Over the Christmas period I have encountered the horrendous gap in mental health provision that exists out of hours. The provision is patchy during normal working weeks with many GPs unversed in the vagaries of the symptoms of depression or bi-polar and a lack of sympathy to match but the out of hours provision leaves relatives at risk of attack. They failed us on Boxing Day and could have cost me my life.
My profoundly deaf sister has suffered with mental health problems since puberty and her early breakdowns resulted in ECT treatment and considerable hospitalisation. She improved and had spells of independent living, riding a scooter, achieving the Advanced Motorists Certificate and then driving lessons and the purchase of a BMC mini. During and after my father’s death – he had looked after her following my mother’s death – she was unwell again. I had to become involved which was difficult as I had three very young children.
Some years later she lost her job – a frequent occurrence – and descended into depression. We helped where we could but, at a time when I was working full-time as a single parent, she was admitted to a special unit for the deaf in a hospital in London. Around this time she had met her husband-to-be and when she was well enough to be discharged she moved to Oxford. While she was oral, spoke and lipread, he used finger spelling but she told me they communicated well.
All seemed well and despite a couple of depressive episodes and further job losses for losing her volatile temper she led a fairly steady life. However, as old age has approached she has become increasingly depressed and anxious and some physical illness last year left her with two bleeds in her brain and the diagnosis of organic personality changes. Since, her behaviour has become typical of early dementia with periods of aggression and violence.
A week before Christmas after one of many domestic arguments, she left the marital home and refused to go back. The police were called and after a telephone call to me I agreed she could come to stay. We arranged a rendezvous with the police within their area and brought her into Dorset where I was sure I could secure better mental health provision for her. I was assured Social Services would be in touch immediately.
How wrong I was. I heard nothing. Registering as a temporary patient and getting an update of her prescription was easy but getting any social services help for her frailty such as bath seats and consideration for supervised housing was met with a blank refusal. She was not a Dorset resident.
Over the Christmas period she became agitated and rather than seeing my efforts as working towards some help for her she turned against me. It was then we realised there was more than mere bi-polar illness at this time. She was asking the same question over and over and reacting to any positive answer with negativity and then repeating previous questions as if they had not been answered. Her Parkinson’s was also increasing in intensity.
We managed her challenging behaviour by providing plenty of snacks and plates of biscuits along with regular meals. There was a definite connection between hunger and aggression. However, on Boxing Day after several physical attacks on me I contacted the mental health crisis team who advised phoning the 111 service. I began phoning for help at 2pm and was promised emergency services which did not arrive and a series of logs of our calls did not match what I had been led to expect ie that someone would come. At one time we waited three hours for the police only to find that the log showed they were not coming and I had apparently been advised to seek medical assistance. Yes! That was what I thought I was getting when I made the first call at 2pm. I was batted back and forth between police and ambulance being given a variety of excuses and no positive advice until after police attended in the evening. Their advice was that I try 111 once more. The time was 11.25pm when I was put on to a senior nursing assistant who offered a call back from a doctor. By now my sister had gone to bed and we were exhausted. The call back could come any time after two hours but not before. We would have to stay up. This was no good, I explained the patient was in bed asleep and we wanted to go to bed while she slept. The operator then adopted a sarcastic tone and said if we went to bed that was our decision. I told him to forget it. I had waited nine and a half hours and had been offered nothing. Why hadn’t I been offered the doctor call back at 2pm? The main reason for non-attendance and non activity was again that she was not a Dorset resident. However, I suspect the reason was that this was a case of mental illness exacerbated by possible dementia. No A and E unit would have dealt with our case.
In despair with a patient increasing in anger and frustration the following morning we decided to take her back to Oxfordshire. My words to my partner were to get over the county border as quickly as possible. My sister ranted at both of us throughout the journey and despite being told that she was a danger to my partner who was driving she continued.
I eventually feigned sleep which made my sister leave me alone. I told my partner to alert me when we crossed the county border. After that when she became more disruptive I warned her that now we were in Oxfordshire, her home county, if she continued to cause a hazard to our driving we would stop the car and put her on the side of the road and call the police. This had some effect and she was quiet for a while. It is not something I am particularly proud of but, by this time, we were desperate.
We had absolutely no help up until that point. A phone call from her stepson insisted she was not taken to her home and to his father. I was lucky that a friend, who had loaned me her camp bed for my sister, was keeping in touch with me by text and she suggested taking her to the John Radcliffe A and E which we did.
There she was booked in and taken through to the treatment areas where the nurses refused to treat her. She was not having a heart attack, she was not bleeding, she had not broken her leg. She was breathing. There was nothing wrong with her.
‘Look at her,’ said the nurse, ‘there is nothing wrong with her.’ Looking at her I could see why she thought that. Thinking help was on hand my sister had become calm and quiet, sitting patiently with her overnight bag, desperate for care and the alleviation of her symptoms which included being unable to cope with everyday life and memory problems which were contributing to her distress. Why, my son-in-law asked on the phone was the on duty psychiatrist not brought in to listen to us and what we had experienced for the last four days. But we were not given the chance to see a mental health professional. I am speechless about the lack of help we received.
The answer? To take her to a police station!
We did not know where the police station in Oxford was so I hailed a taxi and my partner followed in our car, my sister calm as she now thought help was at hand at the next destination. However at the police station she became agitated and objected to me giving information that I had written down – all her contact details, my contact details, a log of what we had experienced and her reported symptoms and feelings of distress and the suicidal thoughts and intentions.
Initially the police officers were non-committal and treated us as a nuisance. When information was requested and my sister demonstrated resistance to my handing over of the written details I saw some revelations pass across the police officer’s face and from that point we were treated more sympathetically.
The Duty Sergeant was the most helpful at St Aldates Police Station. He explained to us that we were victims of the policy and funding regarding ‘ownership’. Apparently if the police took action, they would be taking ownership and funding would be initiated forthwith. He had been asked to section my sister but he was not happy with that process. If we stated we thought she had dementia we would lose the access that had been offered via mental health services. He was sympathetic, saying he knew we had had a tough time. Yes, I had been locked in my bathroom following one attack and barricaded in my bedroom at night. I was not a trained carer of someone with challenging behaviour. My sister needs long term specialist care with supervision. It is not her fault that she is as she is.
Eventually we made it safely to a mental health unit in Oxford where she would see a doctor with an interpreter. I had already said I would not take part in an assessment as I was too closely involved.
My sister is still held in a secure ward but not in Oxford. Lack of bed space meant that she was sent to Aylesbury but hopefully she will be transferred this week.
My fear is that she is now calm in a supervised setting with no stress or family aggravation. The staff see her as ‘settled’ but if she is returned home the same problems will surface very quickly probably within hours.
I know that the staff on her ward are excellent and they talk to me at length and listen to the story of the problems we experienced in the week before she was admitted but I cannot but despair at the 111 system that let us down at a time that we were in great danger and the fact that they had opted out of dealing with a patient with mental health problems coupled with possible early dementia.
The arguments about the 111 service continue. Apparently they are referring people to A and E. They did not give me that option. Neither did they obtain a doctor for me who could have assessed her mental health and referred us onwards. In A and E, mental health cannot be dealt with, especially if violence is reported. They just don’t want to know.
This blog will be sent to my MP and to the Oxford MP.
We have been badly let down. We are lucky to be alive and at the very least free of bruises but being whacked over the head repeatedly with a walking stick and attacked with a spoon pushed in your face should warrant a visit by emergency services, surely.
We did not get that service and I want to know why.