My name is Ruth and I worked in the Health Service for over 29 years in various clinical departments and as an Executive Assistant in the Chairman and Chief Executive Office so have a wide understanding of the workings of the Health Service. I also sit of various boards as a carer representative with clinicians, Nurses, Managers, Social Workers, Local Government representatives.
My husband Edward was a Chief Officer in local government and was involved in many financial deals. However, at age 49 he began to “lose it” in his words. He needed to be on top form and realised he was not. This was the start of his journey with Alzheimer’s. He decided to take early retirement. He did not get a diagnosis of Young Onset Alzheimer’s until age 61, as he was thought too young. He had an extensive vocabulary and one of the worst effects of his illness was the loss of speech. I will refer to this later.
It was a dark wintry evening, the worst time for “sundowning”, so Edward was very confused on the night of our first experience of going to hospital from our home. The Dementia affected him so badly that his behaviour was dangerous and although he adored me, he did not recognise me and caught me with a fierce right hook! The ambulance crew arrived and took him in the ambulance but I was not allowed to go with him and had to wait for the police who they had called. I was told I had to travel in the back of the police van! A long wait in A & E until the early hours when a bed was available was very difficult because of the Dementia and confusion. On returning home I received a phone call from the frantic staff to ask for my help as he had escaped through the fire escape. All very amusing now but not at the time. Dementia as we know can make the person unpredictable.
Edward was afraid of staying in the bedded area so the nurses enabled him to sit by a computer with a pen and paper as he used to be office based, resulting in calming him. Rigid rules were bent. I nominated the staff for a dignity award which they received.
Edward was then transferred to a community hospital. I had previously asked the consultant there if he would admit my husband for observation as his behaviour had deteriorated. A high level and powerful businessman, he had always shown courteous behaviour to the consultant and his team. Now the medical team were faced with a very challenging patient. Initially I was told that I could not visit him for several days which I found baffling and hard for myself as well as Edward. Subsequently I was told that my husband could never come home as it was too dangerous. Whilst this was safeguarding, it was harsh.
I am very keen to get the message across that carers should be listened to as we know the person with Dementia more than anyone and our “expert” opinion could help the medical staff immensely. We should be involved of all decisions as equal partners in the multidisciplinary team. A good outcome was the consultant recommending Continuing Health Care which we were awarded on a yearly review basis.
After 3 months I was informed of three care homes where Edward could be transferred. However only one was suitable. Medical deterioration for him was rapid in the first care home. He developed seizures and hospital transfer became periodic. On the first transfer to hospital the care home staff did not inform me and I arrived some time later at the hospital. When I was by Edward’s bedside the registrar said “are you his wife? He won’t talk to us”! This is because he had lost his speech as well as cognitive function.
Whilst at this care home he had a fall, probably with a seizure, which went un-noticed by the staff. I visited and immediately saw something was very wrong. I called for GP who examined him to discover he had broken two ribs, punctured his lung and had a pneumothorax. She immediately called an emergency ambulance and sent him to hospital. The physician said he could not return to that care home as they were negligent. I was grateful for this safeguarding decision. He was temporarily transferred to a second care home as the new nursing home was not ready to take anyone.
At the nursing home I helped each day with his care. Eventually the seizures became more severe and hospital admissions more frequent. Each time I was with my husband at the hospital and able to give full medical history and medications. He was losing cognitive function each time and after 4 weeks of the last admission, the medical staff confirmed he was in palliative care. He was unable to swallow or take medication. My daughters and I agreed that the nursing home was the preferred place for his last weeks and they welcomed us back. However, there was no syringe driver or anyone trained for a few days, but thankfully we were able to arrange for this. Here it was very peaceful and calm for his passing. I was able to stay with him both at the hospital and at the nursing home. Perhaps with my NHS background I was able to liaise with all the staff, from clinicians, radiologists and nurses who were extremely sympathetic.
Dementia education in our local hospitals has vastly improved. Staff at all levels are more experienced with caring for those with Dementia. However, there is room for improvement with transferring patients to and from hospital and care/nursing home. Communication between care home and hospital should be clear. In our locality we have a “red bag” system, whereby the relevant information including “this is me” goes with the patient from care/nursing home to hospital and back. This provides an insight into the person. It is always paramount to remember the person to preserve their dignity.
IT services can be developed. Involving the carer is really important. We are the “experts” as we know our loved ones the best.
In Stockport our Dementia Steering Group has members from Social Services and the Council so that information can be shared and training can be rolled out to improve knowledge.
This is of Ruth’s talk at Integration of Hospital and Care Home Services to aid transfer of Care.
Royal College of Occupational Therapists London 17th July 2019