In the community, I have been supported by social services and the local carers' organisation, which is very helpful. There are occupational therapists who assess needs and provide stair-rails, bath aids, wheelchair, commodes, etc, all vital to his care and safety, and there is the district nursing service and the incontinence service. The incontinence service provided pads, etc, but was by far the least helpful and most inefficient service, difficult to get through to by telephone, unhelpful in discussing needs, and very slow in providing much-needed items. Liaison between these various services was poor, and I had to give the same information over and over again.
He spent two periods in hospital, in October 2010 for three weeks, and in January 2011 when he was in for five weeks. His care was inadequate in many areas… In hospital I found it difficult to communicate with the doctors who were in charge. They were not easily available. They did not liaise with [the other hospital where he had been treated]. Medication was stopped or changed without my knowledge. My husband spent longer in hospital than was clinically necessary because of administrative muddles over discharge procedures. The hospital occupational therapist did not liaise properly with district nurses, and my husband’s hospital bed was provided at home without a mattress. Discharge protocols clashed. The occupational therapist said he could not order a bed until the discharge date was provided, but the ward manager said the bed had to be in place before a date could be given. This caused my husband great distress and despondency, and he has never fully regained what was lost in his mobility and continence while in hospital.