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.