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.

Visit from Dr E, Lung clinic Specialist Nurse, Palliative Care Nurse and District Nurse

Rachael had a visit from her care team. D told Rachael that she had heard from the Board regarding Rachael's request for a Tracheoscopy.
The Board have refused Rachael's request for her staff to be trained prior to her having the procedure. They had insisted that Rachael's staff should be employed by an agency after the procedure was completed before they would be trained.

Dr E confirmed this and added that the whole procedure could involve Rachael being kept in hospital for 6 to 12 months. 
Rachael said that she was being forced to choose to die and said that under these circumstances she would choose not to have the procedure.

D said that she would send Rachael a copy of the letter and email regarding the Board's decision on the Tracheoscopy procedure, as long as the Board had no objection to her doing so.

Dr E then talked about what else could be done to help Rachael. After some discussion he said that he would personally contact Wheelchair Services to arrange a meeting with a wheelchair specialist Occupational Therapist. He will also contact a dietitian to meet with Rachael. He advised Rachael to stop taking the Salbutamol nebulisers if she found them too strong.

C gave Rachael a prescription for Difflam spray to help with her sore mouth.

The Scopoderm patches were discussed. Rachael was advised to cut them in half and/or to put them on her shoulders if they seemed too effective or strong.

visit from Physiotherapist

K met Rachael as she arrived for her appointment with Dr P at S Hospice. K had brought a new neck brace and some tubing and filters for Rachael's suction machine. K said that she would contact Rachael the following week to arrange some physiotherapy for her. K said that she would bring a colleague with her and they would work on Rachael's neck, shoulders, arms and ankles.

Appointment at S Hospice

Rachael attended S Hospice for her appointment with Dr P. Rachael and Dr P discussed how she is feeling at present. They reviewed the feed situation, Rachael said that the bolus feed did not help her as she felt wretched and bloated all day after only 15ml.  She does not want to use this any more.

Rachael then told Dr P that she has bad stomach pain and constipation. He suggested that she could try using Movicol again as this will soften the stool, it will take a while to work. He recommended that she takes four sachets a day to begin with and then to take less as it begins to work. Rachael can increase the amount taken when necessary. Rachael agreed to this. 

Every time Rachael uses the nebuliser she coughs all day. Dr P recommended reducing Salbutamol to 2.5mg and to use less frequently. It is less frightening for Rachael when we can suction well, skills vary with the suctioning.

Rachael told Dr P that her feelings of anxiety and her bleak thoughts are getting worse. Dr P  asked her how often she uses Lorazepam. Rachael said that it is different from the blind panic that she uses Lorazepam for.  Rachael said that she can be easily distracted, 'power of Disney' helps. Dr P then suggested taking a regular anti depressant/anti anxiety drug. Rachael said that she was worried about possible side effects. Dr P recommended starting on a small dose of Citalopram drops once a day through her rig and to increase the dose if tolerated. Rachael has used this before, it was stopped by her GP due to stomach problems. She will start again when her stomach feels better.

Another appointment was made for six weeks time.

Visit from Dietitian

V came to visit Rachael regarding the problems Rachael has been having trying to fit her feed in. Rachael and V talked about bolus feeding and they decided that this may be a good option.

V is going to arrange a trial delivery of one week's supply of Fresubin 2Kcal drinks. Rachael will require 3 x 200ml bottles a day. This should provide Rachael with 1200 kcals per day.

The bottles will be gravity fed through Rachael's rig. The trial delivery will come with the original Nutricia delivery. Syringes will also be provided.

Visit from Palliative Care Nurse

C made her weekly visit to check on Rachael. Rachael and C discussed how Rachael has been feeling. Rachael is producing a lot of of saliva. C prescribed Scopoderm patches to alleviate this. C is also going to ask about eye drops to control the production of saliva.

Follow up letter from Dr P

Rachael received a follow up letter from Dr P after her visit to S Hospice. He wrote about the changes that he and Rachael had discussed regarding the times that she takes her medications.

He then wrote about the advice that he had given her to help with anxiety, to take Lorazepam more regularly and to try Domperidone for her nausea and sickness feeling.

He then went on to say that he and Rachael had discussed her feed and that the MacMillan Nurse would be contacting the Dietitian to arrange for Rachael to try bolus feeding.

Visit to S Hospice

Rachael attended her appointment at S Hospice to see Dr P. They discussed how Rachael was feeling and then Rachael asked Dr P if he could help with her concerns about the timing of her prescription drugs and fitting everything in.

Dr P said that Rachael could move some medications to lunch and bedtime. He also suggested that a bolus feed may be helpful as it would give Rachael more time to use her NIV. Rachael said that she will give this a try. Her dietitian will be visiting her to arrange this.

The plan for Rachael's new drug timings is as follows:-

The morning Ferrous Fumate, Senna and Lansoprazole can move to lunchtime. The evening Pregabalin and Lansoprazole can move to bedtime.

That way:-

8am.

Riluzole, Pregabalin, Baclofen, Mucodyne.

1pm

Mucodyne, Ferrous Fumate, Senna, Lansoprazole

6pm

Riluzole, Baclofen, Mucodyne

Bedtime

+/- Oramorph, Pregabalin, Lansoprazole

Rachael can also have 0.5mg Lorazepam mid-afternoon to avoid the jitteriness that she feels around 3.30pm. She can also have another dose in the evening if she wants it. Dr P said that Rachael can take the Lorazepam under her tongue instead of through her rig if she wants to. He said that it would be absorbed into the bloodstream more quickly like this and would avoid the need for more liquid.

He recommended that Rachael tries Domperidone for nausea and fullness feeling. Rachael agreed to this.

Dr P will be writing to Rachael's GP with this information.

Another appointment was made for two weeks time.

Visit from Palliative Care Nurse

C made her weekly visit to check on Rachael. J, the District Nurse, did not attend as it was her day off.

C said that she would discuss Rachael's concerns about the timing of her prescription drugs with Dr P at S Hospice prior to Rachael's visit.

C told Rachael that she had received an email from Dr E regarding a meeting to be arranged with Rachael later on in July. Rachael said that she had not received any information about the meeting so C said that she would make enquiries to confirm and then let Rachael know.

Appointment with Podiatrist at B Health Centre

Rachael attended her appointment with the Podiatrist at B Health Centre for her annual check up. 

The podiatrist checked the blood flow in Rachael's feet and their sensitivity. He said that both of these were fine.

He then trimmed Rachael's toe nails and said that whoever had been filing them had been doing a very good job.

He advised Rachael to come again in twelve month's time for another check up.