Visit from GP

Rachael called her GP to come for a home visit because she was struggling to clear her chest and the Cough Assist machine was not helping. Dr H checked Rachael's chest and he recommended that Rachael should increase the dosage of Erythromycin from 2.5ml to 4ml.

Dr H said that Rachael should contact the surgery if the condition gets any worse.

Visit from Palliative Care Nurse

C visited Rachael to monitor her progress. C and Rachael discussed Rachael's well-being over the last week.

Rachael told C that she still had not received her anti depressant medication. C phoned the GP's surgery and arranged for another prescription to be left for collection.

C also phoned the MacMillan team to arrange  another visitor for next week. C will call again in two weeks time.

Follow up letter from Dr P

Rachael received a follow up letter from Dr P after her appointment with him at S Hospice. He wrote about the problems that Rachael is having with her feed and that he recommended Erythromycin to help with these problems.

He then mentioned that Rachael's ventilation seems to inflate her stomach and he thinks that this is contributing to her discomfort when she tries a feed.

He then wrote about the discussion that he and Rachael had had regarding her bowel problems. He thinks that Movicol would be helpful for Rachael in the long term.

Dr P was also concerned about Rachael's sleeping problems but after some discussion he and Rachael came to the conclusion that they could not resolve this problem at the moment as Rachael is worried about the effects of night sedation.

Appointment at S Hospice

Rachael attended her appointment with Dr P at S Hospice. Dr P asked how things are with Rachael. They then discussed Rachael's ongoing problems with her stomach pain, saliva and feed. 

Rachael told him that she will be having investigations into her stomach pain and that the suction machine helps with her saliva problems.

Dr P tried said that he doesn't know the answer to the feed problem but he said that there is some medication that will move the feed from the stomach to the intestine.

Dr P then asked if Rachael would like something to help her to sleep. Rachael was not sure if this would help. She said that she worries about her alarm not working or that her PAs will not hear it. Dr P suggested that Rachael could build some sleeps into the daytime. Rachael told him that she catnaps. She also has some feed if she goes to sleep in the daytime.

Dr P said that an antidepressant such as Prozac in liquid form may help to improve Rachael's mood in general which may help her to sleep.

Dr P asked if Rachael wanted to discuss anything else. Rachael said that was all and it is just good to go over things.

Another appointment was made for a month's time.

Phone Call from Lung Clinic Specialist Nurse

D rang to discuss Rachael's bowel movements and feed. She requested Rachael's GP's telephone number. D will be writing to Rachael's GP requesting an enema.

Visit from Occupational Therapist

A visited Rachael to see if Rachael could still use her bed. After Rachael was hoisted onto the bed it was very clear that the bed was not safe as it does not provide any support to prevent her from falling out.

A said that she will investigate the possibility of getting a chair for Rachael to sleep in. She will be in touch about this as soon as possible.

A also said that she will order some small slings to replace Rachael's old ones.

Appointment at Urology Clinic

Rachael attended her routine catheter change appointment. The procedure went smoothly. S said that the new yellow catheters are a lot easier to remove although they tend to block up slightly more than the other catheters. Another appointment was made for five weeks time.

Visit from Palliative Care Nurse

C came to visit Rachael to check on her progress. C and Rachael discussed the ongoing problems with Rachael's feed and stomach pains.

Rachael also told C about her sleeping difficulties and the knock on effects that this creates. C said that she would speak to Rachael's GP and to Dr P and try to find some suitable sleeping tablets.

There is also a prescription at the GP surgery for Prozac in liquid form.

C also said that she will contact J, the District Nurse, regarding syringes and A, the Occupational Therapist, regarding Rachael's bed and new slings.

Visit from Palliative Care Nurse

C visited Rachael to see how she is getting on. Rachael was asleep at first and C discussed the current situation with Rachael's PA.

When Rachael woke up C and Rachael discussed the ongoing problems with Rachael's feed and her stomach and head pains.

C altered Rachael's drug regime and added 20ml Paracetamol before each session of drugs. She also suggested taking Movicol again to aid bowel movements.

Visit from Dietitian

A visited Rachael to discuss some options for her feed. A suggested using a bolus feed with bottles of the same feed that Rachael is currently using.

A mixed 50ml of feed with 50ml of water.

Rachael said that she was concerned about how labour intensive bolus feeding would be. Rachael's PA asked if a bolus feed stand is available. A said that she will contact M, the Nutricia nurse, who will arrange an appointment to demonstrate how to set up and use the bolus feeding stand.

A will order a delivery of individual bottles of feed. Opened bottles can be kept in the fridge for 24 hours.

A then took details of Rachael's main medical contacts so that she can update them on her progress.

Visit from Occupational Therapist

A visited Rachael to try to adjust Rachael's bed. She wanted to lower the bed on a slant and let Rachael try it but there wasn't a key on the bed to unlock the remote control. A said that she will come back next week with a key and try again.

A said that she will look at other alternatives, such as a reclining chair, if the slanting bed does not work. In the meantime she is going to speak to other Occupational Therapists who are assisting MND patients.

Phone call from Dietitian

V telephoned Rachael to see if she had received and tried the Farrell bags. Rachael said that she had and that they did not work for her. V said that she was running out of options. She said that she will speak to other MND Specialist dietitians for further ideas. In the meantime she requested another appointment to discuss further with Rachael.

Home

Rachael is worried about her feed. She only really noticed it when she tried the little bottles during the day that she was still tasting it hours later. Since then it was really noticeable with the stronger two in one mix but even her usual feed taken overnight is smelling and tasting in the afternoon. 

The consistency of her saliva has changed or rather a new secretion has been added that is similar to feed. Rachael worries that she is not digesting it and she wonders if Domperidone could affect her digestive system. 

Rachael thinks it is more to do with MND shutting down her digestive system. Rachael is still losing weight.

Rachael needs her PAs to take it seriously so that she doesn't have to panic. Rachael wants her PAs to give her feed as routine.

Rachael needs proper advice from the dietitian. She was told that if she could not tolerate enough feed there is nothing they can do.

Home

Every time Rachael has a feed during the day she feels that it is rising through her throat into her mouth when she has a flush. This has been happening since she went onto her new drugs. She would like this to be mentioned to her GP next time she sees her.

Phone call from Dietitian

A telephoned Rachael and said that she would order seven days worth of Farrell bags for Rachael to try. She did stress that the instructions should be followed strictly. The order will be delivered early next week.

Phone call from Palliative Care Nurse

C telephoned V, Rachael's dietitian, to tell her that the 2cal feed is giving Rachael a bloated stomach. The dietitian explained that the 2cal feed was a last resort and that the bloated feeling may last up to twenty four hours.

Rachael asked if a different giving set would help and showed C a Farrell bag and giving set on the Internet.

C phoned V again to see if she can arrange a different giving set for Rachael. C also asked what is the minimum amount of calories that Rachael needs daily. V said 700 ml which is roughly 1050 kcal. V will get in touch with C who will then contact Rachael.

Letter from Dr P

Rachael received a follow up letter from Dr P. He wrote that Rachael had mentioned her constipation and stomach ache at their meeting and that he had prescribed Movicol as a softener.

They had then discussed her medication and bolus feeds. He also discussed the Salbutamol nebulisers with Rachael and advised on frequency of use as she felt that they were too effective in that they make mucus come up in chunks.

He had then suggested using an anti-depressant to relieve Rachael's anxiety, she was keen to try this when her stomach feels better.

He mentioned that Rachael is due to see her physiotherapist soon regarding her knee and neck pains.

Dr P will see Rachael again in six weeks time.

Letter from Dr E

Rachael received a follow up letter from Dr E about the multidisciplinary meeting that had taken place at Rachael's house.

He said that the rationale behind the meeting was to explore Rachael's options given that the CCG would not consider training carers for Rachael in advance of a tracheostomy being sited. A prolonged stay in hospital would be required while the care plan was put into place, assuming that Rachael was fit enough for the procedure to be carried out. Also the potential for infection would complicate the provision of invasive ventilation.

He said that this is sad news for Rachael as even a hospital stay of a month or so would be intolerable for her. Rachael concluded that she would not want to go down this route and gave the impression that this was a position she was very unhappy with.

He then mentioned the support that Rachael gets from Dr P and the Macmillan nurses.

He gave Rachael advice on using Difflam spray to soothe her mouth and to put the Hyosine patch on her shoulder or to cut it in half.

He advised to use four drops a day of Citalopram to try and reduce the UTI side effects.

He also said that he will ask a dietitian at SR Hospital whether they have an alternative to the bolus feed that Rachael can consider.

He said that he will contact AM regarding Rachael's new bed when she returns from annual leave.

Dr E looks forward to seeing Rachael at her next clinic appointment.

Visit from Dietitian

V telephoned Rachael to see how she was getting on using the bolus feed. After explaining that 15ml of the bolus feed made Rachael feel bloated and unwell, it was decided that V would arrange for a week's supply of a new feed to be delivered next week.

The new feed is called TwoCal HN. This feed is to be given via pump. 700ml a day will provide Rachael with the nutrition she needs. Val would like to be informed how this trial goes as soon as possible.

Catheter change at W Hospital

Rachael attended her catheter change appointment at W Hospital. The procedure went smoothly and S removed the catheter easily. Another appointment was made for five week's time.

Whilst we were at the hospital we got a new tube and filters for Rachael's cough assist machine. We still require a replacement for the plastic covering around the tubing as this is broken.