Raising awareness Your Stories Michele's story (part three) On the 5th September 2014, after a lot of hassling on our part we finally got Ross transferred back to Norwich where he was admitted to the Hellesdon Secure Unit. Ross had his own room. It was a very secure unit with a strict visiting regime but, as a family, we were not going to accept their rigid rules that we could only visit twice a week! One of us turned up every day for the whole time Ross was there and we ensured we had regular meetings with the doctors and psychiatrists. We were not prepared to leave him in the system, we had to keep what control we could. The unit was clean and seemed orderly. We were told Ross was depressed, anxious and was having his first psychotic episode, and that he was having trouble acknowledging what had been going on. They said he was a risk to himself. Ross told them he had constant worrying scenarios playing out in his mind and that he kept forgetting things. He constantly queried his medication but they saw that as him being paranoid and imagining they were the enemy! Over the next few weeks we thought he seemed dazed and spaced out, we constantly asked the staff about the effects of the medication. Ross told us he was sleeping badly at night and felt so tired. The staff reported that he would just fall asleep in the day in an instant. The consultant reported that Ross had slow thought process and they felt he was a danger to himself as he could not move forward with his recovery. We were granted time alone with Ross when we could take him out within the grounds of the unit for an hour. We reported to staff that Ross seemed to have no sense of direction and found it hard to locate which way to go back to the unit. We also reported that he complained to us of feeling like his heels kicked together when he walked and that he found it hard to keep balance on a low beam of the trim trail. Was this ever reported back to the consultant? Ross was, on the whole, calm in the unit and seemed surprised each day that he was there in the unit with these “crazy” people. I did tell him off for this choice of words and said everyone needed help of some kind including himself. He talked about some of the patients and it was very humbling for us to see how kind some of the patients were to Ross, it was also heart-breaking to hear that few patients had visitors. I felt they needed more staff there for the patients. We had to constantly nag Ross to do his laundry and go to the gym but he seemed unable to get to grips with his daily routine of washing and personal care. We would ask him what he had eaten and done in the day but recalling this was such a problem. Ross used his right to appeal the Section and was given a solicitor who was to be his advocate. The first tribunal hearing went very badly, it got adjourned half way through because Ross could see it was not going in his favour. He was very distressed like a rabbit caught in the headlights, he was petrified. He paced around the lobby area and I watched him clock an open window and the next minute he had jumped on the coffee table and was out of the window into a courtyard within the Unit. He didn’t get far and was restrained by three staff, sedated and put in an isolation room. My husband was pacing up in the lobby distraught, saying “it’s all over “. We both went outside but we went in different directions. I sat on the bank of the field and felt numb by the whole process. I could hear by husband sobbing nearby. It was heart-breaking. We were allowed to see Ross later in the day and tried to reassure Ross to encourage him he would get well in time and be allowed home. As his mum I needed him to know we would not leave him alone and I wrote him silly cards with Winnie the Pooh quotes; ‘Rivers know this; there is no hurry. We shall get there someday’. I think it was more of a comfort for me giving them to him, I didn’t want him to forget how much we all loved him. A week later a second tribunal was held. Ross seemed calmer but very dazed and zombie like. The tribunal panel asked Ross’s consultant psychiatrist if everything had been done to rule out any other reason as to why Ross was ill. The response was “yes”. The staff were adamant he was anxious and had had his first psychotic and was a risk to himself. They reported he still had slow thought process and memory problems and was not addressing his issues. So the lifting of the Section 2 was refused. On 3rd October 2014 after 28 days of being on Section 2, Ross was put on a Section 3, which was hard for us as we knew he could be held longer in the Unit and we had less control. Ross was desperate to come home and we felt whatever the Unit were doing was not enough for Ross’s recovery. We also felt that drugs were not the answer. We pushed for and were eventually granted some home leave for Ross, four hours a day, providing he was constantly supervised by us and returned to the Unit in time for tea. This was a great relief for us. It was during this time when we were seeing Ross for longer we noticed more very strange physical symptoms. We took him to Go Outdoors as he needed new boots but he seemed unable to remember what to do in the shop, tying up laces was a great effort for him. We took him to a café by the lakes and he fell asleep whilst talking to us and seemed to breathe strangely and seemed not to draw breath when asleep, his snoring was horrendous. He sweated a lot on eating, he gagged on his food, and was hard to rouse when he did go to sleep. He also dribbled a lot. This was all reported back to the staff at Hellesdon. The Unit arranged and took Ross to see an ENT specialist because of his snoring. After this we collected him from the Unit for a few hours’ home leave and he fell asleep on the settee and was impossible to rouse. We rang the Unit to find out if they had increased his olanzapine and they had despite promising to always keep us informed of any medicinal changes. I was very annoyed and concerned the drugs were making Ross very ill. They told us he was going to be referred to the sleep clinic because of our concerns. Why didn’t I go with my gut instinct and dial 999? We then drove Ross back to the Unit and we noticed he was grinding his teeth and kept biting his tongue. He was constantly scratching his face and we noticed he kept doing strange movement with his hands and fingers like he was drawing in the air, this even happened when he was asleep. We asked the unit to review his medicine. They began to talk about moving him onto an open ward just yards from the secure unit. We were pleased by this as it meant we may get the section lifted but Ross was obviously still unwell, extremely vague and tired. An appointment for Ross to be seen by the sleep clinic at the Norfolk & Norwich Hospital (N&N) was made for the 16th October to see if he had physical reasons why he was so tired and snored so much. On the 15th October Ross was moved to the open ward but I was very unhappy with this unit. It smelt horrible and I felt uneasy but maybe that was because it was a new environment for my son to get used to. We were kept in the dining area waiting to be shown to his room. I recall when Ross fell asleep at the table drooling and breathing strangely all whilst eating a biscuit. I was trying to get the biscuit out of his mouth but he was unarousable and another patient came up to me and said “he doesn’t look well he shouldn’t be here; he needs a proper hospital”! How ironic – and how right this man was!! My husband had to help the staff put Ross to bed. The following day we met Ross and a career at the hospital for his sleep clinic appointment. We were talking to Ross when he basically fell asleep in the waiting room in an instant. He was snoring so loudly that people and staff were concerned and stopped to look and see if he needed help. We were called in to see the doctor but could not wake him at all. With the help of several concerned staff we got Ross into a wheelchair to see the consultant. The consultant tried to rouse him but he was in a deep, deep sleep. The consultant was alarmed by Ross’s lack of response and he spent a long time talking to us. He said he thought there was something far more serious going on with Ross other than mental health and sleep issues and that he would write to the Unit to advise them to arrange a brain scan and tests. He wanted all medication stopped and Ross’s case to be reviewed immediately. At last! I felt someone was on our side, someone was listening to our concerns. We then had to take Ross back to the unit with his carer along with the letter from this doctor. Ross was totally out of it the whole time; it took three of us to him out of the wheel chair into the car. Now again I ask myself why didn’t I just insist we go straight to A&E at the N&N? Back at the Hellesdon Open Unit the staff had to carry Ross to his room where the staff alerted the unit doctor. She was also now very concerned about Ross and was contacting the N&N and taking into account the letter from the sleep consultant. We were then in the visitor room, after talking to the doctor, when Ross suddenly appeared in the waiting room, he was stuffing his face with sweets and the carer came in and said he had just woken up and had eaten loads of bags of crisps. He was giggling and acting very childlike shrugging his shoulders. He would not share his sweets stating ‘they are all mine’. His face looked strained. We were then told Ross was to be taken by ambulance to the A&E at the N&N with a carer who had to ‘guard’ him 24 hours a day when away from the Unit. We followed. In the A&E Ross was finally seen by neurologists, for the first time since he became unwell. They ordered a whole range of tests which showed he had a dangerously low sodium level and all medication was gradually reduced pending the results of further blood tests. Ross was constantly saying to me; “so I am in hospital, do you know why?” Ross was admitted onto a ward under the care of the neurologists. It was hard watching him struggle but we just went with the flow and felt we were getting the right care at last, but we were still constantly fighting his corner. Ross was still under a Section 3 still and had a constant carer with him for 24 hours a day but it did mean he had his own room. He constantly said to us; ‘do you know I have a carer’ and ‘what do you mean when you say I have been in a mental health unit?’ Ross was very confused and puzzled by the situation. He tried to abscond from the hospital twice so then he had to have 2 minders 24 hours a day! I found it hard to think of Ross being watched 24 hours a day but I had to remind myself that they were keeping him safe and I encouraged Ross to think of it as company for him. I think I only got annoyed once when one carer came in and he evidently knew nothing of Ross’s case and he said to me so your son is like this because of his drug taking! I sarcastically told him the only drugs that made him ill were the ones the mental health unit gave him. Most of the carers were considerate of Ross and us. For the next 4 weeks, in the N&N, he was on saline drips and IV antibiotics for anti-bacterial and anti-viral drugs while all known blood tests were done & results awaited. All psychiatric medicines were reduced and finally stopped. An MRI scan was done on the 20th October. Ross slept a lot and confusion was evident. We left him notes on his table because of his memory problems; Ross you are in the Norfolk and Norwich hospital. You have low sodium levels. You may have inflammation of the brain. We visited Ross almost every day, returning to Canterbury for the odd days, to check on my elderly in-laws who live close by to us. My lowest moment was a morning, after we’d been a few days back in Kent, that I walked into his room and he looked at me blankly I said; ‘Hi Ross’ and he just stared at me and said; ‘Who are you’. I said; ‘Ross it’s me Mum’ but then a minute later he said ‘Hi Mum’. Ross was very fascinated by a tattoo on his shoulder which he had done when he was 19. He could not remember having it done. He also forgot that his grandad had died 4 months previously. I bought in lots of photos to prompt his memory to get him to recall things. He was also fascinated by the card and letters we had given him when he was first admitted to the mental health units. He read them again and again as if he had not seen them before. He was also convinced that the new boots in his room that we’d bought in Go Outdoors a while back were someone else’s! We all played simple games with him which was hard work. Ross liked I SPY best as he seemed to manage that. Even Kim’s game with 3 objects was a challenge in itself. He had to be reminded to shower and change clothes, I recall on the 22nd October I had to get him to go take a shower I took him to the shower room and he just stood there and I had to show him what to do with the shampoo and how to turn the water on. He just looked blank. I thought to myself he must have got mad cow disease and it’s my fault because I used to feed him mince beef as a child! Or maybe he has a tumour. I was planning what we could do if he needed this 24-hour care forever. My mind raced constantly and sometimes I felt I was watching the whole scenario from the outside. When the nurses came in to enquire on his bowel regularity he would just say; ‘I don’t know if I been!’ and be indignant as to why they had asked him. The daily warfarin injections also became a drama point of each day with Ross making such a fuss. I was very embarrassed when he swore at a nurse and always hoped the nurse who had the pink hair would do it as she managed to handle Ross well. He affectionately called her pinkie girl, how the nurses kept so patient I don’t know. Ross needed a lumbar puncture under local anaesthetic but it proved impossible as he could not stay calm and still. I had to beg for him to be given a general anaesthetic and it was finally done on 23rd October. Ross’s snoring and weird breathing and sleeping was a continued cause of concern and he was to be referred to the sleep clinic again. The doctors from the mental health unit visited Ross in hospital. He could not recall the unit clearly. I was concerned because there was talk of moving Ross back to the unit because the lumbar puncture and MRI scan results were clear and his sodium levels were back to normal. One doctor said his short term memory problems could be purely psychiatric. I was absolutely convinced that there was still another physical explanation for Ross problems and prayed he could stay at the N&N. Ross was scratching his face neck and ears a lot. Ross seemed spaced out and forgot who he had spoken to on the phone within an hour of talking to friends. He tried to read a newspaper but would just keep to the same page all the time desperate to remember it. One evening he was talking to us and kept repeating words over accentuating them in a very strange way with weird exaggeration movements of his mouth. On the 31st October the results from the EEG brain scan showed some abnormal results so Ross was started on a high dose of steroids for five days and we noticed a slight improvement in him but nothing major. We were told they now suspected Autoimmune Encephalitis and we waited for the specialist blood test result from Oxford to confirm or otherwise. If not a return to the open ward looked imminent. Finally, on the 6th November 2014 we had a phone call to say a positive diagnosis for the rare autoimmune condition, ANTI NMDA RECEPTOR ENCEPHALITS, had been confirmed. Ross’s own antibodies were attacking his brain function. Immediately he was given a five-day course of Immunoglobulin Therapy (IVIG) treatment. It was a miracle, within days it was like he had been reborn, the old Ross was back in the room. He was on a real high and after having further scans to rule out tumours he bounced back to the ward announcing to the nurses; ‘it’s alright girls my balls are all fine!’ Ross constantly told people; ‘They fixed me, they bloody well fixed me.’ He was jubilant & emotional and said; ‘I told them all right from the start something was wrong with me, I was right, I’m not crazy.’ Ross was finally discharged from the N&N on the 12th November 2014 and the Mental Health Section 3 was lifted on the 14th November 2014, after months of misdiagnosis. I am truly forever grateful to the wonderful consultant at the sleep clinic at the N&N who finally got Ross the medical and neurology help he needed and also to all those staff at the N&N hospital who I believe gave him back his life. The physical side effects from this disease have been kinder to Ross then to some people. He has no memory of those months before his diagnosis and treatment which may be a blessing in many ways. He seems more open and talks more to us now which is good thing. Occasionally he can get quite emotional but that is to be expected. As a result of his illness he has been diagnosed with sleep apnoea and uses a CPAC machine at night to keep his airways open and ensures proper sleep. He has since had a further five-day treatment of IVIG again in February 2015 at the N&N as his consultant was concerned for him but he has since remained well and blood tests to date are clear. The doctors suggested immunosuppressant’s as a precaution against his immune system going into overdrive again but Ross has been reluctant to do this at this stage because of the side effects of the drugs. Hopefully he will never relapse again. Ross is now under the care of Dr. Sarosh Irani at Oxford who is regularly monitoring Ross which is very reassuring for us all. The psychological aspect of the disease is harder to evaluate with flashbacks and Ross has received great support from the Encephalitis Society’s neuropsychologist. He is trying to help raise awareness of the disease. We were blessed to have Ross back home and well. He has been given a second chance and has the opportunity to work and enjoy life again. We now know what caused all his problems and knowledge is a wonderful thing and we can help raise awareness, even if it’s just like me the other day on the train telling a random stranger about what we learnt about this disease. I have to say again a big thank you to everyone who helped us through this ordeal, especially Ross’s girlfriend who was constantly there for us all. She was a source of inspiration for me and I can never thank her enough and will always love her for it. We were also surrounded by constant loving support from Ross’s sister and brother. To all of our, and Ross’ friends, and family who visited regularly and kept in touch I am forever grateful to them. And to my husband, whose determination and willpower and persistence to get answers for our son kept us going, he is our rock. I want this narrative to raise the importance of better communication between psychiatrists and neurologists. As Ross’s mum I now question everything I did but I know hindsight is a wonderful thing. I know now to never ever worry about questioning professionals and to follow my own instincts. Many will say it’s ok for you, you got your son back and he is well and they are right. Maybe writing this is a selfish form of therapy for me to get closure. I still do feel angry and sad that Ross was misdiagnosed from the start and that someone in the GP services and in my local A&E department and within the mental health units across the Country should have thought outside the box sooner. As a family we went through hell, it was scary and heart-breaking. Surely better monitoring should also be done in mental health units to review patient’s health more regularly with neurologists involved. The lack of awareness within the medical and mental health units of this disease can mean the difference between life and death, recovery or disablement. Prompt treatment is vital. It also raises awareness for the lack of funding within our mental health care in this country. No one should be sent away miles from their home because there are no beds available locally. I dread to think of any others’ son or daughter being sectioned wrongly on the basis of psychiatric behaviour especially if there is a physical reason for this. Ross was fortunate he had so many people who loved him and who watched over him, some people in life do not have that blessing.