Visit from Occupational Therapist

AM and AB came to visit Rachael about providing Rachael with a new bed. AM measured Rachael's bed so that she can compare it to the bed at Loan Stores. She said that she will have the new bed assembled at Loan Stores before having it delivered to Rachael so that she can make sure that it will be suitable for Rachael.

Visit from GP

Dr R came to visit Rachael to discuss her prescription drugs. Rachael asked the doctor if they were all necessary as she often feels unwell due to the large quantity of drugs that she is taking. 

Dr R advised that Rachael should stop taking Cetrizine. Dr R said that he would remove Dolperidone from the prescription as Rachael told him that she has not started taking it.

Dr R said to stop using Ibuprofen as it can cause stomach upset, he said to use Oramorph when in a lot of pain and paracetamol. 

Rachael can continue using Fastab and Lorazepam at the same dosage.

Rachael asked if she could stop taking Riluzole. Dr R said firmly that Riluzole should be used as it is beneficial to do so.

Rachael asked if she could split up her Mucodyne dosage as Mucodyne makes her feel hot, clammy and drowsy. Dr R said he would check and ring her later. Dr R phoned Rachael to say that she could split the dosage and take Mucodyne 4 times a day instead of 3 times a day.

Dr R said to take nebuliser and feed as prescribed.

Rachael wanted to discuss how to time taking her medications without rushing and squashing them in around her feed and NIV, shower and flushes but Dr R left.

Catheter change appointment at Wy Hospital

Rachael attended her catheter change appointment. The procedure went smoothly. When S checked the old catheter he found that there was some grit in it. 
S said that Dr G, Rachael's GP, had contacted him about ordering the yellow catheters. He said that he would still be able to provide them if necessary but it would be better if the GP could get them for Rachael. 
Another appointment was made for five weeks time.

Phone call from R Occupational Therapist

A telephoned Rachael to let her know that she is arranging for Prism to come and look at her shower chair. She also said that she would come to visit Rachael next Monday to see how she is getting on and to discuss the problems with her bed.

Visit to S Hospice

Rachael and two of her PAs visited S hospice. They were shown around by Dr. P and S. After looking around Rachael had a discussion with the doctor and the senior clinician. They discussed pain control and sleeping difficulties. Also the problems that Rachael has fitting in enough feed and using her NIV at the same time.

They suggested that she should speak to her dietitian about a bolus feed as this could be taken during the day and would not interrupt her NIV use overnight. 
They said that the Occupational Therapists should be able to help Rachael with the difficulties that she is having with her bed, Rachael told them that it is being looked into at the moment.

Dr P said that they could help Rachael with pain and symptom control. Dr P also talked about their admission policy and said that all Rachael's care team and the professionals involved in her care should be aware of what her end of life wishes are.

Rachael was very tired after this long discussion and another appointment was made for two weeks time.

Visit from Palliative Care Nurse

C visited Rachael to monitor her progress as arranged last week. Rachael and C discussed how Rachael was feeling both physically and emotionally.

C told Rachael that she has been keeping in touch with D from Wy Hospital and that she is trying to arrange a meeting with the MND Nurses at SR Hospital.

C has also been in touch with S Hospice and has arranged an appointment for Rachael to visit the hospice.

Visit from Physiotherapist

K visited Rachael to bring some filters for the suction machine. K told Rachael that filters are not being used any more but she had brought some spare lids which are now used as filters.

When the old filter was removed the tubing did not reach the lid. K said that she will bring some tubing and connectors as well as some Yankeurs and suction tubes within a week.

K said that she would speak to C about Rachael's care team. She will also speak to the MND nurses at SR Hospital about obtaining some Atropine to help with Rachael's excess saliva.

Visit from Occupational Therapist

D visited Rachael regarding the problems that she is having with her bed as arranged by C, the Palliative Care Nurse. D and Rachael discussed the issues, then D telephoned R Occupational Therapy department to arrange a visit from a representative and an Occupational Therapist for new bed support.

Rachael also told D about the problems that she is having with her shower chair. D said that she would order a five point harness. She recommended that Rachael's arms should be propped on pillows when she is using the toilet to help support her shoulders. 

Pillows should also be used when Rachael is in her wheelchair to take the weight off her shoulders as this is the main cause of Rachael's shoulder discomfort.

D also recommended that Rachael should be kept leaning back in the shower chair rather than being tilted up, when drying her after a shower, for example.

D said that she would contact Wheelchair Services to try to arrange an appointment with a specialist wheelchair occupational therapist to come and review Rachael's wheelchair.

Follow up letter received from Dr E

Rachael received a follow up letter from Dr E after her appointment at SR Hospital. In the letter he said how pleased he was to see Rachael again although he thought that she was looking tired. 

He went on to say that he and Rachael had talked about the difficulties that she has with having enough feed and using her NIV as well. He understands that Rachael has been losing weight and that the community dietitian has altered her feed regime but this hasn't been of any benefit yet.

He then referred to the problems that Rachael has with her sleep. He thinks that her sleep could be disturbed due to her medication or pain, particularly around her shoulders. There is also a tendency for her thorax to slip to one side whilst sitting in her chair. He is uncertain about what sort of co-ordination there has been to try and improve her seating comfort.

He then mentioned that Rachael's bladder is controlled with the suprapubic catheter and although she struggles with her bowels she is opening her bowels every one to days passing soft stools.

Dr E knows that there was a clash of opinion between Rachael and CB from the hospice regarding end of life discussions. He thinks that it may be helpful to get the hospice team involved again to see if they can help Rachael with symptom control as he is struggling to give any further advice.

Appointment at Clinic at SR Hospital

Rachael attended her appointment with Dr E. Rachael spoke to Dr E about the problems she is having balancing her feed with her NIV usage. Dr E said that he will speak to Rachael's dietitian to see if she can give Rachael a more highly concentrated feed. He is also going to prescribe something for Rachael that will speed up her digestion.

Rachael also told Dr E that she is still unable to use her bed. He said that the Hospice may be able to help her with this and the problems that she is having with her feed as well. He is going to contact the Hospice team to see if they can become more involved.

Rachael also told Dr E that her shoulder is sore, he said to use paracetamol for this.

Dr E is going to arrange a case conference to update the medical professionals that are involved in Rachael's care.

Rachael's weight was 52.2 kg. just over 8st.

Visit from Lung Clinic Specialist Nurse

D visited Rachael. C was not able to come due to illness. However, her colleague called in on her way to somewhere else. She said to Rachael that as C was not available she expected that Rachael would like to rearrange the meeting. Rachael agreed to this.

D asked Rachael if her NIV has been ok since she had adjusted it. Rachael said that it has been fine but that the Cough Assist was still causing the same problems of stomach pain, trapped wind and bloating.

D phoned the Physiotherapist at Wy Hospital and then she adjusted the Cough Assist according to his recommendations.

D said that any sleep Rachael has whilst she is using the NIV will be restful sleep because the NIV is helping the breathing and allowing relaxation.

D said that she would arrange another meeting for herself and C as soon as possible.