a different branch of District Nurses could treat Rachael.

D recommended that Rachael uses the NIV as often as possible, especially when she is drowsy or tired.

visit from Dietitian

C visited Rachael to see how she is getting on. Rachael told her that she feels weak and hungry. After some discussion C said to increase the amount of feed she has to 700ml to be take over seven and a half hours. C will order some 1000ml sachets for Rachael and told her not to worry about the 300ml that is wasted. She wants her to use two of the 500ml sachets that she has for the time being.

C also made a note of the amount of liquid that Rachael has during the day. 

Rachael told C that she also suffers from constipation and diarrhoea. She thinks that Oramorph makes her constipated. C agreed that Rachael's medications could be causing her constipation and diarrhoea to some extent. She will contact Rachael's GP about this.

C took a list of Rachael's medications and left a feeding plan for Rachael.

C will visit Rachael again in two or three weeks time. She asked Rachael to ring her if she has any problems in the mean time.

email from Speech Therapist

M emailed Rachael enclosing the email from Smartbox regarding the exchange of Rachael's myTobii for the loan machine. They now have a machine ready to send out. M will fill in the form and return it.

She asked Rachael would she be able to manage without her computer while Smartbox swap the Grid to the loan machine. She thought that if Rachael or her PAs felt that they could do it Rachael would not have to manage without for a short while.

Rachael replied that she would like Smartbox to swap the Grid over.

Mandy replied and said that S at Smartbox is away at the moment, she will contact him on his return to arrange the swap and will be in touch with Rachael as soon as possible.

Rig change at S R Hospital

Rachael attended her rig change appointment at S R Hospital. The procedure was carried out smoothly by Dr K.

emails exchanged with Palliative Care Nurse

Rachael emailed C to let her know that DF would be contacting her about arranging a visit.

17th April. C replied to tell Rachael that she had left  a message with D and had provisionally booked a visit. She will confirm this with Rachael when it is arranged.

Catheter change at Wy Hospital

Rachael attended her catheter change appointment at Wy Hospital. Rachael told S that we will bring our own catheter to the next appointment. S had some difficulty in removing the catheter so he might use a different one next time.

emails exchanged with Speech Therapist

M emailed Rachael to see if she would be alright to return the form to Smartbox regarding the exchange of her myTobii for the loan one and to see if she would she like some help with swapping the Grid over to the loan machine.

16th April

Rachael replied to say that she does want some help and to tell M that she has not had anything from Smartbox.

email from MND Nurse

S emailed Rachael an appointment time for her rig change.

Dental Appointment

Rachael attended her routine dental check up. The hygienist cleaned Rachael's teeth and Dr A gave her a check up. Everything was fine. Another appointment was made for six months time.

emails exchanged with CB

C emailed Rachael to make an appointment for Rachael to visit the Hospice.

Rachael replied to agree a date.

emails exchanged with Palliative Care Nurse

Rachael emailed C to let her know that she will be in touch with S Hospice next week when her main PA returns from holiday.

C replied to say that's fine, she was just worried that Rachael couldn't reply. She asked Rachael if it would help if she came to see her.

Rachael replied to say yes please.

emails exchanged with Speech Therapist

Rachael emailed M to ask if there was any news on the upgrade for her MyTobii eyegaze computer.

M replied that she hadn't heard anything but she had just phoned Smart Box to ask about it. She was told that they are waiting for some machines to be returned. When they get these back, they will lend one to Rachael so that hers can be upgraded.

Appointment with Phlebotomist

C visited Rachael to carry out her liver function test. Rachael's next appointment will also be a home visit, her GP will contact her with an appointment.