Dehydrated

13^th October (Sunday)

Two nurses hoisted Rachael to change her pad and clean her with I's help.  Rachael reported that she felt dehydrated at 4.30pm.  The nurse made a note of this and said that she will also inform the doctor.  The nurse came back to say that a doctor will be coming to see Rachael re being dehydrated.  He may need to put a IV line in to hydrate her.  Rachael wants to make sure that the TPN team are made aware of what happens.  The H8 nurse came at 6.30 to change Rachael’s feed.  She will make sure that something is done about Rachael’s dehydration.  Rachael’s syringe driver was changed at 6.50.

Blood thinners..

12^th October (Saturday)

Rachael finally received her Citalopram liquid and took 0.25ml.  The nurse was asked to check if it was ok to take the Citalopram at the same time as Lorazepam and whether there would be any interaction between the two drugs.  She was told that it was fine to use both and that there should be no side affects.  Rachael has been having problems with her catheter again.  Nurse L gave Rachael a bladder wash but it doesn’t appear to have improved Rachael’s discomfort.

Nurse L also informed Rachael that, as her blood base line readings are as they should be if she were at home she no longer is being prescribed “Blood thinners”. Rachael however thought Dr A had said that she should continue with the medication.  This will obviously need clarifying with Dr A.

11th October - hospital stay continues - preparations for going home...

DM rang saying she works in partnership with DF.  DM said she will ring and inform the hospital of what can be put on Rachael’s nose to ease the pressure when she is using the Bipap.  She also said she would get a doctor to have a look in Rachael’s mouth as she believes Rachael may have mouth thrush.

E arrived at 8.15am.  Nurse L came in to discuss Citalopram dosage.  L said she would get the pharmacist to visit this afternoon to answer any queries that Rachael had to ask.  The Doctor saw Rachael on the ward rounds at 1.15pm.  He looked in Rachael’s mouth but could not see any abnormality.  He did point out Rachael’s lips were a bit chapped but stressed this could be remedied with lip balm.  Rachael explained how much her shoulder was hurting her.  Rachael asked if it was possible to have an injection to dull the pain in her shoulder.  The doctor said he would look into it.  Rachael then asked when she could go home.  The doctor said Rachael needed to wait 4 -5 days whilst everything was readied for her to go home.  Rachael got very upset and said she wanted to spend as much time at home with her daughter as possible.  The doctor said he would double check with Dr A.

J, nurse came to take blood from Rachael’s Picc Line.  Rachael stressed that H8 have been adamant about being the only department to deal with the line to prevent infection and clotting.  J said she would have to get somebody to take blood via normal methods.

Dr S, Palliative Care Team visited Rachael to see how she was doing.  Rachael initially discussed how painful her shoulder was.  Her PA asked about injections to numb the pain directly at the site.  Dr S said this was a very difficult procedure and had to be handled by the pain team.  She stressed it would not be impossible for Rachael, just very difficult to numb the right nerve.  Dr S received a phone call from Dr A.  When Dr S returned, Rachael told her that she had been prescribed Citalopram to try and combat her emotional ability.  Rachael also explained that the oxycodone seemed to be reducing the pain in her shoulder, when positioning of a physio hadn’t.  Dr S then explained what Dr A had told her.  He had said that Rachael needs to stay in hospital a few more days so they can see if Rachael tolerates feed and the rate of feed through the PICC line.  He said they need to arrange delivery of a fridge to Rachael’s home, have the correct feed made up and organise when BUPA nurses will be calling.  Rachael was less upset once she knew what needed to be done to get her home.   She asked DR S to inform all the nurses that the PICC line must only be dealt with from people from ward H8.  She said that if Rachael ever gets frustrated or needs someone to talk to ring her on her hospital extension at anytime.  At 3pm the pharmacist visited to discuss the Citalopram.  Rachael explained that she was concerned about the imprecise measurements given by the dropper.  The pharmacist said she would look into whether tablets could be crushed and dissolved.  At 3.30 pm a student doctor came and asked to take Rachael’s bloods.  He looked at the mark on the back of Rachael’s hand and asked if people struggle to take blood from her.  She said the mark was from a canulla and requested blood be taken from the back of the wrist.  He said he would get a nurse to come back.

D, nurse came in to stop machine from beeping.  PA stressed it must only be touched by H8.  D said he will continue feed by another 50 ml, meaning Rachael had had an extra 150ml today.  He said H8 will be up shortly to change bag over.  Pharmacist came back to see if Rachael would feel better about mixing drops with water.  Rachael said she would be happier if she could get a specific volume so the measures are constant.  The pharmacist said she would measure out the 4 drops and get a specific volume.  A few moments later the pharmacist expressed difficulty getting a consistent drop of Citaloprom.  She said she would discuss with colleagues and get back to Racahel with a definite action plan.

The pharmacist rang at 4.45 to say that Rachael’s prescription of 10mg actually equates to 0.25ml.  She said she would try and speak to Dr E over the weekend about upping Rachael’s dose to 2.0mg/0.5ml as they definitely have a syringe to measure that amount.  She also advised Rachael to try the 0.25l in the morning mixed with water and flushed.  Rachael said she would try this.

K from Ward H8 came at 5.10pm to change Rachael’s TPN.  She said the feed would be on over the next 24 hour period and stressed a nurse from her department would change the feed over at roughly the same time everyday.

At 6.00pm Citalopram tablets arrived from the pharmacy.  Rachael spoke to the nurse and said she will wait for drops as she now has a volume o.25ml.  The nurse said she would speak to pharmacy and get back to her in the morning.  This can be administered using a 2.5ml enteral syringe.

PICC Line procedure was a success..

10^th October

Nurse came to take bloods at 11.30 wanted blood from right arm so results would be correct.  Rachael wasn’t happy about this so nurse went to speak to doctor and decided they would just take them from the PICC line.  S arrived to come down with E and Rachael to have the Picc line.  Everything went smoothly apart from the fact that they couldn’t x-ray Rachael in her chair.  She had to go in the bed but was kept elevated as much as possible.  Rachael’s arm is quite sore but the actual Picc line is fine.  We have been advised not to touch the Picc line and to leave it to the professionals.  Brother and B visited, so put a smile on Rachael’s face.   When giving Rachael her bedtime drugs the rig kept getting jammed – only solution at the time was to force back then try again.  This was successful! Citalopram has been prescribed to start on 11^th October says 4 drops on bottle but nurse advised 10 ml.  Double checked and on their system it says pills so as liquid has been given, nurse advised wait for later on to get correct dosage.

Visit from Dr E - hospital rounds (9th October)

Doctor – morning rounds.  After telling and showing the doctor how swollen Rachael’s feet are he said there wasn’t a lot he could do,  adding that water tablets wouldn’t help as the swelling is due to positioning.  I explained that R had been put on water tablets and asked if they could be stopped – he was happy for that to happen.  The Doctor reassured us that Rachael is on the licat for a new PICC line tomorrow (10^th October).  We asked if he had had any joy finding out what time the procedure will be taking place – he said he had phoned but couldn’t give a time.  I asked if he would try and find out if it would be am or pm at least.  We explained that R was still having problems with R’s catheter as it doesn’t appear to be draining properly.  He said he would try and get someone from urology to come and have a look.  Just as they left R was in pain with her stomach.  I had tried to release some air with no joy so Rachael asked me to ask the DR to come and have a look, he had a fell and reassured us that it was just air after a few more attempts to release the air it worked.

Dr E and S H S (MND Nurse) came to see Rachael following S's chat with Rachael yesterday.  S ran over what her and Rachael had talked about yesterday (8^th October) with Dr E and S trying to find solutions.

Dr E wasn’t sure what to suggest regarding Rachael’s shoulder pain so said he would speak to physio.  He ran over what would happen tomorrow when Rachael has a new PICC line put in to make sure Rachael was happy.  We asked if he was able to find out what time it may happen but he had had no joy.

Both Dr E and S were keen to try and help Rachael control her emotions.  They strongly recommended trying an anti depressant drops.  Rachael has tried in the past and wasn’t keen but is willing to try again.

The physio from the MND clinic came to see R regarding her shoulder after taking a look she asked R if she would consider an injection in her shoulder to stop any pain.  R said yes so she said someone would do it soon, she also asked if Rachael would mind if she rang wheelchair people to see if there is a better back cushion that would have less pressure.  R was happy for her to do this.  I asked if she would have a look at Rachael’s swollen feet.  She confirmed that the swelling was water, she said the best thing we can do is massage the feet pushing the water up R’s leg.  This seemed to work using a little cream to stop any friction.

I have tried to phone D F re Rachael’s mask on bipap causing Rachael to have some cuts in Rachael’s mouth (inner lip) there was no answer so I will take her number and phone again tomorrow.

Cold feet..(8th October)

E arrived at 8am greeted by S who explained procedures.  R was hoisted at around 10am due to by passing fluid onto pad rather than through catheter.  E spoke to nurses P and A who have requested someone from urology department to come and look at the catheter to see why Rachael is bypassing.  Macmillan nurse came to see Rachael to check about discomfort.  Told her she was still having trouble with her left shoulder.  She advised she will speak to someone regarding physio.  3 doctors came in to explain about Rachael having an x ray and pick line done on Thrusday.  Rachael requested a specific time as she wants S to be present.  Doctors said would ring and find out.  Rachael was hoisted again, this time with much less messing about by E and P (nurse) at around 2pm as pad was wet again.  S the MND nurse spoke with R regarding 3 main topics – shoulder pain, emotions and the procedure with the pic line.  R got very emotional explaining she can’t stop crying.  Brother visited at 7.30pm R has been complaining about her cold feet especially her right one.  Brother spoke to the nurse to see if any other way of keeping feet warm.  They said to keep feet raised and they will inform doctor in the morning.  Also bipap starting to cut into R’s nose.  R requested to ask Z to speak to D F about it.  We then resorted to battery socks but due to swollen ankles socks were causing discomfort.  Sister saved the day by handing over the ones she was wearing when visited with B.  Before bed checked leg bag and was empty and Rachael was bursting for a week.  I rubbed tube and could feel it blocked.  Spoke to nurse who came to syringe the catheter but was no joy as it was blocked up so the nurse put an urgent call out to the doctor.  By then Rachael had already relieved herself.  Rachael was hoisted. Still no sign of doctor by 11.15pm.  Doctor came at 11.30pm and put a new catheter on.

6th October

M arrived at 8am.  Racahel was in pain with her shoulder, arm, bottom and neck.  She had pain relief throughout the day.  Rachael was hoisted and repositioned at 12pm.  Rachael asked again for the IV nurse to look at her PICC site as it is still aching.  The nurses were unable to contact her and will try again tomorrow.  S and E visited Rachael in the morning and R visited later on in the afternoon.

Hospital stint continues - 5th October

PA I arrived at 8am and took over from Z.  At 9am Rachael was hoisted and given a freshen up.  Unfortunately when she was put back in her chair her pad was causing a burning sensation on her bottom.  Nurse P and I then re-hoisted Rachael to correct this problem.

Rachael’s arm where her PICC line is sited has become sore.  The IV nurse took a look and decided there was no sign of infection.  She suggested the problem was being caused by irritation from the line within the vein itself.  She recommended warm compresses be applied around the IV site to ease the pain.  She said she would ask the nurses to organise this (10.30am) As of 14.40 no compresses have arrived.  At 15.30 the staff nurse, after chasing her up arrived with warm compressers in the form of pieces of gauze soaked in hot water.  These were totally unsuitable for purpose.  Rachael’s arm has continued to be sore and is gradually worsening.  The IV nurse needs to be contacted tomorrow to try to resolve this problem.

3rd October

E arrived at 8.30am. S gave a list of instructions which must be passed on.  Dr A is to visit Rachael to discuss installing a PICC line. S needs to be advised when the appointment is made for.  The nurses have requested we use the fold up bed at night.  Blankets can be found on the bed.  A nurse must be called for extra pain medication, cleaning and hoisting, water, if the suction machine needs emptying, alarms on the machines go off.  Also the nurses are weighing Rachael’s urine so please advise a nurse when you have emptied her leg bag.

29th September Cough assist stopped working

M arrived at 8am.  Rachael had had breathing difficulties during the night.  Her cough assist machine isn’t working.  D and R arrived.  W hospital could not be contacted til tomorrow.  The nurse sent for a physiotherapist to come and assess Rachael’s breathing and to use the cough assist machine.  Dr B came to visit Rachael.  He listened to her chest, which was ok.  He also checked her bloods.  Rachael requested a hoist so that she could be cleaned.  She had to wait for over an hour for this.  The physiotherapist came and assessed Rachael.  She used the cough assist and suction machine.  She arranged to come back this afternoon before 4.30pm and then send a night physio at 10.30pm .  Rachael was getting very panicky and upset due to lack of breath.  The suction machine was used repeatedly

28th September - still in hospital..

I arrived at 8am.  The nurse arrived with a full set of Rachael’s drugs that Rachael had already had.  These were sent back.  Rachael had a Phosphate tablet as her salt levels were low.  The site of the driver entry on Rachael’s arm is sore and twitchy.  Rachael asked the nurse to take a look and also get a bag from the pharmacy for the driver machine.  Nurse N moved the driver needle further back on Rachael’s arm.  Rachael refused the suggestion that the needle be placed on her left arm or stomach.

At 10.30am Rachael suffered a bladder spasm which required hoisting.  Unfortunately it was staff break time so Rachael decided to wait rather than hoist with only one nurse.  Rachael has been struggling with her breathing.  Nurse N was asked to chase the Palliative care team at W hospital but nobody available until the morning.  Nurse N also forgot to order a driver bag.  She said she will do this in the morning.  Rachael’s new driver site has become sore so it was moved to her right thigh.  This needs to be monitored.

27th September - hospital stint continues - visit from Dr E

27^th September

On morning rounds the doctor said Rachael’s nutrition needs building up so she should continue with the feed through the PICC for at least a week, whilst a long term solution is found to Rachael’s stomach problem.  The doctor was unsure as to whether Rachael would ever be able to find feed via the rig again.  Unit a solution is found Rachael will remain on a drip with additional vitamins.  Rachael is tolerating the PICC feed.  The palliative care nurse came to see how Rachael’s pain is today.  She was happy that Oxycodeine was working better than Oramorph but thought Rachael would benefit from a higher dosage via syringe driver and stressed she is still happy for Rachael to have an extra dose whenever needed.  Rachael explained that she is in pain after meds are given through the rig.  The nurse promised to look into this to see if there is any other way drugs can be given.  Rachael asked if she could ring Wythenshawe re cough assist machine.  Rachael said the pressure nees readjusting.  After discussing Rachael’s bowel movements, the nurse thought Rachael may have a blockage, so she has arranged for a rectal examination next time Rachael was hoisted.  Rachael has been biting inside of her mouth.  The nurse recommended bonjela.

After reading Rachael’s notes Dr E had a look at Rachael’s drugs list to see if he could reduce the amount going through the rig.  Dr E decided to stop the Riluzole, ferrous fumerate and Domperidone for the time being.  He also asked Rachael about end of life matters.  Rachael got upset and asked to speak to him on Monday or Tuesday.  Rachael needed hoisting so Dr E volunteered to do the rectal examination whilst she was in the air.  He said he couldn’t feel anything so he was happy that Rachael didn’t need to take suppositories/ laxatives over the weekend.

Pain relief - 26th September

At the morning visit, the doctor decided Rachael needed some vitamins before they start trying to feed down the new PICC line.  The doctor said she would need to take these for the next four days via a drip.  The macmillan nurses visited to discuss pain management.  Rachael explained that Oramorph via rig wasn’t helping with the pain, it caused more pain forcing Rachael to sleep through it.  The doctor decided to try Rachael on Oxycodeine; to be given as a background pain killer through a syringe driver over a 24 hour period.  Extra pain relief can be give an Rachael’s request through the butterfly needle in Rachael’s leg.  Macmillan nurse said they are in hospital all week if Rachael needs anymore questions answering.  Rachael had some bloods taken through the PICC. Syringe driver set to 0.38ml/hr extra pain relief Oxycodeine 1.25 mg

25th September - hospital stint continues..PICC line procedure

Rachael was taken down to x ray via porter.  After a 30 minute wait, Rachael entered the x ray room.  After giving lengthy directions on how Rachael must not be lay down under the X ray due to respiratory problems a nurse emerged to help hoist.  Once pillows had been stacked on table, Rachael was hoisted.  The pillows were inadequate and after a few minutes of trying to support Rachael’s head, Rachael asked to go back in the chair.  The radiographer explained that once the Barium was in Rachael’s body it could take upwards of 2 hours to complete the procedure, with x rays being taken every 20 minutes.  Rachael protested that A&E had said she could be scanned in the chair.  The radiographer explained this would never have been possible.  Rachael felt she would be unable to last for 2 hours, being hoisted onto table of back into the chair.  Rachael was very distressed upon getting back to the room, a nurse came to scan Rachael’s arm to see if a Picc Line could be put in.  Rachael had some difficulty in putting her arm out to a right angle.  The surgeon said a main PICC line would not be possible.  This distressed Rachael greatly.  After some thinking the surgeon once again scanned Rachael’s bicep and said he could possibly put in a peripheral line.  He enlisted the help of a student doctor to hold Rachael’s arm in place throughout the procedure.  He said he would be back later after an x ray to see if it had been successful.  The X ray team came with a mobile machine.  Rachael was hoisted into bed of an x ray taken.  The surgeon came back almost immediately saying the Picc line was in her jugular vein, not her chest as he had wanted, meaning he would need to pull some out.  He did stress the line would still be usable despite it now only being a mid line.  Procedure was carried out with PA holding Rachael’s arm in place.  Rachael was shattered after the days hoisting and was up and in pain every 15 – 45 minutes throughout the night.

PICC line discussion - 24th September

Rachael was moved to a room -  Rachael had a rough day.  Nurse T was very lovely and treated Rachael like a human being rather than talking down to her.  Rachael was asked if she wanted a procedure to enable her to be fed through a PICC line.  It also meant that they could administer drugs and take blood more easily.  Brother read out the information and signed on her behalf after Rachael had confirmed the Lydocaine would completely numb the arm and not cause pain.

Birthday - day release from hospital

Brothers arrived on Sunday morning and took Rachael home on her birthday.  Rachael said she would like visitors to her however could we stagger them.  Rachael was met by Z and M who were able to give Rachael a shower which was something she really wanted after not being able to have one in the hospital.  My sister and her family arrived with AJ with gifts.  Later brother and Rachael’s mum and dad arrived where happy birthday was sang with a carrot cake made by AJ.  At 5pm Rachael felt she needed her drip so brother D drove Rachael back to the hospital with B followed by M.  Rachael got to the ward at 6.30pm and had to wait nearly an hour for her drip to be put on.  At 8pm S arrived but the suction machine had lost a knob on the side.  During the night the nurses complained at S as Rachael was in a female ward.  S told them that Rachael needed a room and that he needs to be there.  During the day Rachael saw a specialist in Gastro-Entereology who said that they wanted to carry out a barium test.  During the day the ward manager complained at S again that he was sat on the bed and that he was in a female ward.  S arrived at 7pm and spoke to the nurses also and told them there were 3 options: move Rachael to a room, stop complaining at S and put up with it or Rachael would have to leave the hospital.  Also S had told the ward manager that Rachael needed to be cleaned and change of her pad.  Rachael was waiting over 30 minutes  - S complained to the nurse.  Dr E visited.

Hospital stint..

20^th September

Rachael is once again not tolerating drugs, water or feed.  She is in absolute agony and seems to be producing huge amounts of yellow bile which is leaking from the rig when left open.  When we go to syringe air from the rig to try and minimise Rachael’s pain, it is pulling yellow bile out into the syringe.  The thought of having a feed is causing Rachael distress.  She simply cannot tolerate another bolus feed today.  Even Oramorph is not helping with the pain.  C left a message with dietician to call back urgently to try and help remedy the situation.

N rang re: message left and asked for specifics of Rachael’s current condition.  After running through a list of questions, N said that it sounds like Rachael is suffering from either chronic constipation or gastric reflux.  N said to get Rachael to see a doctor so they can review the situation.  N said she would ring back on Monday to see how Rachael got on over the weekend.

Spoke to Dr O who asked how Rachael was.  Explained Rachael was in constant agony today, with the pain peaking when anything is put through the rig.  Explained Rachael was also losing a lot of yellow bile through rig when its open.  Dr O said she could come and assess Rachael when surgery is finished, at around 6.30/7.00pm.  Dr O did say that she thought Rachael needed to go to hospital to be assessed.

Brother got to Rachael’s for 5.30pm.  Rachael was in a lot of pain in her stomach.  Dr O (GP) came at 6.30pm and examined Rachael.  Dr O said that Rachael was particularly sore on the stomach.  Dr explained that she could treat Rachael with other drugs however as this hasn’t worked before she recommended going to hospital.  Rachael said she hates the idea but she can’t go on like she has been.  Dr gave Rachael the option of a local hospital or SR.  Rachael chose SR.  Rachael, S and E arrived at the hospital at 8pm.  Rachael was seen by triage and her blood pressure, pulse and temperature were taken.  We were then taken to a room in Majors.  Rachael had blood taken from her although the first attempt made her vein swell and possibly bruise.  Temperature, pulse and blood pressure were taken again.  We were then moved on to the Emergency Assessment Unit room 20.  We were asked to put Rachael in a bed and they were told no as she can’t go into the bed as it affects her respiratory system.  Rachael needed to change her pad so we asked for the hoist which they brought but didn’t know how to use it.  3 nurses lifted Rachael into the bed which she was fine with for a few minutes.  The nurses with E supervising changed Rachael’s clothes, pad and dressed a pressure sore on her bottom.  She was then lifted into the chair.  S and E enjoyed a cold McDonalds meal.  At 5 am Rachael woke in pain and asked for pain relief.  The nurse told S and R they were giving her 2.5 ml or 5 of another measurement.  Rachael felt woosey and was unable to communicate.  Rachael then slept.  At 6am Rachael complained of gas in her stomach which was syringed.  At 6.45 R arrived and took E home.  At 8.00 am a new nurse introduced herself and carer arrived.

The new nurse informed us Rachael had been given 5 ml of Oramorph not 2.5 ml as they were told.  S told the nurse that Rachael can’t communicate if she is given more than 2.5 ml.  The nurse informed Rachael that she would need to go on a trolley for the x ray.  She said that it would be 5 – 10 minutes.  Rachael said that she would be fine with that.  At 8.45am I gave Rachael her morning drugs.  At 9.10am Rachael was transferred to a trolley and taken through to X Ray.  It was very traumatic for Rachael especially when they tried to lie her back.  Eventually they decided to X ray Rachael sitting up which worked.  Once back in the room the nurses and I washed Rachael and then transferred her back to her chair.  The hoist was used to lift Rachael to change her pad and straighten her blanket.  Rachael was transferred to ward L2 at 10.30.  She was placed on a main ward with 7 beds.  Rachael had 4 loose bowel movements throughout the day and night.  She was in pain through hoisting on all but the last hoist.

Rachael saw a doctor at 6pm (approx.) and after discussing her options with him she decided to go with his recommendation of staying the night and then going home in the morning so that she could spend her birthday at home.  This option  did involve Rachael returning to the ward Sunday evening so that she could be seen by a Gastro-Enterology specialist on the Monday morning.

As Rachael is currently suffering with an upset stomach the suggestion was made by J, the night nurse, that Rachael would maybe have to move to a side ward but this would require input from the Doctors.

Rachael has currently got a dressing on a bed sore on her bottom.  This area is very tender and requires ongoing care.  Rachael would like the District nurses to provide a daily drip for her as it vastly improved things for her.

Visit from GP (19th September)

A Doctor came to visit as R has been suffering from stomach pains and there’s a bright yellow fluid coming out of her rig.  The doctor was concerned about the pain that R was in and suggested a stay in hospital until the cause was found.  This was not an option so she took a swab to be tested and altered a few drugs.  R thinks it is maybe due to the latest new drug Erythomycin so she said to stop taking that and to start taking Domperedone again.  She also prescribed Ramilidine – this should help any acid.

17th September

A visited Rachael with a rep from Miller Care and a rep from The Chair Company.  They had brought a chair for Rachael to try.

After being hoisted into the chair, the chair was adjusted to make Rachael as comfy as possible and the rep took some measurements so that a chair could be made designed specifically for Rachael.

Alison then said she would put in an application to purchase the chair for Rachael and would inform her as soon as she had anything.

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.

Visit from Lung Clinic Specialist Nurse

D visited Rachael to monitor Rachael's progress with her NIV and her feed. Rachael said that the NIV is invaluable and she is happy with it. She told D that she is still having problems with her feed and is becoming scared that she will starve to death. D assured her that this is unlikely. D will try to arrange a hospital visit to look specifically at Rachael's stomach problems.

D agreed with C's diagnosis that Rachael's bowels are probably blocked and the diarrhoea is actually just leakage from behind the blockage. She advised the continued use of Movicol.

D also brought some new and smaller masks for the NIV.

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.

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.

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.

Visit from Lung Clinic Specialist Nurse

D came to visit Rachael regarding her stomach pains. She also made some adjustments to the Cough Assist machine and the NIV. She increased the pressure on the Cough Assist machine to 29 and decreased the pressure on the NIV. Hopefully this will lessen Rachael's bloating.

D also made some recommendations on the use of the Cough Assist and the NIV.
Cough Assist

1. The Cough Assist machine is to be used four times a day.

2. If Rachael's phlegm looks yellow or green ask for antibiotics from GP.

3. Use Cough Assist more frequently if secretions increase.  
4. If secretions improve go back to usual routine.

NIV
1. Try and use regularly, little and often if that is all Rachael can tolerate.
2. Open rig tube and gently try to expel trapped wind. Do this regularly to ease any discomfort.
 

Form received from Lung Clinic Specialist Nurse

Rachael received an NHS ADRT form from D. This outlines the process that is taken for making the best interest decisions in serious medical conditions in patients over 18 years. It also gives Rachael the opportunity to outline her care wishes.

Pathway form from Lung Clinic Specialist Nurse

Rachael received a form from D with details of her wishes for end of life care as they had discussed at their earlier meeting. 

Rachael's GP must be contacted if Rachael has any condition that deteriorates rapidly (within a few hours). Rachael's GP can be contacted at any time. The GP will determine what action needs to be taken and whether an ambulance needs to be called. Rachael's PAs can also call an ambulance at any time if they feel that Rachael's situation is precarious.

If Rachael is admitted to hospital her PAs are advised to inform the Lung Clinic team.

The Long Term Ventilation Service should be contacted if Rachael has problems with secretions or breathing. This is an office hours service only, contact GP at other times.

If Rachael has problems with pain, uncontrolled anxiety or unrelieved breathlessness despite cough assist or ventilation, then the Macmillan Nurse should be contacted. 
Rachael's PAs are to act as communication advocates on her behalf regarding her need for medication.

Immediate action must be taken if there is an emergency situation where Rachael cannot clear secretions or cannot manage her airway. The cough assist and the NIV must be used in these situations.

If this does not improve rapidly, call an ambulance (they can provide controlled oxygen) or transfer Rachael to hospital.

Medication will be required if secretions or breathing symptoms do not improve with mechanical intervention, Macmillan team or GP must be contacted.

General deterioration can occur slowly over time with an increase in poorly controlled symptoms, for example pain or breathlessness. Depending on the symptoms, the ventilation team should be contacted for breathing and secretions difficulties, the Macmillan team should be contacted if pain or anxiety is present.

Rachael's GP, the Macmillan team and the ventilation team will assess and refer Rachael for hospice care if necessary.

If Rachael is admitted to hospital or hospice, cough assist, ventilators and masks/tubing must be taken with her at the time of admission/transfer.

All paperwork with Rachael's care preferences/advocates must travel with her to whichever destination. Macmillan and ventilation team should be informed of any admissions or transfers if possible.

Visit from GP

Dr O visited Rachael regarding her stomach pains, as a follow up call to Dr G's visit last week. Dr O changed Rachael's medications due to her gastritis. She advised Rachael to stop taking Citalopram and increased her dose of Lansoprazole. Rachael will now take a 30mg dose of Lansoprazole in the evening in addition to her morning dose.

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.

email from Lung Clinic Specialist Nurse

D emailed Rachael to say that she has faxed a prescription for the salbutamol nebuliser to Rachael's GP. 

D has also asked Rachael's GP to prescribe a low dose citralopam, an antidepressant. D thinks that Rachael should consider taking this because it will help to manage the underlying low level anxiety that she thinks Rachael has. She has discussed this with Dr B who agrees that it may help Rachael.

D explained that chronic illness can lead to a debilitation of natural chemicals in the brain which can make it difficult to cope with anxiety.

D said that she will leave the decision about taking this medication to Rachael. It will take a couple of weeks for Rachael to feel any effects if she does decide to use it. There should be little or no side effects with this medication.

email from Lung Clinic Specialist Nurse

D emailed Rachael to tell her that Dr B would like her to try using a salbutamol nebuliser to see if it helps with her airways and any spasm that may give the sensation of mucus plugging. Dr B would prescribe a low dose of 2.5 mgs. which would be administered in exactly the same way as the saline nebulisers were given.

D said that there is a chance that Rachael may experience mild side effects with the salbutamol. She could have mild palpitations or shaking in her hands, similar to the effects some people experience with caffeine. She said that not everyone has these side effects and that they would be temporary if they did occur.

She will fax a prescription for this to Rachael's GP.

D also asked Rachael to try and track down the name of the funding commissioner for Dr B.

email from Lung Clinic Specialist Nurse

Rachael received a follow up email from D. D has tried to get in touch with the Cystic Fibrosis nurses but they are not available yet. She will keep trying.

D has spoken to Dr C about Rachael's secretions and mucus plugging that they had discussed at their meeting. Rachael had said that she felt better after taking Lorazepam even though this does not affect the mucus. D said that mucus can cause laryngospasm and Lorazepam can reverse this as it relaxes the tracheal/laryngal muscle.

Dr C said that Rachael should not worry about taking Lorazepam as she is on a very small dose and it has positive physiological benefits. Dr C recommends that Rachael doubles the dose of Lorazepam if she needs to.

D went on to say that that Dr R is not in work this week but she will speak to him about the Riluzole when he comes back.

email from Palliative Care Nurse

C emailed Rachael to ask if she had managed to arrange a visit to the Hospice.

Visit from Lung Clinic Nurse and Senior Physio

D and DG came to visit Rachael. DG brought the new cough assist machine, the NIPPY Clearway, for Rachael. DG showed Rachael and her PAs how to use the machine. DG said that the new machine will be easier for her to take out with her as it is lighter than the one she is using now. He said that he will look into the possibility of obtaining a battery for it as it only works on mains electricity at the moment.

D brought the NIPPY 3 for Rachael and three different nasal masks. She demonstrated how to use these and she advised Rachael that she would need to get used to the nasal mask gradually. Rachael can use her usual face mask or the nasal mask.

D and Rachael also discussed Rachael's drugs and their effects. D said that she will ask Dr R whether Rachael needs to continue taking Riluzole.

email from Lung Clinic Specialist Nurse

D emailed Rachael to ask her for a contact number for her social worker or whoever arranges her funding. 

D wanted to arrange a visit to bring the Nippy 3 for Rachael and to try the nasal mask for her NIV.

She also said that DG would come to do some training with the new cough assist machine, the NIPPY Clearway.

visit from Palliative Care Nurse

C came to visit Rachael. Rachael and C talked about Hospice Care. C attempted to communicate directly with Rachael using the Megabee. This was appreciated by Rachael but she found it very tiring.

C agreed to mediate with the District Nurses and to look into Hospice at Home.

visit from Dr R, Dr B and Lung Clinic Specialist Nurse

Dr B, Dr R and D visited Rachael to discuss a possible trache with her. Dr R was delayed so Dr B and D discussed Rachael's continuing breathing, coughing and swallowing difficulties. 

Dr B made some adjustments to Rachael's NIV to try to reduce the volume of air going into Rachael's stomach.
He suggested that Rachael should try a smaller nasal mask instead of the full face mask that she currently uses.

They then discussed Rachael's drugs. Dr B was happy for Rachael to continue taking 0.5mg Lorazepam PRN with at least eight hours in between each dose. He said that Rachael should back this up with use of her NIV.

When Dr R arrived he discussed in detail the pros and cons of the trache.

After lengthy discussion Dr B and Dr R agreed with Rachael that they would make further inquiries into funding and training of her staff and that this was necessary before Rachael could make an informed decision about the trache.

D said that she would come back with the new cough assist machine, the NIPPY Clearway, and she will also try out the new nasal mask with Rachael.

email from Palliative Care Nurse

C emailed Rachael to arrange an appointment for a visit.

Catheter change at Wy Hospital

Rachael attended her catheter change appointment at Wy Hospital. Stuart said that Rachael should bring her own catheter to the hospital when it is due to be changed. This can be done through Rachael's GP. The yellow catheter slid out more easily and there was less cuffing. Stuart inserted Rachael's usual catheter. He said that if there was a lot of cuffing and difficulty in removal it will be best to use the yellow ones in future.

Appointment at H Health Centre

Rachael attended her appointment at the Continence Clinic. We gave the questionnaire and the survey which we had completed at home prior to the appointment to M. We read through the questions and filled in an additional questionnaire. M queried the number of pads that we were using daily but then agreed to put us back on the system. The next delivery will be next week.

visit from Prism Medical UK

N came to see Rachael to service all the ceiling tracks and hoists. Everything was fine for another six months.

visit from Lung Clinic Senior Physiotherapist

DG visited Rachael to train her PAs on a new cough assist machine. The PAs who attended were SA, CL, ZL, RM and MB.

DG apologised because he had not been able to obtain a NIPPY Clearway cough assist machine, they are out of stock at the hospital. However, he did bring a saline nebuliser for Rachael. Hopefully this will help to loosen any mucus from Rachael's lungs before a cough assist machine is used.

DG showed all the staff how to set up the machine and they all handled the saline fitting to see how it fits together. He then demonstrated how to use it on Rachael.

When the saline dose was completed, the mask was removed and the machine was switched off. DG then demonstrated the cough assist and the suction machine.

Rachael asked DG if he could suggest anything that she could use to moisten her mouth. He said that sponges or something similar would be helpful. He said that he would contact the District Nurses to see if they could supply them. Rachael also asked DG what would be the best thing to use to moisten her lips. He told her not to use Vaseline along with the nebuliser or the NIV machine as there is a fire risk associated with this. He suggested using lip salve, E45 cream or emollient cream.

Rachael told DG about the problems she has been having after taking the Mucodyne. It makes her feel hot and puffy, emotional and scared.

DG said that he would speak to Dr C to see if there were any alternative medications available.

DG will visit Rachael when the NIPPY Clearway machine arrives in stock and he will accompany Dr R and Dr B when they visit next week.

emails exchanged with Lung Clinic Specialist Nurse

D emailed Rachael to let her know that a date has been arranged for Dr R and Dr B to come and visit Rachael to discuss her care. 

D suggested that Rachael prepares some questions for the doctors prior to their visit. 

D will not be able to come on that day but DG will accompany the doctors.

D asked about Rachael's meeting with the Macmillan team and whether Rachael had asked about what hospice provision is available in her area or has she already considered this option and decided not to investigate it any further. 
03/04/2013

Rachael replied that the date that has been arranged for the doctors to visit will be suitable for her.

Rachael then went on to say that the Macmillan team did not stay long enough and that she still wants to ask that question.
04/04/2013
D replied that she will speak to the Macmillan Nurses to try and sort something out.