John Backhouse, RIP

My husband John had a TIA in July of 1990. He was working on our wholesale plant nursery situated behind our home and he phoned me to say he was coming to the house as he felt strange. He collapsed as he got into the kitchen and his speech was slurred and difficult to follow. I telephoned the GP and was told to dial 999. In the A&E cubicle, John suffered a further TIA and I was ushered out unable to get any information for approximately two hours. I knew nothing of strokes or TIAs at this time. When I finally got to see a Doctor, I told her we were due to fly to Sri Lanka in three days as we were going there to adopt a baby daughter. The day before we were to fly the consultant said "I cannot tell you not to go" and John was discharged. We decided two negatives made a positive and went, not without some trepidation. John admitted that he had had a couple of "odd turns" whilst out a few days previously. He was fine in Sri Lanka, in fact he was the only person in our group of four who was not ill. The adoption went through without problems and we brought our daughter Susanthi home after ten days. We had been expecting a six week stay.

Three happy years flew by, until late one evening in August John came from the bathroom saying he could not use his left hand properly. I wondered if it was a sprain, decided not and after ten minutes discussion, I telephoned our GP for advice. I was told advice was not given over the phone and did I actually want a doctor. We waited over two hours for him to come. He found John's blood pressure to be dangerously high and admitted him to the local infirmary again. Although his left side remained impaired he worked hard to achieve his independence. With a young daughter he adored, and his own business, he had every incentive. Doctors and his work colleagues were all impressed, but as an engineer, who had always enjoyed making and creating anything and everything, he sometimes found life very frustrating.

During the next three years, there continued to be slight improvements in John's condition and in November of 1996 we had a large bonfire party - our largest social event in 30 years of marriage. It was an enormous success. Five weeks later, I had gone out before breakfast to the let the dogs off for a run as usual. I came back just as John came into the kitchen to make a cup of tea. We exchanged our "good mornings" and I went immediately for my shower. Coming out of the bathroom, I went back to the kitchen to investigate a strange find. John was on the floor, he had obviously had a stroke and was having an epileptic fit. It must have happened immediately I had left him as he had not even taken his cup out of the cupboard. The ambulance crew spent a long time trying to get an airway, both in the kitchen and then in the ambulance on the drive. I took our daughter to a friend and drove to the infirmary. In casualty I was whipped into the Sister's office, asked if I wanted tea or coffee and told my husband was dying. I declined the drink and went off to the assessment unit. John was wired up to an array of instruments and surrounded by people. I recognized the consultant - he was the father of one of our daughter's friends. When he realized who John was, he had me taken into an office and came to speak to me a few minutes later. Sitting opposite me, he put his head in his hands, then looked up saying how sorry he was; he didn't think John would survive. John was moved to a small room and I was advised to get hold of a relative to sit with me. My brother was at a site meeting at a remote water treatment works up in the Pennines - a message was left but no-one could contact him immediately. I sat by John as hospital staff came in and out taking readings but mainly fighting to establish an airway.

Normally patients stay on the Assessment Unit for up to four hours; John was there until 8.30 the following evening, when he was transferred to a general medical ward. There is no stroke unit in our area and no specialist consultant. John recovered consciousness the following Tuesday. He had no speech but as I had spent ten years teaching profoundly mentally and physically handicapped children, all without speech, I set up a system of hand squeezing communication. Two squeezes for yes. There was no doubt John understood and when my brother arrived in the evening he said he was amazed at the strength of John's grip. John's intellect was in tact but his expressive language had been destroyed. Unfortunately, none of the medical profession believed either me or our close family and friends, on the grounds that the scan showed too large an area of brain damage for that function to be operating. This was to have devastating results.

A PEG was inserted on the Friday. "Just sign here" a note written across the medical records to indicate I was giving my consent. I gladly gave that consent but I was not told of the implications of that consent, i.e. not being able to withdraw it if the situation changed.

I was invited to attend case conferences but they largely seemed a waste of time. Frequently many of the staff did not come. Sometimes there was not even an apology for non-attendance. Once I asked the consultant if John could have botulinum toxin treatment and this was casually dismissed as "no good". I then asked about the value of videofloroscopy. "And where did you get that one?" I was asked in a cutting tone I can still hear.

After about six weeks, John's care deteriorated. The staff would not leave the nurse call buzzer within his reach; he was doubly incontinent; it was not policy to use incontinence pads on that ward; he was frequently soiled and in an effort to get away from the soiling it was transferred about the bed. I could tell by John's pleading, distressed eyes when I walked into the room what the problem was. Being completely paralysed down the right side, and with some paralysis from the earlier stroke he was difficult to dress and pyjamas were frequently torn. I witnessed lack of care and sometimes lack of understanding of how such a patient should be dressed. Then John fell out of bed. He was terribly bruised down his right shoulder and arm. It was not until the consultant came back from holiday that he was taken for an x-ray. The right cot side was broken and tied up with string. I was told, "John must have undone the string". This was absurd, as it was impossible for him to get the partially paralysed left hand above his head and undo the knots.

My catalogue of complaints grew and grew and as I arrived at the nursing station with yet another request or complaint the staff would bristle and I knew that I was labelled "that woman"! I tried to be reasonable, did not shout, helped in looking after John etc but the situation got worse. A friend suggested I see the Ward Manager formerly and she came with me, which was good as there was a slight improvement for about two weeks. It was now just before the 1997 election and she suggested getting in touch with candidates. One took up my case and wrote to the Chief Executive of the Trust. I met the consultant by chance in the corridor a few days later and he smilingly told me everyone on the ward had been jumping up and down all afternoon and John was now in a side room overlooking the garden. In the previous room he had his back to the window but faced the litter strewn loading bay.

The new environment was much better for him but the number of mysterious accidents continued, there was always an explanation, which I usually went along with e.g. he was agitated and tried to pull the catheter out, his arm/leg got caught in cot side rails, biting his lip caused huge swelling of the upper lip - to this, I said it was impossible. At this stage John started to make sounds in his throat for the first time. When I left him he would hook his arm round my neck and hold me by his face desperately trying to talk. A friend who saw him every week would sometimes use magnetic letters with him and John would pick out our names. At this time, one day unbidden he took the letters and picked out BAD ME and Pam said "you're not bad John". He was looking for another letter and then pushed the board away and would not interact with Pam again that morning. If John's evil assailant had had a short name, we might have realized what John was trying to tell us. A few days later I was told John had been found blue in the night and was ill. He looked dreadful and I only left him when it was time to pick up our daughter from school.

The following evening I got a phone call from the Ward Manager. She had been called in as John as been found with two cuts on his right side, "of course, he could have done that with his finger nails" she said in a monotonous tone, and also cuts on his left forearm. She did not add that it was impossible for John to have done that as his right hand was paralysed. I felt very calm; at last something would now be done about these accidents which were worrying me so much that I had started to take photographs of them. I went in as usual the following morning, after dropping Susy at school. John was more alert than he had been since the stroke. He was OK and I promised him confidently that everything would now be sorted out. I rushed into the town centre and had my photographs developed. When I arrived back on the ward, the security manager was waiting to see me and shortly afterwards two CID officers interviewed me. It transpired that John had tapped one of the nurses on the wrist and pointed to an auxiliary, who was looking out of the window, when she said she wondered who had done it. This was from a man, who for over six months, no-one would believe had any intellect!

The police and security were wonderful. The hospital staff seemed to be trying to disappear into the woodwork. In my presence the CID officers interviewed John using the hand squeezing technique. The male officer became quite emotional briefly and had to stand in another part of the room until he composed himself. The staff who had been on duty at the time of the "incident" were all suspended, a security officer walked through the ward every hour "just checking". The following day I had to give a very detailed statement at the local police station. It proved to be very emotional for me and I had to answer the question, "if you were so concerned, why did you not do more?" That question will haunt me for the rest of my life. It was not a nice ward, some of the staff left a lot to be desired in their care, physically it was not attractive and was approached down a dingy staircase. I was physically and emotionally tired and felt guilty every time I left my husband. I went in several times a day but his care was far from good. If it was not good when I was there and complaining, what on earth was happening when I was absent? I should perhaps have shouted and screamed and written to the newspapers. But I had gone to my MP and he appeared powerless to intervene despite having an enormous majority. The same evening police arrested a male auxiliary nurse and charged him with grievous bodily harm. Plea-bargaining then begun and finally he admitted a lesser charge of actual bodily harm, cutting John with a stitch cutter and all other charges were dropped.

The media publicity began which I found deeply distressing. One good thing was that the hospital was in a different parliamentary constituency from my home and the newly elected young MP commented in the local press. I made an appointment to see her and following a very sympathetic, but business like meeting, she sent off letters and John was suddenly heard at the Crown Court. I had been invited by the CPS to write to the Judge and he read extracts in court. This gave me some satisfaction as some of the other injuries were referred to and the Judge said it was a "chilling case" and a sentence of three years was given.

During this six months, I had, through the help of the family solicitor had a specialist in rehabilitation from Newcastle to assess John. I had appealed against the decision that John was not entitled to continued nursing care and won a review. In the specialist's opinion, John should have rehabilitation in a specialist unit. The hospital did not agree - and I naively thought that after all the adverse publicity they would help. Only three units in the country were suitable. London was out of the question. I very much wanted Newcastle as its main strength for John was it's expertise in communication skills but the waiting list was long and it was for a minimum three month stay and the specialist said, privately, he was sure the health authority would not agree to fund John. The third unit was relatively nearby in Leeds. I went to look around and was very impressed. I rang the consultant and she spoke to the specialist. Much to my surprise, a few days later two nurses came to assess John. When John's consultant found out he was furious and demanded of me who had "given me permission to go there". I was no longer afraid of upsetting anyone and finally got the necessary authority for John to be transferred for a one month assessment. I decided a half victory was better than nothing at all. A condition was that John would be transferred back after the four week period.

For the last two days of his 15 months stay John was moved into a six bay area. He was looking better already. In the ambulance I was reassuring him throughout the journey and he received a warm welcome from the two nurses he had already met. He was transferred from stretcher to bed and then his named nurse came across to be introduced. But it was a male nurse and since the summer John had been terrified of any man who came near him. I saw the fear in his eyes and he gripped my hand. Here was a problem and we had only been on the ward a few minutes. Names were exchanged and I realized he was from the North East. I commented on his accent and said John was originally from the North East too. The nurse leaned close to John and whispered something, John smiled at him. That was the first time I had seen John smile for 15 months. I was not let into the secret of what had been said. That set the tone for the next four weeks. John was dressed, again this was a first. I went in one day and three staff had him standing with a walking frame. When I spoke to him, he looked up at me and smiled. That was smile number two. The place was wonderful, even the tea lady and the cleaners were carers. My daughter and I were also cared for - "its all part of the rehab, to look after the whole family" I was told. I was encouraged not to make the long journey everyday so once a week I would telephone and talk to John.

Immediately I saw John settled I made an appointment to see the registrar. I told him I was going to refuse to let John go back to the original hospital. I repeated this very simply but emphatically time after time. I wanted John transferred to a very local hospital until I could locate a nursing home, which could provide the facilities I now knew he needed. My bottom line was that if the Health Authority would not co-operate I would telephone the local TV station and press telling them I would be laying on the road in front of an ambulance and the reasons why. There was no way this time I would not do everything which was the best for John, no matter who I upset. I knew now how I should have reacted last time. I knew there was something wrong. Hindsight is a wonderful thing.

We won! At the end of four weeks intensive assessment we left with a recommendation for John's rehab and went to the rehab ward in the little hospital about three miles from my home. We were met by welcoming staff and John was taken into a single room with the window facing a brick wall. He cried. I asked the ward Sister if I could talk to her privately and immediately. She looked very surprised and took me to her office. She knew nothing of John's background but had heard of the court case and understood why John could not be in a room on his own. A delighted elderly man was moved from a four-bedded cubicle and John was put in his bed by the window. Next to John was 88 year old Herbert - a reincarnation of my father. A guardian who didn't sleep much and took it upon himself to watch over John. He would buzz for the nurses day and night whenever he felt John needed attention. God even ensured that Herbert was not discharged until the same day that John was moved to the nursing home. The physiotherapist and her helper were wonderful with John and they finally got him walking, with much help and encouragement, between the wallbars. As with the rehab unit, my daughter liked to visit, and became friends of the other patients and staff.

I found a nursing home, in another health authority, about 20 miles from my home. John was discharged and moved just before his birthday. The home had a physiotherapist, was set in lovely grounds and from John's bedside he could look up the drive and see the entrance. Birds and squirrels came to feed outside his room and in the lounge he was place by a window, which overlooked a lake. We introduced him to Geoff, the home handy man and they became friends. The fear of males had gone and if Geoff was working in John's corridor he would go in and chat to him. With regular physiotherapy and working with the speech therapist with sign cards plus visits to the hospital for botulinum toxin injection releasing some of the spasm, life improved greatly for John. I discovered AbilityNet had opened and office in York and promptly saw the manager, he was very positive. He was not interested in how bad the scans appeared, he just needed to see John. He took along a computer, some keyboards and software. John co-ooperated wonderfully. I was really excited about the use of the computer if we could communicate, John's quality of life would be greatly improved. I talked about it with him a great deal and had numerous telephone calls. Finally, I got three lots of software, which I was experimenting with at home but it was very time consuming. I bought a large, flat screen monitor, was given a motherboard and keyboard. Then John had another stroke.

It took all movement, the sight totally from his left eye and virtually all sight from his right eye. He was dying. The feed was stopped and I virtually lived at the nursing home. I was sent for twice and the third time, very early one morning. A friend had come down to stay and explained to our daughter at 4.40 am that daddy was dying as I rushed away. I stayed two days and one night and finally came home, returning the next day when I had taken my daughter to school. I only left when I had to pick her up from school. Later that evening when I telephoned the nursing home I discovered that John's feed had been restarted after I had left. No consultation with me.

For the next ten months John hung onto life artificially through this PEG. He was put onto Hyperidol, which led to terrible fits lasting up to 90 minutes. He was very very sick and needed medication to keep down medication and feeds, often unsuccessfully. His feet and legs swelled, his only movement was when he vomited. I am sure that he could hear. I persuaded the GPs to get a consultant neurologist to see John as I wanted the feed to be stopped as recommended by the BMA guidelines. He told me not to worry, as John would die very shortly. That was November. I phoned him in April and he came back admitting he had been wrong but did not know what to say except that, as John was in a nursing home, I would have to go to court to the get feeding stopped. I got a palliative care consultant to see John. She stopped the Hyperidol and the fits ceased but all she could say was that I needed a holiday, but not to book it yet. John was continuing to have more strokes and the vomiting was increasing. Spring Bank Holiday came and I took my daughter on holiday to Scotland to my sister-in-law's. I phoned each day. John was ill for two days and then settled back down to the normal pattern and we enjoyed our break.

A friend had a heart attack and was in intensive care in the hospital where John had been and where I had said I would never enter again. After a little while she asked to see me. She was very ill, fed through a nasal tube, hoisted and catheterised. I went and she asked me to do mouth care - she had seen me do it to John. "Please come again", were her parting words. I went a few days later on my way to see John. I was not in a hurry for I had telephoned the home at 7.30 that morning, as usual, he was fine. I had an appointment to see the nurse at 2.00 who was coming to see the bed I had finally persuaded the Health Authority to buy, as the dietican and I hoped this would alleviate the vomiting, and this had arrived the previous week. Unfortunately, the Health Authority had forgotten to order the mattress and that was due that morning. After seeing my friend I turned my mobile phone on as I got into the car. There was a message asking me to go the home as quickly as possible. John died before I arrived.

This is a long story, if you are a carer, friend, spouse or parent or child of someone who has had a stroke and you feel sure some aspect of their care is not right, please, find the courage to speak out. The time afterwards when you may regret not doing so, lasts forever. Also, do not sign consent for artificial feeding without discussing fully the implications. It is very easy, at present to say "yes, please feed", just about impossible to say stop feeding if the situation changes.

For more information about PEG feeding, contact the Brain & Spine helpline on 0808 808 1000 (available weekdays 9am to 1pm except for Wednesdays: 10am to 6pm), or NHS Direct on 0845 4647.

For initial legal advice re your rights and responsibilities as the main carer, contact Nick Ward-Lowery of Ison Harrison (solicitors) in Leeds on 0800 169 0181. They are specialists in clinical negligence and may be able to tell you if you have a case or not.

Thanks to John's Wife, June, for sending in his profile.

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