Rachael saw the physiotherapist who said she was pleased that Rachael was getting a track hoist in her living room, but was disappointed that the community physiotherapist hadn't been to look at Rachael's neck, back and hands. She said she would get community physiotherapist to contact Rachael at home.
Rachael then saw Dr E who agreed to contact the GP to confirm that he is happy for Rachael to vary her dose of Pregabalin as she feels fit. He went through full range of checks on muscle wastage, particularly the bulbar region. Discussed Rachael's fatigue and agreed to trial an additional Skype conversation before the next clinic in order to address issues for further investigation. Rachael felt this would save a lot of energy when it comes to do the actual consultation. Dr E advised that Skype could not replace clinic appointments but was keen to investigate the potential benefits. Rachael will invite Dr E to become one of her contacts and make an appointment for the first Skype session.
Rachael then saw the dietician who told Rachael to monitor her feeds as Rachael had had to throw one batch away as was having difficulty tolerating it,apart from the feed from last night. The dietician said she would get the local team to arrange an appointment to visit Rachael. Rachael said she had noticed some weight loss but there was no available scales.
Lastly, Rachael saw the speech therapist who agreed to email a wording to introduce Rachael's speech problems and if necessary, a response to strangers who Rachael comes into contact with. Bev acknowledged considerable bulbar deteriorations since they last met but was satisfied Rachael had the best available equipment to assist her. Discussed Rachael's choking incidents. Bev advised Rachael to start taking Mucodyne and stressed she would get GP to prescribe it whilst at clinic.
Rachael spoke to CAB who were of no help at all.