Clinic at H Hospital

Rachael attended her appointment at Dr E's clinic at H Hospital. 

Dr E is going to send a letter to Wheelchair Services requesting an urgent appointment for an assessment regarding Rachael's wheelchair controls. He will also be sending a letter to Rachael's urology consultant, Dr G, about her referral to Wy Hospital.

Rachael saw S the physiotherapist at the clinic. She is going to phone K the community physiotherapist to arrange some shoulder supports for Rachael. She said that Rachael should speak to S at hydrotherapy to see if she could do anything about the weakness in Rachael's arm, but she did not hold out any hope.

She confirmed what K had said, that the shoulder muscle is very weak.

Rachael also spoke to B, the speech therapist. B said that she knows of another gadget called Mega B that could be provided for Rachael to help with her communication. It is a battery operated device that is smaller than the E Tran frame and it is more user friendly. B is going to contact L, Rachael's speech therapist, to arrange provision of this device.

Visit from Wheelchair Services

S from Wheelchair Services visited Rachael to carry out a service on her wheelchair. He adjusted the armrests by lowering them and moving them back. Rachael said that this was more comfortable. 
Rachael then explained to S that she could no longer use the wheelchair controls due to the weakness in her arm. S suggested that Rachael should go for a wheelchair assessment at Preston so that an alternative way can be found for Rachael to control her wheelchair. He said he would arrange an appointment for an assessment for Rachael on a Tuesday.

Rachael asked S for a spare cover for the Roho cushion, he said he would also arrange this for her.

phone call to Smart Box Customer Services

Rachael's Tobii eye gaze computer stopped working at 7am this morning, 30th October 2012, and would not turn on again. We contacted S at Smart Box customer services and she gave us step by step instructions to try to get the computer working. The instructions were as follows:-

1. Unplug the Tobii eye gaze at the back.

2. Remove both batteries.

3. Press the power button ten times.

4. Plug in the Tobii eye gaze without batteries and switch on.

The computer switched on but turned itself off immediately. 
S advised us to repeat steps 1, 2 and 3 and then plug in the computer and leave it for half an hour before turning it on again. This was successful and once the Tobii eye gaze was working the batteries were replaced.

Neutral

I didn't realise how much I relied on muscles that I would have rated as next to useless. My shoulder and arm ache constantly and I am extremely tired all the time . I didn't make it to my friend's birthday party this evening. I am sick of letting people down. I know she will be fine about it but all the same...

Visit from Physiotherapist

On Thursday 18th October Rachael complained that her arm was weak and she was struggling to use her wheelchair control when moving forwards. By Monday the weakness in Rachael's arm had worsened to the point where she was unable to move her wheelchair in any direction or to recline her position or to raise her legs.

Rachael's PAs had to adjust her seating positions and move her manually from room to room. 

This is a particular problem when Rachael needs to use the car as the ramp is quite steep and the wheelchair is heavy and fiddly to manoeuvre safely.

Rachael's hydrotherapy session was cancelled on Monday 22nd October so an emergency appointment was made with the Community Physiotherapist. 
K checked Rachael's shoulder muscle and bicep. Although these muscles were very tense she did not find any damage. K concluded that the weakness was due to the progression of Rachael's Motor Neurone Disease. K arranged an emergency appointment with wheelchair services to investigate alternative wheelchair controls.

Letter from Dietitian

Rachael received a letter from A regarding the review that took place at Rachael's home on the 16th October.

The letter contained an assessment summary which said that Rachael's reported weight was normal and stable. The letter stated that Rachael is receiving 700ml Nutrison Complete via her rig and that this appears to be meeting her nutritional requirements as her weight is stable. It stated her fluid intake via the rig. 
It went on to say that Rachael's bowels are opening normally and urine output is good. It said that the stoma site is good, no concerns expressed.

Then a treatment plan stated that the goal was to meet nutritional requirements for weight maintenance and fluid requirements for hydration via the enteral route. 

A listed some targets re Rachael's feed and liquid intake and the monitoring of Rachael's weight, skin condition, stoma care and bowel and urine output.
Then there was a note of Rachael's presciption.

The letter then stated that Rachael will have another review in three month's time and to contact A in the mean time with any queries.

Rachael's recollection of the review differed from what was in the letter and she was offended by this, particularly as she was referred to as a male in the letter.

Visit from Dietitian

A came to visit Rachael. A new review has come out and she had to confirm with Rachael in person before completing it. 

She went through Rachael's weight fluctuation. Rachael told her that although she has not been weighed successfully regularly she has lost weight but she is not concerned. Rachael told A that she can adjust the amount of feed she has accordingly. Rachael confirmed the amount of her fluid intake  and said that she only eats a little just for the taste. A was happy to leave the amount of Nutrison Multifibre Complete at 700ml. 

Rachael also told A that she supplements the feeds by having flushes of vitamin enriched liquid such as Marmite, fruit juice or thin soup.

A then told Rachael that she will be leaving in November but she doesn't know if anybody will be taking over. If Rachael needs their services a duty officer will always be available.